SSD and Chronic Pain

[Kathi49]

I just have a question for any of you that might know.

When dealing with Chronic Pain in whatever form, have you ever been told it was NECESSARY or MANDATORY that you receive psychological counseling, holistic medicine or assisted devices in obtaining SSD? I understand the concept of counseling if truly depressed or angry. But not once in 7 years have any of my doctors even suggested it. I also understand that it is a component of pain management. I am not knocking it at all. But this one attorney I am speaking with is INSISTING that it has to be done.

Personally, I don't feel depressed or angry. I might get down when I can get to something or do something. But, no, I am not in a continual state of depression. I just have good days and I have bad days...just due to pain.

Maybe it is me and I am missing something here. But I don't think meditation or counseling will resolve a disc herniation or neuropathic pain. And I definitely don't think I am depressed or angry. I just take it for what it is and deal with it. And I know for a fact that if my doctors thought I was depressed they would have recommended something but they haven't.

Then she had the audacity to say that the medical community does not shed a favorable light on pain management doctors. WHAT??!!! I have NEVER heard that at all!

Anyway, this is all just too odd. Any insight anyone? Mabye it is because a judge might ask if you have been in counseling. But nope, I haven't and it has never even been hinted at.

[Mark N]

Kathi, no it isn't necessary and the only thing I can see is your attorney is trying to eliminate all the possibilities before you go into the hearing. But SSDI does not require psych testing.

[razmataz]

Kathi...

It sounds to me that your attorney is trying to cover all the bases... Meditation/visualization has carried me thru some pretty serious pain sessions.
Many people need help processing their loss of independence with disability and severe pain issues.

She's probably thinking of the SSDI community when she mentioned pain doctors are not looked upon favorably... Pain management has a long way to go before it will be accepted by all..IF EVER. If you had counseling due to pain issues it could work in your favor..but ONLY if you need it...many of us do.

Good luck...I hope you are successful the first time with obtaining SSDI

Razmataz



I just have a question for any of you that might know.

When dealing with Chronic Pain in whatever form, have you ever been told it was NECESSARY or MANDATORY that you receive psychological counseling, holistic medicine or assisted devices in obtaining SSD? I understand the concept of counseling if truly depressed or angry. But not once in 7 years have any of my doctors even suggested it. I also understand that it is a component of pain management. I am not knocking it at all. But this one attorney I am speaking with is INSISTING that it has to be done.

Personally, I don't feel depressed or angry. I might get down when I can get to something or do something. But, no, I am not in a continual state of depression. I just have good days and I have bad days...just due to pain.

Maybe it is me and I am missing something here. But I don't think meditation or counseling will resolve a disc herniation or neuropathic pain. And I definitely don't think I am depressed or angry. I just take it for what it is and deal with it. And I know for a fact that if my doctors thought I was depressed they would have recommended something but they haven't.

Then she had the audacity to say that the medical community does not shed a favorable light on pain management doctors. WHAT??!!! I have NEVER heard that at all!

Anyway, this is all just too odd. Any insight anyone? Mabye it is because a judge might ask if you have been in counseling. But nope, I haven't and it has never even been hinted at.

[Kathi49]

Probably so Mark. And I don't have a problem with that. What I have a problem with is the insistence. And, I don't know, I suppose I am offended by what she said about pain management doctors. If it had not been for my spinal PM, I would probably still be sitting here today in horrific pain. What gets me too is that this was just a phone conversation and they do not have all of my paperwork.

Anyway, in the meantime, I found one that handles disability claims. He is a Veteran and has spinal disorders. So, those two items ought to help right there! He will understand the governmental side of things as well as the spinal issues. So, that was positive.

[BrokenBladder]

Kathi I'm on SSDI and never once did my attorney, or anyone else, say that I need to see a counselor.
When I saw the judge it was all about my physical disabilities. The judge did ask me at the end of the hearing if I ever felt depressed and I said yes sir I do, I want my old life back. He gave me a positive decision right then and there.

[Kathi49]

I was thinking about this and feel I need to clarify some things before it gets too far gone LOL!

First, I was speaking to a staff analyst (what he termed himself) and NOT the attorney.

Second, when he brought up counseling it was due to the fact that I had been prescribed Klonopin; an anti-anxiety med. But set that aside for just a minute. He also said that anyone taking ANTI-DEPRESSANTS and/or ANTI-ANXIETY meds is viewed or looked at as needing counseling. In other words the person has either a mood disorder so to speak or an anxiety disorder. I can understand that line of thinking if that were the case.

BUT...how many of you out there take anti-depressants for neuropathic pain? Does that mean you have a mood disorder or are depressed? No, it means you are taking a medication used to treat neuropathic pain. In other words, those of us with spinal disorders or nerve pain, did not enter treatment because were were depressed. We have actual mechanical problems or disease processes causing the nerve problem.

Also, in my case, I CANNOT tolerate the anti-convulsants nor the anti-depressants. Therefore, the anti-anxiety med(s) worked for me and were prescribed ORIGINALLY FOR SMALL FIBER PERIPHERAL NEUROPATHY. It also helped with the muscle spasms after my first fusion. And I did have panic attacks from being on the Neurontin. This is ALL PER MY NEUROLOGIST. I never said, I am anxious, what she said was anxiety could present as a burning sensation. In any case, it was peripheral nerve pain and I was diagnosed with small fiber PN prior to even taking any of these meds. Neurontin and Lyrica worked but I could not tolerate the SE's. Now, if you were to ask me about lack of independence. That's when I would have said I was depressed or I should say unable to function...because those meds knocked me for a loop.

Anyway, I was explaining all of this to this person; the whys, wherefores, etc. But he says a judge will ask you why you did not attend counseling. Again, I explained that it was never mentioned to me before. And I truly believe my doctors would have said something if they thought I was unable to manage the pain...but they never did. Now, if a judge were to ask me this, I have no problem in explaining it.

And I didn't even have a problem with his questioning. BUT...he was insistent that counseling was mandatory and would be a good thing to do to support my case. Well, sorry, but I am not entering counseling based on the whims of someone who sounds to be 25 years old and who I believe doesn't really know the full spectrum of spinal care after talking with him at length. Now, could this be hurting my case? I really don't think so but it might. And I plan on speaking with my spinal PM about this. I trust him. And if he were to say, hey, it wouldn't hurt, then I would consider it. But if he says the exact opposite and feels it isn't necessary, then I will trust his judgement not that of an analyst and I don't care if he has 1000 law degrees.

I will tell you...he was trying to play wanna-be doctor and I just don't buy it. Plus, every time he asked me something and I started to explain AGAIN, he interrupted me constantly. Anwyay, it is hard enough to get to my appointments as I said before let alone go into something I do not feel is necessary at all. And it is not just the spinal disorders but other conditions as well factoring into this i.e., pelvic floor dysfunction, etc.

I don't know, maybe it is because I have a large support system in place that I am able to remain upbeat. Sure, I cry when in severe pain and I get to a quiet place to lie down or I even distract myself with a hobby or something I can do. But I don't view myself as in a constant state of depression or even anger. I think and I hope I have accepted it because is what it is. I don't like it, but I deal or cope with it and that is what my doctors are for.

And just for kicks I wrote to 6 of my very close friends to ask them if I ever appeared to be depressed or angry as I went through the last 7 years of this. These are people I used to work with and have made this journey with me so to speak. And they have no problem telling me if I am full of crap or not LOL! They ALL wrote back individually and what they said collectively was on the average, "We are amazed that you stay upbeat considering what you have been through!" Yep, that was nice of them I grant you that. But the one out of the six who was the closest to me said she only saw me get down when the pain was severe. But then added that the Zoloft she is on and the weather has her crying today and wrote, "...and I don't even have pain!" LOL

So, I think having a strong support system in place and great friends it what helps to keep me balanced. And it could be maybe why the doctors have never said anything about Biofeedback or counseling or meditation.

[Mark N]

Kathi, forget this guy, he is a wannabe. He thinks he knows more than he clearly does, the meds we use for pain or spasms he only recognizes as ADs or anxiety meds. He is wrong about the judge asking about seeing a counselor. At least at my hearing I was not asked this nor did my attorneys ask me during the time heading up to the hearing.

Sounds like you found an attorney that has dealt with your issues, some of them. Forget the other ________[fill in the blank with your favorite word] and find out how this attorney will handle your case.

[Kathi49]

Mark,

Thank you. I am hearing this more and more from others on SSD and they said they were NEVER asked that question. And, yep, I am forgetting this wannabe!

The other attorney is out of the office until Monday. But his secretary was very nice and said HE would call me. Thank you, I don't want another staff assistant wannabe! LOL

Oh, and this is interesting. Did you ever notice on the SSA Release forms (where you allow authorization to release your medical information) that for INDIANA it says you can EXCLUDE any mental health information. So, even if I had had counseling in any form, I STILL could have excluded it...so what's the point???!!!

Oh, well, if a Judge were to ask me that question about counseling, I will just explain quite simply it was never recommended. :)

[Kira]

His opinion is just that... one guy's opinion.

That said, counseling/therapy can be really helpful with teaching coping strategies, even if you aren't all depressed or angry all of the time. You have a lot on your plate, and even if you manage to keep an upbeat attitude, it can still help to learn skills and techniques to get through the bad times.

BUT... I wouldn't go to therapy just because some lawyer guy (who sounds biased against pain management in general) says I should go. The decision to go to therapy is a very personal one, and also I don't think a person would get much out of it if they weren't wanting to be there.

Therapy is a lot more than just telling someone how miserable you are and having them empathize with you. A good therapist will teach you the skills you need to manage unpleasant feelings (mental and physical)... how to use rational, purposeful thinking to get control of negative emotions and painful situations. They will teach you skills to manage anxiety, stress, discomfort, etc. And they will help you learn how to be more effective in your day-to-day life, so that things go more smoothly and functionally. It is a lot more than just being able to act like things are okay... it is about learning how to actually get yourself to the point where you are okay with things as they are... which is not easy.

I'm not saying that you necessarily need therapy... It is a very personal thing and I don't know you well enough to say one way or the other (which is what bothers me about the lawyer guy saying you have to go "or else"). But I do know that it can be very helpful, given the right therapist and a patient who is motivated.

[krashleen]

Kathi, I think the flip side of this is that if you have a psychological problem in addition to the physical problems that your case will be easier to win.

JMHO

[ErinENj]

Kathi: I'm not sure about SSD as when I applied I was denied (it was awhile ago) and I didn't bother to fight it because I didn't have the money for an attorney. Plus, I didn't think it was right to apply again for it when there are a lot more people out there who need it more than I do. I figure if I can still go to school and I can still hope to have a job, I'll wait to get it for the day when I'm completely homebound.

But, I do know about having counseling. I've been seeing a counseler (I have no clue how to spell that! It's late and I'm tired so thinking isn't a strength right now!) for nearly two years, and I find it amazingly helpful. I think the biggest thing that helps is that it doesn't feel like the clinician-patient relationship. When I go there, it's almost like I'm meeting a friend for lunch. She just happens to be a counseler too. The biggest thing it does for me is gives me the ability to rant and rave, cry, scream, whatever I feel like doing to someone where I don't feel there's a consequence. If I do the same with my mom, I feel guilty for burdening her and making her worry. If I do that with my friends, I feel the same way. I don't want to make them worry any more than they already do about me. Tonight, I was having an issue with my arm (who knows...my luck, I've herniated a disk in my neck and my right arm is going to go to hell in a handcart and I'll be up a creek without a paddle - yeah, enough of those stupid sayings I know....I got ya' to laugh though, right? :D :p ) and as soon as I was kinda forced to tell my mom, since I couldn't really use it and she was wondering why the majority of my dinner ended up on my chest because I'm not ambidextrous and my left hand is completely useless, I got that look that I can't stand. The 'oh God, what has happened now? My poor daughter; I hate seeing her like this. How can I fix it?' look. All you mothers out there know what that look is because as soon as a woman gives birth, she suddenly knows all of those looks that will make their child do whatever she wants. I hated having to tell her because I know that she's worried about me now, and she's got enough other more important stuff to worry about. That's why I have my counseler. So I don't have to have that guilty feeling when I talk about the pain I'm in. Also, she treats other people with CP, so it's not like I'm talking to someone who has absolutely no clue what I'm talking about, especially when I'm talking about my meds or tests, etc. And as she's told me, I'm probably the most stable of all of her patients so she enjoys seeing me.

Once I found the right counseler, I was set. I'd gone to a few other people, including one guy who made me angrier than I was when I went into the session and had to go talk to my mom about how utterly pissed I was at this guy ( every session, he wanted me to change something. He actually suffered from the dellusion that I could quit smoking in a week without any discomfort. He was totally wrong for me!!). He was obviously the wrong fit. I don't think that going to see someone has kept me from being depressed. By no means. I had one of my lower lows when I was seeing her about a year ago. My life had just added up to too much and no matter how much I talked about it, there was no changing that and no changing how I felt. But having someone to talk to, and who'd help me to figure out why I felt the way I did really helped start me working out of that deep hole.

I don't think that they can require you to get counseling or anything else unless a doctor orders it. But what I think they can't do and what they actually do are too often the polar opposite (like the whole constitution and bill of rights...I think that people have those rights and no one at any level of the government or even in the private sector can supercede them, and it turned out I was wrong...go figure...). Whatever happens, I hope that the path to getting what you need isn't too rocky and goes smoothly. I don't know the whole system and I'm sure there are hundreds of hoops you have to jump through, as with everything official, but I hope that none are too rough on you and that at the end of all that hoop-jumping, you end up with the SSD that you need!! Best of luck and keep me posted!!

[Quahog]

when I was going through the ss disability process my lawyer wrote down depression as one of my symptoms.

so because of this I was sent to see a ss psychologist who interviewed me. He asked me some questions and determined that I may have some depression which was due to my chronic pain but that my real issue was from the pain. He didn't think that my appointment was needed but it was SOP.

That was the only head-shrinker I saw through-out the whole 3 year deal.

My attorney kept asking if I would go but in the end it was not needed the judge saw my records and medical history and gave an on the record decision and I was approved without a hearing.

I know in certain situations they can be very helpful but to be honest I personally don't believe they would be all that helpful for me.

I wish you success and loads of good luck in your disability case. May you receive it quickly.

[Kathi49]

Thanks All,

I did have the psych exam as part of the SSA deal. And I didn't sweat it or have a problem going at all. Other than it was right after my surgery and I was still on a lot of pain meds. I have to admit I did cry afterwards, once outside because I was in shock about my short term memory loss. I felt more embarassed than anything else. But it also could have been from the meds.

And I will tell you that when I first went in he acted like let's go through the motions and get this over with. Not friendly at all. But at the last he told me I had a lot on my plate meaning multiple conditions. It was more like he took pity and was understanding. But not once did he mention depression or anything like that.

I am not knocking counseling at all. I have been in counseling before a long time ago for other issues; I know how very valuable it can be. And I don't think of it as shameful at all. I know it can be very helpful. Been there and done that and I am glad I went. And, yep, I ranted and raved and let loose!

This is different. I don't feel rage, anger or depression over my conditions. I just don't. I don't feel a loss of independence either. And maybe it is because I retired of my own accord due to ongoing pain and the fact that I needed yet another cervical fusion. So, feeling a loss of my job isn't an issue I was ready to go; 33 years of working and I was done! I really thought I would get better and not once did I feel disabled. The whole thing was to retire, maybe relax take some time for myself and move on with life. And do things I have always wanted to do. Actually, everyone thought I was much better AFTER I quit working. It was working with these cervical issues that was killing me.

And I really thought to myself to give it a year and see how I did. Then I was going to look for something part time; something fun to do...maybe. But that first year was just to relax and have some fun if I could. This idiot asked me two days ago why I didn't take long term disability. And I flat out told him...because I didn't feel I was disabled...I was just in pain. OPM would not have gone for it anyway because I have seen several people way worse off than I was at the time, be denied. And I am speaking of guys with heart problems and ones that could barely walk. There were only two that got approved; one with open heart surgery and the other with arachnoiditis from what I can remember. And I still can't do the amounts of research I used to do because of the long hours spent at a PC.

Okay, so I retired in 2005, was doing okay and then last year all h&** broke loose and one thing after another started going. That's when everyone including a few of my doctors started suggesting to me to apply for SSD. There was just so much factoring in besides just the spinal stuff. But I could only work on one issue at a time. I got the majority of it figured out...but like right now...I still can't go into pelvic floor PT because most of my time is being spent getting the neck, shoulder, arm thing figured out. And my PM is still uncertain if the C4/C5 isn't going too. So, that is a concern.

Anyway, no, I wasn't one of those who said, oh let me retire and then apply for SSD. I was NOT even thinking about it. I was thinking again, if I got better, I could maybe do something part time if I got bored or something. What I really wanted to do was to take courses with a friend of mine to become a certified genealogist. I thought that would be fun! But that is my hobby. Yet, I couldn't even do that when she brought it up again. But I wasn't mad about it. I just figured I couldn't get from Point A to Point B without some kind of flare. I tried to get involved more with the DAR because it is a lot of fun. But just driving there killed me. But again, I wasn't mad about it. I just accepted the fact that I just couldn't do what I used to do.

So, maybe that is why I don't feel anger or depression or rage or whatever you want to term it.

I had to laugh last night because my husband knows how I get when the pain is severe. And we were kind of joking because I still can wake up from a deep sleep with bad occipital pain. And how much more relaxed can you be when sound asleep??!! So, no, visualizing that I am on beach or some other kind of meditation or even biofeedback would not work LOL! Again, a crushed nerve or whatever it may be doesn't care at all if I am asleep or awake, calm or stressed out. It is what it is. Actually, BEING still makes it worse. I have to get up and stretch out my neck a little or get some ice.

Anyway, again, I don't believe counseling is necessary at all. But I said I will talk to my PM about this and see what his thoughts are. But I will also tell you this much. One day I was asking him about Vitamin B12 and he laughed and said, "The key to all of this is to have a good family life, a good spiritual life and forget the Vitamins!" He was joking of course but I caught his point. In other words do whatever you can to make you happy and feel better. And that's what I do. I said it before...I have a strong support system in place and that I believe is what keeps me balanced and upbeat (other than that jerk I talked to the other day lol). If I were living in isolation, then, oh yes, I would probably be really down in the dumps. But for now, I am not. :) If I ever get to the point where I am actually bedridden, that would be a different story.

The whole thing with SSD is that you DO NOT have to be bedridden. It is more what kind of work can you do for 8 hours a day. And that is my question. You can't get much more light, as in light work, then sitting at a desk all day...and that is something I can't do. If I do, then here comes the occipital pain and headaches. If I sit too long, then the lumbar acts up. And on and on it goes. So for me, I am up and down and all around until something lets up. And I don't think a potential employer would want to hire me if I were to call in sick from these various flares. And not even part time work because I HAVE asked about it.

[BrokenBladder]

Kathi I don't know your entire story with SSD. Did you file already and get turned down. If so, was it once or twice? I learned alot going through the process and would be glad to share my experience with you.
AGE is a huge factor with their decision too. If you're under 50, then they usually turn you down twice and you end up in front of the ALJ. You can ask me openly here and I will answer or you can PM me!!

[Kathi49]

Lisa,

I don't have a problem putting it out here LOL! Yes, twice! But this last time it looks like they are SLOWLY coming around. There was more addressed about light work and how I can't do most of it but still feel I can do some of it. I am over 50...by 2 months LOL! When I applied before, of course I was 49.

I did call the SSA in DC a few months ago. And when the gal found out I was a retired federal employee, she really opened up! :) And actually told me they normally turn everybody down the first couple of times. I realize this isn't necessarily true. But she had me going with everything I needed to do. And was really helpful. So, I am just going through the motions.

Oh, and this guy the other day says that 50 is still very young. Well, yeah, in terms of working years but I am not 18 either LOL! He made it out to sound that 50 was just not old enough. I guess I have to be 75 or something LOL!

[Pharmacist.steve]

Kathi...

Underlying psychological problems can make pain worse.. trying to recognize and/or deal with them - if they exist - MAY help ...the chronic painer is not always aware of these stressors. Even dealing with these stressor most likely won't eliminate your pain.. BUT .. if it helped to lessen or helped you better deal with your pain ... would that be worth exploring it ?

[Kathi49]

Steve,

I understand. I understand the whole component and the reasoning behind it. :) I will talk to my PM about this because, really, it is had never been mentioned by any of my doctors. I was reading up on the pros and cons of Biofeedback as an example and one, it says it does not take the place of conventional medicine and two, it is not a proven science and three, it doesn't work in all cases. I could really understand it use for relaxation though; say in someone that has Fibromyalgia as an example. I can even see its use in migraines. I really just don't believe it would be beneficial in my case because the problems are mechanical in nature. And, yes, I understand about blocking pain signals. BUT, I can tell you when the cervicogenic headaches hit and hit full force; there was no relaxing about it! Not when I was in the ER puking my guts out from the pain and having vaso vagal responses to it. :eek: I think Glenn could relate to what I am saying as he knows the occipital pain and I believe he might even say, there is no escaping it until something is done. But, I will let him speak for himself because this is one horrible condition to live with.

Again, this whole counseling thing was NOT brought up because of depression it was brought up because of taking Klonopin that was prescribed by my Neurologist for Small Fiber Peripheral Neuropathy and spasms. I did have panic attacks because of Neurontin (according to her). And that's because it made me so dizzy (vertigo and such) that I would have a fear of passing out. She told me I simply couldn't tolerate those kinds of meds and that some people just can't. Once I was off of them I was much better. So, that's when the deep breathing came into play and that sort of thing. But the C3/C4 fusion took care of the severity of that. I still have occipital pain flares (C2/C3 facets) and have coping techniques for it but it almost has to go away when it is good and ready to. Anyway. this guy suggested counseling INFERRING Klonopin was given to me for anxiety which it was not. Sort of like taking Valium for spasms but then having it implied a person is using it for depression. IF that were the case, I would definitely understand counseling. But both of those meds are used to treat spasms and neuropathic pain. Also, as you already know, Klonopin is also used for seizures. But I don't have them either. :) UGH, lol, I will just have to get a copy of the Neurologist report regarding this. Let's just pretend that all I ever took for pain was Vicodin, would it still be implied that I needed counseling? No, this was brought up because HE said that AD;s and the anti-anxiety meds are viewed by the SSA as someone having mood disorders and anxiety. I really don't think everyone in the US who is disabled has had to go into counseling because they were taking an AD for neuropathic pain.

My intention was not to spark a debate LOL! And I do understand what you are saying and appreciate it. Again, I will talk to my doc and see what he says. If he thinks it would be beneficial, I would consider it. I have just never really given it much thought because it never entered my mind to do so. I simply haven't felt depressed or in need of counseling because for the most part the meds take the edge off...but not always. I will post back about that once I talk to him on Thursday. My beef really has to do with the absurdity of INSISTING that it was mandatory which it is not.

I am also going to speak with this other attorney and get his view on it. :)

[Kira]

One thing that is hard to understand is that the skills you can learn to help deal with the fact that you are in pain are NOT necessarily meant to make the pain go away, lessen the pain, or take the place of your other pain management strategies (including meds). Some people try to use them that way, of course.

But something I have learned is that you work on dealing with the fact that the pain is happening, not on trying to make the pain go away.

The pain is there. Sometimes it is terrible. I have pain from a very concrete, physical mechanism, too (the tissue literally dies while still attached to me, on a large scale... lots of major muscles all at the same time). So it would be crazy to think that I could make it stop by simply relaxing, breathing, etc.

The pain is there. It will keep being there. But while it is happening, what can you do to help yourself get through it with less suffering? The pain is physical, concrete... but the suffering is made up not only of what you feel physically but also how you experience that physical stuff mentally...

So you take the meds when you need to. You get out a heating pad or an ice pack or you get in the tub or you do your stretches, whatever helps while you wait for the meds to work or the pain to pass.

But it is also about what is going on in your mind while you are doing all the physical stuff. It is about how you are mentally dealing with the pain. It is about if you feel anxious because you are scared it will get worse, or that you will lose more functioning, or that this attack will last a long time and you won't be able to stand it (NORMAL human responses, by the way)... or reframing it so you experience it in the moment and don't let it grow into this big, overwhelming thing, so that it is easier to deal with. It is about what kind of mental dialogue you have with yourself about the pain, while it is happening, and whether it is a helpful dialogue, or it increases the suffering...

So yeah... the therapy stuff, when used right, isn't meant to take away the pain... just help you deal with it.

[curiousforever]

I have no clue....they won't let me apply as noone can say 'she can't work for a year'.

All I can tell you is that docs (even the good one I had before he moved) said counseling is *only* a tool in your tool box of coping with pain.

I know what you mean about not needing it due to not really being depressed. I'm the same way - I am generally a happy person. 90% of the time. I'm not all stressed out (if you were to ask one doc - you'd think I was dead by now from having unbelievable amts of stress due to 4 kids cause she couldn't handle one teen girl).

But - if they feel it would help your position/situation - it wouldn't *hurt* to go a time or 3 just for your SSD hearing.

[Cervie Barb]

I agree with Krashleen's take on this.

My attorney was really angry when I told him I did not want depression considered in my case. I just felt it should be judged on the physical aspects.

Yes, I was depressed in the beginning - situational depression I call it. Grieving, really, over the life you've lost. I think it would be unnatural not to feel that way with decreased function.

Anyway, it is easier to get with the depression included. That's what they're going after. But it's stupid that they look at the meds your taking and automatically assume depression, in your case. These meds are used for pain. Increase the natural seratonin, etc. They should educate themselves on that.

Good luck Kathi!

[Quahog]

I can so relate to all this.

I went to the Er a few times due to some real bad muscle spasms and pain. The Er doc looked at me and my Hx and knew what would help. Valium. It seems he has herniated discs too and it was the only med that helped him when things became hard to deal with.

I of course did not want them but he insisted and said they would help. I was also told that if I ended up in any trouble from my PM doc to have him call the ER and he would help. Fortunately, it was never an issue.

Boy, was that ER doc right. My local ER is very helpful and very nice to boot i have never had a problem when I have had to go. I have never been treated so well by an ER.

Regardless, my Rheumatologist found out I was taking valium and told me I needed to see a shrink to help with the depression and anxiety. :mad: I tried in vain to explain that i used it as a muscle relaxant and not for anything else. It makes me mad that they think these meds are only for psychiatric problems.
Why don't doctors ever listen to their patients? and they wonder why people really don't like doctors and the healthcare system.

As for the occipital headaches; Kathi you are soo right in your description.

[Kathi49]

Thanks again everyone,

I am going to try to list coping strategies because that is all what this boils down to when you think of it. So, here goes..

Heat and Ice
Meds of Course
Soft Collar when needed
Donut to sit on when needed
Diagnostic and Therapeutic Injections when warranted
PT ONLY when warranted (still getting some of this figured out)
Massage Therapy
Aqua Therapy
Supplements or Herbs - No way and for several reasons
Hot baths/showers
Gentle Stretching
Therabands
Various exercises but not a lot of them due to the multiple conditions.

These are just a few of the physical things I use.

Mentally?

Talking with family and friends - a great support and will sometimes take me to my appointments.
Humor - That's a big one...I think having a sense of humor is more than half the battle!
Prayer
Acceptance NOT Denial knowing I will never be 100% and that's OKAY...I don't EXPECT to be. :)
Distractions and by that I mean handling something that needs to be taken care of; phone calls, etc. Just little things.

Other than that I think having lived with this for 7 years now I have become adapted and I KNOW the triggers. Rainy weather or cold weather is a big one; so I do whatever it takes to avoid going out in it if I don't have to. Caffeine is another; can be helpful and can be hurtful. Loud noises or bright lights is another. Oh, and large crowds. There are many more; I just can't think of all of them right off the top of my head right now.

It's funny because my mom was just over here and chatting away. And I did ask her if even she felt I was ever depressed or angry. Mind you she has gone with me on a LOT of appointments. She starting laughing and said, "NO!" She said of course she has seen me in pain and yeah, that's a downer...but a NORMAL one and NORMAL to cry. Now as she was sitting there and talking to me I had another one of those occipital headaches...and pretty bad today because of the rain. But did I leave the room and cry and bemoan my fate? Nope, I just talked to her and laughed and then when she left, I put my soft collar on and now I am sitting here. :) Do I hurt? Yep! Could I sit here for 8 hours and do data entry as in a job? NOPE! I am not even upset, angry or mad or depressed. Again, it is what it is.

Now, if in a couple of hours if it becomes severe, I will take a hot bath, get some heat or ice and lie down and finish taking my meds for the day. I might even watch some TV as it is relaxing and I take the stress off of my neck. :)

And these are all pretty much the same things I told the Psych Examiner when he asked how I coped with the pain. :)

[Kathi49]

Glenn,

I forgot to add that I went to the ER the other day because of a new symptom in my arm. Was I scared? No! Was I crying? No! I was CONCERNED that the one good disc between the two fusions was starting to go and CONCERNED about the trembling in my arms. The ER doc did an xray of my chest because Pancoast tumors can cause pain to radiate to the shoulders. Now, I had to lay there for about an hour and wait for the results wondering if I had cancer. But I didn't get all shook up I just waited for the results. So, he told me he believes it is tendonitis in my shoulders.

Okay, that's cool...on to the the next step because it wasn't cancer and it wasn't my heart either.

Back to the PM I go and he even thinks it is tendonitis but still not absolutely certain it is NOT the one good disc. Am I freaked out? And am I crying? No, no, no. I would hate it if told I need another fusion, but you just deal with the cards you are dealt! I DID tell the PM I was close to tears because I couldn't get it FIGURED OUT! Not because I was scared but only because I didn't know what was going on based on a new symptom. And I was just tired from driving all over town LOL!

Anyway, YOU know Glenn, the horrendous pain of occipital neuralgia or cervicogenic headaches. And I can lay down $1000 bucks that even you would say there is NO stopping it short of an injection of Toradol. I am not talking about the minor flares; I am talking about the "just cut my head off pain". Now, tell me Glenn, do you think counseling, Biofeedback or Meditation would stop that?!! I don't think so!! LOL And I can laugh about this because I know and I think Glenn knows when you are lying in the ER in screaming pain you WANT them to cut your head off! Either that or knock you out until it stops. Those things come on out of the blue! This is something no one understands unless they have lived it. These are no migraines. When I used to get these, prior to my fusion, I would have killed for a migraine! At least they end! Or there are always those migraine meds. This is sooooooo different! So, I know YOUR frustration in getting help for this. It is an extremely difficult condition to treat and the docs will tell you as much.

Anyway, I am rambling. But the headaches are part of the job problem. I never know when they are going to happen. So, let's say I got a part time job just 3 days a week. How do I really know I will be fine with it? I don't! Earlier today I was fine, because it was sunny. When it started raining, here it comes! :eek:

[ErinENj]

Rain sucks! Snow is better!

Anyways, you know what, you know you. If you don't think you need it, then okay, you don't. It sucks that you might have to jump through hoops with the official types about it, but I think if you don't feel like you need it, then so be it. I knew I needed some help. I was okay for awhile, and then suddenly, one day, I'd just lose it, and freak. Everything I felt, everything I was angry about, every little thing that had irritated, bothered or frustrated me and anything that just plain ole' pissed me off, came out in one huge explosion of emotion. I'd cry for a day, maybe even two or three, and then I'd go back to just stuffing it down and holding it in. And the same thing would happen again, over and over. I couldn't figure out how my life had turned out like this, and how I'd ended up in this position. I questioned every day what I did to piss God off to make Him think that I deserved this. I was angrier than words could ever express. So, once I found that right counseler, it was like a miracle for me because there wasn't any more of that stuffing it down and holding it inside of me. I was able to have a safe place to let it all out. And it's not just about the pain. In the past six and a half years, my life and everything I thought it was changed. I think my parents and their issues and the divorce and all the things I've seen my father do to disrespect my mother who is my best friend, all of that has taken a huge toll on me, and a lot of the time, my therapy sessions are about that. So I know, with or without my back, I'd still be in counseling. It's amazing when I think of all of the bad things that have happened in the past 6 years. My parents marriage, my brother's guilt about things my father did that he never did anything about, my back and all that's associated with it, and one of the harder things was losing my grandpa so suddenly. It's just a lot to go wrong in such a short period. I was destined for counseling, no matter what my health looked like. Through that counseling though, I do see those good things, those glimmers of hope. The biggest one is very obvious: I'm graduating college. And I'm doing it after going through all of this crap, and I'm doing, as I say, with style. I'm on the Dean's List and have been for years, I'm a member of the National Communications Honor Society, I'm the member of a couple other honor societies, I've achieved a straight A semester, and have gotten fantastic grades and met many great people, all while that other stuff was going on. Now, because I've been able to lay it all out, I know that this happened for a reason. Without this nightmare, I would have never gotten such good grades and been so proud of myself. I would have never met some of my best friends. I would have never met some of the most influential people in my life. There are a lot of "I would have never"s and that balances it all out for me. And my therapist helped me change the way I look at these things in my life. So, for me, counseling works.

I think, like you've said in this thread, you've worked this 'experience' out for yourself. Some of us can do that, but there are some of us who need a little help or push to do that. I needed that push, you don't. I think you've figured out how to make 'you' work with the pain, not the other way around. And I think that's one of the hardest things for us to do, but it's one of the most important. And I think you should be very proud of yourself for being able and being strong enough to kinda take stock of your life and figure it all out and be able to say, 'I know what I'm doing right now and I know that this pain fits here in my life.' It takes a very strong person to do that, and I'm positive you are that strong and that you know what's best for you. And I don't think that you should change or doubt how you determine what's best for you just because someone who knows nothing about you and works for the government (no offense to anyone, but there's something off about people who work for the government! :D :p I know that for a fact. I live with someone who works for a level of government, and she's the saner of the people I've met who work with her. It's slightly terrifying at times! :D ).

Like I said earlier, you know you, and I really think that you know what's best for you, both physically and emotionally. So if you don't think you need a counseler or a relaxation technique (I've been using one I learned at summer camp about 10-15 years ago, so I know that we all have those little things we've learned somewhere in our lives, usually from the most random places, that can help us through and I'm sure you have one of those tricks too) or anything else for that matter, then I'd trust you.

By the by, that's my biggest concern about work too. It's kinda hard to say to an editor, "well, I feel okay right now, but if a big story breaks later, I can't promise you that I'll be well enough to go out and cover it, so don't hold me responsible for us getting scooped and losing face for not covering that amazing, huge, important story. Please hire me." I don't think that would go over well.

And a final note: I think ERs make most people cry. I think hospitals do that in general. I had one of my PM doc's associates treating me the day after my last lami/diskectomy, and he actually put me on Xanax because I kinda had a nervous breakdown and flipped out completely, crying and screaming about how I just want to go home and why couldn't he just let me go home. He never came back to see me again. I think he was afraid that I was going to hop out of my hospital bed, and with this amazing feat of strength, rip his head out and punt it down the hallway. I probably coulda at that point, and probably would have if he showed his face in my room again. But, pretty much every time I'm in the ER, or the hospital, I cry. It's probably because when most of us are bad enough to go to the ER because we can see no other way of getting the help we need, it's amazingly beyond any form of the word 'excruciating' and usually tears accompany that type of pain with some regularity. And I think the ER is just amazingly depressing, no matter how nice it may be. It just draws the tears out. Heck, sometimes it can be helpful. I got some decent treatment last year because I started bawling and sobbing at the doctor. He actually did what I told him I needed him to do. And the pain doc on call was smart enough not to show his face anywhere near me and just give me what I asked for without any problem because him, I woulda ripped his head off. He's the doc who spent an hour screaming at me, telling me that I was a complete addict and threatened he wouldn't treat me anymore, and then told me that I was out of line expecting him to return my call and that it would probably be better if I just made the $100 appointment (that was just the money he got from me as a copay. I think the insurance paid him at least 5 times that). Yeah, he doesn't have a high estimation in my book. For him, I coulda had some major supernatural feat of strength and would be able to do so many unmentionable things to him. Anyway, as per usual, I have gotten sidetracked....

Kathi, I really think that you are a very strong woman. If you think you don't need it, that's good enough for me. :D

And by the way, just in case you forgot, rain sucks. Snow rocks. (hehe I love the snow! We haven't gotten nearly enough here in NJ and now it's spring and has been 60-70 degrees the past few days, so i doubt there will be any more. It's so sad! :( I hate global warming! I need to move to Maine or Alaska. Somewhere cold!!)

[Mark N]

Kathi, as this post has generated response and you have explained more about what went on I have to say that you don't have to justify yourself to anyone and many one here are saying the same thing. Some of us have learned to deal with the changes because we have been taught to solve our own problems. We accept life as it is and deal with it. Others, for a variety of reasons, need help to work through constant pain. It isn't easy to handle all the changes, pain, and disablities that have come in to our lives but if you can handle it on your own then noone, especially wannabe disability attorneys, can tell you that you need to do this to justify yourself.

Just because you were upset and angry after dealing with moronic behavior doesn't mean that you have issues other than not letting some stranger walk all over you when they should be helping you work through the SSDI maze. I remember being asked who prescribed my cane for me and it was all I could do to say I wasn't so stupid that I kept tripping and had to go ask my doctor what to do. That is hard for some people to comprehend it seems like but some of us take matters into our own hands and help ourselves.

I hope you find this new attorney much more understanding and knowledgeable about CP and disability, at least he has some personal experience.

[Kira]

I think we ALL feel like our pain is so bad that no one can understand it and that it has to be worse than ANYTHING else. I know that the pain I get with my attacks is just ungodly. So your comments to Glenn about how terrible cervicogenic headaches are and how no one can understand that kind of pain... they make sense to me because I don't think many people can understand the intensity and severity of the pain I experience, especially with attacks.

When I get an attack, my muscle tissue dies. Not a little piece of it; not one or two isolated muscles... usually it is my upper back, upper arms, neck, hips, calves, and shins. The tissue dies but it is still on my body.

It hurts like hell, especially when some of the complications kick in (such as low calcium causing severe spasms called tetany) and even more when my white blood cells start reponding to the dead tissue by trying to clean it up. Have you ever had a really, really inflamed infected cut or boil or abscess? You know how just LOOKING at the thing makes it throb and scream? Well, picture having all of your muscles be just like that, right under the skin. Then the dead tissue starts to swell, which causes other problems as well (compartment syndrome).

But the worst part about it is that you are wondering if this is going to be the one where your kidneys fail from the myoglobin released from the dead cells. There is a 30% risk of renal failure with each attack. I have had 9 attacks.

When it is happening, I can't even lay on the gurney because there is no possible position that doens't put weight on one of the dead, inflamed, spasmed muscle groups. So I basically just sit there and cry and shake (and sometimes yell a bit too much at the nurses and doctors, but hey, I'm in pain) until the pain meds are at such a high dose that I can't fight it anymore and just fall asleep.

When the acute part of the attack is over, then I am left with more scarring and calcifications from where the tissue was damaged, as well as even further weakened muscle strength. Massage and stretching, which you'd think would help with the scarring and calcifications, actually make it worse somehow (I've triggered minor attacks this way). Exercise in an attempt to gain back strength is not possible because that is one of the big triggers for my attacks (metabolically can't make enough energy to deal with the amounts that exercise demands). So I have this everyday pain from the tissue damage, too. My everyday pain is tolerable with the meds, though it has not been very well controlled at all since the last hospitalization.

In terms of the therapy stuff, I wasn't saying that you have to go or anything like that. And in my first response to you, I did say that the guy should not be the one making that decision. It should be YOUR decision, with some guidance from doctors, family, friends, etc as needed... but it is a really personal decision.

But, I do take offense to some of the attitudes developing in this "debate" about therapy and the people who choose to utilize it. It is not that we are somehow abnormal or somehow less tough. Needing help getting through a MAJOR loss is not the same as having, say, schizophrenia or bipolar disorder (legitimate mental illnesses). It is just acknowledging the subjective sufferring the situation is causing, and taking steps to deal with it.

I find it a little weird (or maybe defensive) that you DON'T feel angry, afraid, sad, etc about the stuff you're going through.

For me, with some of my illnesses and stuff, I haven't felt much of an emotional reaction (torn cartilage in my shoulder joint that you have to cut out and reattach? no problem... i had the surgery during med school and went back to clinical rotations the next day with a sling and a big fat bottle of advil... life-threatening allergic reaction to contrast dye with resulting hospitalizations off and on over a couple of months? no problem. I did my ICU rotation during that whole mess and would literally go back and forth between the patient and med student roles within the same day).

But for this major stuff that changes the entire course of your life, threatens organ failure, makes your body refuse to let you do the things you're passionate about, makes young women you know profoundly ill and bedridden, hurts like hell, and makes it so you can't stop puking.... that is a much bigger deal, and much harder to accept.

I could probably accept it much more if it were not such a fresh wound (only been a couple of years) or if it were more predictable. But I don't know if I will be basically fine in a few years or if I will be bedridden with home healthcare services. I can't have kids because if it is a mitochondrial thing, that is a genetic defect transmitted from the mom and I would not willfully give this awful disease to another human being. So, basically, this disease has taken away my ability to practice my calling and my ability to have a famility. It has not only made me feel physically miserable but it has crushed my dreams, too.

So, yeah, I'm going to therapy for it. Does that make me "diseased" or "abnormal" just because I have some anger and fear and sorrow over this stuff? No. It makes me human.

Here's my list of coping strategies:

Physical:
-succumb to the exhaustion and park it on the couch
-heating pads
-hot baths
-opiates
-ibuprofen (buckets of it)
-GENTLE stretches for PT (get minor rhabdo attacks from stretching hard)
-hold really still and wait for it to decrease in intensity
-sedation (in the hospital)

Mental:
-bring a friend with to the ER so they can fight my battles and I can just be sick
-cry if I have to cry
-mindfulness: pay attention to what is going on in the moment, and then in the next moment, and the next... taking it all in, even if it is unpleasant, and not judging it as "good" or "bad" but rather just it is what it is... not letting the mind wander into "I'm going to feel like this for days" or "last time this happened it was terrible and they messed up my meds..." and so on.
-CBT: working on being aware of the "automatic thoughts" that underlie what is happening emotionally, and then challenging those automatic thoughts with rational thinking and evidence... so that when you find yourself feeling similarly upset later, you can tell yourself the new balanced, rational thought to replace the automatic one
-letting my friends and family be supportive

[Mark N]

Kira,

You are right about counseling not meaning you are 'diseased' or 'abnormal' [that reminds me of the Gene Wilder 'Young Frankenstein' movie and Abby Normal]. One of the big problems with my iwfe is she won't see a counselor any more because she 'doesn't have a problem'; other than anger and alienating her her two children and her husband.

It is a personal decision and I can't make her go through it. I hope that others know that it doesn't put them in a bad light to go through counseling. Many times, with the right one and we have had a wrong one to know how bad it can be, talking to someone that you don't have a previous attachment to can help you open up and not get defensive about what is said. Sometimes it is nothing more than gaining another perspective something that all of us should have from time to time. There are many times we can get through things by ourselves and other times we need someone to talk things over with.

[BrokenBladder]

Kira I don't believe that anyone should put down counseling and I know that's not where Kathi was coming from. I do believe it should be a personal decision , when it comes to CP, on whether we need it or not.
There were some issues that stemmed from my childhood for which I saw a counselor and she was wonderful, but I knew I needed her and so I sought her out. I've had CP since 2000 and I'm not saying that I will never seek therapy, but right now, I'm okay. I guess maybe I know this because I've gone though it before and I know what's not okay.
I would never dream of putting anyone down for seeing a counselor but at the same time I would never tell someone, who seemed to be handling things okay, that they had to see one.
Kira your post just made me understand a little more of what you go through and my blessings go out to you. I never understood the tissue part.
Take Care,

[Kathi49]

Thanks again everyone,

Oh, believe me...I have found counseling very, very helpful...many times! But that did not have anything to do with chronic pain; it was external forces at play and ones that had nothing to do with me at all! BUT...it affected me tremendously! I SOUGHT support during those times in the forms of support groups and therapy in order to help me cope. I have not lived 50 years without going through some kind of trauma in my lifetime LOL! :) Oh, and it was only once that counseling actually had to do with ME and that was during my years of infertility. I really needed help then with emotional issues. Now, that is when I was sitting there asking "Why me?"

I can't explain the other on this board but just believe me when I say it didn't have anything to do with me. Yet, it impacted me SEVERELY...that is when I went out and sought information and help. And those external forces that were at play hurt me far, far worse than this chronic pain. My point is, I couldn't stop or change what was happening on the outside. But I had to seek help in order to learn how to handle my reactions to them.

So, maybe, having gone through some very severe crisis moments, has helped me to cope with CP. I don't view myself as super strong at all. But having been through so much and now that it is over and has been for quite some time, I have just accepted my physical condition because it is NOT something that is external and is a PART of who I am.

What is that old saying? "What doesn't kill you only makes you stronger." Maybe that can apply to me. I don't really know. But the CP doesn't get me down near as much as all this other did.

I was reading about arthritis and the stages of pain last night. That article really hit the nail on the head. I think I bypassed the "Bargaining" stage though LOL! And went straight on to Acceptance. Do I like this stuff; having all the spinal issues? NOPE! I never jumped up and down and yelled YAY by body is falling apart! Sure I cried in the beginning stages and yes I was scared. But remember, this was 7 years ago when it all started. So, I have had plenty of time to gather resources and zoom in on what I had learned in counseling in the past. And I can sit here right now and tell you what a counselor would say in dealing with pain of any kind. But all you have to do is read up on it and the strategies I have in place are the kinds a counselor would recommend.

So, when my PM says have a good family life and a good spiritual life, I know what he means. :)

Anyway, I don't take offense about comments about not feeling angry, sad, etc. at all! :) I went through that already....in the beginning stages. It was the not knowing and severe pain that made me frightened! But I know what it is and I deal with it. Again, I can't change what is happening I can only put in place coping strategies. If I am weird because I am not sad or angry. Okay, then I am weird. Because I don't have those emotions about my conditions. Again, I wish everyone would read that article about Arthritis and Pain; it is a good one. I guess I could compare it a little to what my mother experienced when she lost her spouse. I truly thought she was going to die she was soooooooo depressed and was actually passing out because she couldn't eat. I INSISTED that she seek a grief support group through her church. She told me it wouldn't be of any help. But she forced herself to go. She says it was the best thing she could have ever done. It took a couple of years but she gradually got past it. So, again she went through that grief cycle and just last year, after being alone for 15 years, she married a very nice guy. That's not to say she doesn't miss her years with the other and still speaks of him on occasion. But she is in a new chapter with her life and is willing and ready and happy to move on. And I am glad to see this. :) And maybe that is what I have done too. I think I am just at Acceptance, plain and simple.

And Mark, thank you!!!!

Just because a person might cry on occasion or get mad at moronic behavior; justifiably I might add, doesn't mean they are in a state of chronic depression or even need counseling. :) If that were the case, I think everyone on this earth would be in therapy LOL!

No, I DO understand where others may need help with their conditions. That's not what this whole thread was about anyway. And I didn't intend to spark a debate about CP vs. counseling. I was simply asking if counseling was considered mandatory because I had never heard of it before! And I was upset that this guy insisted it was. This has more to do with legalities than anything else. :)

[Kathi49]

Lisa,

Thank you. You just said you are "okay". That is what I am trying to get at. I AM okay for the moment or the time being (and I mean mentally lol). It is a nice, sunny day today and I am going to TRY to get out for just a little bit and get a new pair of jeans.

My darn occipital headache did get bad last night. That's why I wasn't on here for quite awhile. I was also very nauseated. So, I did as I usually do; laid in a hot tub and let that heat just soak the back of my head, got some ice, took a bit of Phenergan and laid down and watched TV until I fell asleep. Oh, and took the meds I do every day anyway.

In the past, I would have been frightened, had a panic attack over it and would tell my husband to take me to the ER for a shot of Toradol. Had it been at that level last night, I would have asked him to take me to the ER. But it wasn't a 10; close but still not a 10. And at a level there was no way I could sit at this PC for two hours or so. And precisely what I mean by I never know when it is going to hit, because ANYTHING, just a slight turn of the head can cause it to go into an uproar!

So, that's what I mean. I KNOW what it is, what is causing it and pretty much know what to do when it happens. That's what I mean by coping strategies and acceptance. It simply is what it is.

Oops, I forgot some more coping strategies that I remembered last night.

- TENS unit - use it at times when the pain is bad across my upper back
- Elicit the help of my daughter and my husband when it comes to vaccuming
- Grabber Stick - Strange, I know, but I use it when it hurts to pick something up off the floor.

Oh, and I THINK what might have triggered this headache yesterday was riding with my husband to look at some flooring. He wanted my opinion so I more or less had to go and I wanted to go. I just didn't want to be out all day because I know what happens. Anyway, typical man lol, he was driving and hitting every bump in the road in Indianapolis! And I was sitting there wishing I had brought my soft collar because I started to feel it come on. :eek: Those higher cervical levels with facet arthritis are beasts!

[Peter B]

Kath,
I think your lawyer will think it will look better if a psych. is on your list of doctors.

Pain free days,
Pete

[Kathi49]

Thanks Pete,

I know where you are coming from. :)

[tiva]

Kathi, I see no reason for your attorney to insist on counseling at all. And I believe you when you say that you think you don't need it... But I could see where your attorney could ask you if you've had it, or if you've considered it, given your medications, and even your (or anyone’s) history of chronic pain, just to cover the bases, to ensure that your case is represented fairly. Not only is there the misery of chronic pain itself, but in addition the devastating losses, which can vary from person to person.

That being said, don't feel that all hope is lost for your claim to be accepted for SSD, without a claim of depression. I'm a good bit younger than you, with a 2-level C3-C5 ACDF, which failed to help. Prior to that I did have 2 RF procedures which did help greatly with the headaches, at C2 & C3. My ACDF caused neurological problems (widespread twitching, tremors, hyper reflexes), and severe burning pain that initially mimicked PN, (feet, then spread to hands). At this point my SSD claim was approved, by going to an ALJ after my initial claim was denied; it's supposed to be on a shorter review cycle, since my condition was not considered permanent. I'm available for any questions if you have any. Good luck.

One year post-op I had 2 lysis of adhesions procedures; they revealed very thick scar tissue in the epidural space around spinal cord behind fusion (not around nerve roots). The 1st lysis helped my feet symptoms for 1 year. The 2nd lysis unexplainedly worsened the remaining symptoms & spread them to the most of my remaining unaffected parts of my limbs, and my upper back. There continues to be a slow spreading of my symptoms. I’m still seeking a diagnosis for the symptoms other than those in my feet and pre-op, since no one has any explanations; I am running out of options though.


Kira, I'm sorry for all that you go through. It has to be especially tough, worrying about your organs. Obviously we have completely different conditions, but you mentioned scarring that occurs after your acute attacks. I have scar tissue, but in my cervical epidural space. After many other failed attempts of various forms of exercise, starting out with just a minute or 2 at a time of each form, I tried the same with stretching. This was one of the absolute worst things I've ever done. Every single stretch I did caused delayed nerve pain that lasted for a week.

I try to read any article on any type of scar tissue that I can find. I have one bookmarked about "Muscle Pain Relief," because it discusses scar tissue in muscles, how it typically forms, and stretching (although nerve pain is my typical complaint). (Note though that it’s written by a chiropractor, who sells various supplements, which I have no association with.) You likely already know all of this information. But I thought I'd post it just in case you would find it interesting, if you thought it were wrong :), or if someone else will find it interesting too.
http://www.purehealthsystems.com/muscle-pain-relief.html

tiva

[Kathi49]

Tiva,

Thank you for the first paragraph. I agree! :) I really don't want to say too much about SSD at the moment. But suffice to say my PM is in 100% support based on ALL of my conditions which really made me happy and that conversation was just the other day. I am certain my Neurologist will say the exact same thing based on MANY conversations I have had with her in the past. But, no, I have not given up hope at all. :)

And ditto, ditto, ditto your second paragrah! I can sooooo relate to the neurological aspect of it. I have had C3/C4 fused and now C5/C6. There is one good disc right in between. But, oh boy, I am just waiting for it to go. But then again, I have also been told that it is not necessarily true it will. I almost wish the NS had gone ahead and fused it. But what he said was, "We don't fix what ain't broke!" Then like most everyone else with fusions, we have to be concerned with the levels above and below. Anyway, yep, know all about that severe burning pain and how it spreads. My Neurologist once said in regards to idiopathic small fiber PN, "You will feel like you are dying, but you aren't!" So, yes, I know the severity of that kind of pain. I am still wondering or I should say my PM is trying to work out if some of the shoulder pain is tendonitis or that C4/C5...in particular the C5 nerve root. The occipital headaches come on out of the blue but not as frequent and not as intense as they once were. Still bad enough though to warrant an 8 or 9 but I have learned what helps and what doesn't. If it gets bad enough though, it is off to the ER for some Toradol. I had one the other day and came very, very close to going to the ER but I managed to kick it out after several hours of trying different things.

I have never opted for the RF in my neck but it may be coming. And the only reason I didn't is because I was told I would need a fusion anyway. But I did have it in the lumbar this past winter; L4/L5 and S1.

But anyway, thank you if I have more SSD questions, I will certainly know who to talk with! :)

[Scar Tissue]

Hi Kathi. You have gotten so much great information before I jumped on here but if you don't mind I would like to have my say. Only you know your body, both physically and mentally and no one should be able to tell you to perform any test you know you don't need or want to take. That's a personal decision. As far as SSDI goes: I'm 44yrs. old with failed lower back surgery, I'm inoperable at this point and have been diagnosed by my PM with Chronic Pain. I applied for SSDI by myself with no attorney, no psych. test and was approved in 3mos./3wks using my lower back injury only as the factor for applying. Before my injury their was nothing wrong with me other than taking a small amount of Diovan for slight High Blood Pressure. I had to be examined yearly for my CDL driving certificate and passed every time. So the blood pressure wasn't even an issue. I wish the very best for you, and I hope your next try at SSD is the one that gets you approved. It's a tough system, I don't know why it's our own money we've paid into, but I guess they don't look at it that way. Best of Luck and you have my Prayers!!;)

[Kathi49]

ST,

Thanks so much! And you did a GREAT job! :) I am at the Appeal Point now so that is why I even mentioned an Attorney. But from what I have been told over and over and over again it is common to be denied once and even twice. Maybe not always the case, but still common.

And the part about it being our own money...right on! It galls me to think we can't even tap into it after all of the years of paying in. I had all my credits and what not a looooong time ago and way before retiring. Yet the illegals will get freebies. Oh, don't get me started about that. LOL!

Anyway, like I said, I was THRILLED with what my PM had to say the other day. Only because I THOUGHT he might say something like "chin up and carry on." But he didn't! Actually he was forceful which REALLY surprised me. Not mean at all...just very direct as if he was surprised I had not mentioned it sooner. And he had a whole lot more to say which basically had me grinning from ear to ear. So that whole conversation felt like a blessing to me. What I am trying to say is that some days I feel like I could work part time but the very next day I am smacked back down again. It is just one of those things where I think I MIGHT be able to do something only to be reminded that I just can't. So, when I feel iffy like that I am not sure what the docs might think. But my PM said the whole nature of the spinal deal is "unpredictable". I felt like hugging him because that is the out and out truth of it. And that was just the spine we discussed and really not all of the issues I have going on.

Okay, so now I just have to proceed and I do want to get with my Neurologist. If I had to say, these two are the ones that manage my meds. But all the other doctors are definitely aware of all that is going on with me and there are a couple of scripts with them.

And thank you for the well wishes! :)