Trying so hard

[Lea]

Warning, major whine:eek:

I try so hard to keep my house running, care for my child, provide for my family, and try to keep my body in line. My body just isn't cooperating and my DH just rolls his eyes at me:mad:

All I did this weekend was vacumn my floor and (silly me) paint my toenails. Now I am in the worst episode of breakthru pain I have had in a very long time. I just saw my PM on Friday and I can't believe that I am in worse shape now then when I saw him. I have a large amount of swelling on my left trapezius which my PM couldn't treat because I have folliculits on my skin and steroids and infection don't mix.

I was able to drag myself to church to lead worship, but it was embarassing to have to be helped down from the risers by two people in front of everyone.

My neck and back are just unmanageable and not responding to the Fentanyl, Norco, Zanaflex,heat/ice or Lidoderm. Good gosh, what am I going to do? I'm only 46 and was recently told I had osteoarthritis in almost every joint I have and have recently developed high blood pressure. I'm literally falling apart and no one seems to see it or care. What's my life going to be like in 10 years?

I try so hard to rise above this pain, but I am starting to miss work alot and just frustrated at not being able to do simple things like mop my floor. Then my DH will drop less than subtle hints about how unhappy he is with my housekeeping, but he throws everything on the floor, from his newspapers, dishes, and trash.

I'm sorry to be venting like this, but I just needed to express my frustration and get it off my chest. Thanks for listening to my rant.

[Pharmacist.steve]

maybe it is time to consider Medicare disability

[debhun]

I am so sorry you are so down. But it is not all your place to keep up the house. Your DH has to help you out even if you were not in pain. It takes two these days if you and him are working. It would only be fair for him to do his part. It wouldn't take a lot for him to put his papers and dishs to where they go when he is done with them. If he would just do his stuff that would be 50% less you would have to do. I would try and talk to him about helping out a little here. What would it hurt to ask him to do his own things. I bet after he did it for a week or two he would know just what you have been going thought. Just try and see if he would do it for 2 weeks to see how it worked out. I hope you get some help some where. You just can't keep doing it.

(((((((((((((((HUGS))))))))))))))))
deb

[jena1225]

Lea, I am really sorry you are in so much pain :( and that your DH does not seem very senstive to it right now. I also find it amazing how doing just the littlest of things can make us flare! I get so depressed and wonder why I even try :rolleyes: Please try not to let anyone make you feel less than you are, even DH.

Is he normally like this, or something new?

I know all marriages are different, but, I have to tell you my DH knows darn well that I certainly do not clean our house to please HIM. I do it because he works all time, and quite frankly, if I didn't, I know he wouldn't :rolleyes: And mine does the same thing, and aggravates the he!! out of me somethimes! Just the other day I put all the empty wrappers from everything he opened in the last 2 days, and put it in a pile on his side of the bed, lol. (when he opens ANYTHING, he NEVER throws the wrappers away!)

We have this sort of "unspoken vocabulary" We both will "drop little hints" but if it was something important, it would not be said "on the fly", but in a more serious discussion. And if it is NOT done that way, than it is not really an issue. S, maybe if he really had a problem, he would bring it up, otherwise assume you are doing just fine ;)

I really hope this flare dies quickly for you! and try not to let the little remarks bother you and prolong your pain!

[Mark N]

Lea, I hope it clears up for you soon but you do need to sit down with your DH and decide where yu are right now. Can you still work, will it only be part-time, or do you have to go on disability. Since you are running your own business I don't know if you have enough years in the SSDI system to qualify for SSDI. You have to be honest with yourself and your DH about your capabilities right now. It may be that you need to take 6 months off and re-evaluate your condition. I know when my time came I talked to my wife and kids for several weeks before I stopped working.

As part of this discussion you need to find out what DH wants around the house. Then you will have to lay the law down [I have to say men are dense and if you don't say it out loud we won't hear it] about what he needs to do to help you accomplish what he expects to have done around the house. You are being overwhelmed right now and you shouldn't put off the talk about work/disability any longer.

[GardeniaGirl]

I feel your frustration - not about your husband, as i am not married nor living with someone, but with your health and your awareness of how bad off you are physically.

There is another thread here about "stable or declining" - you may want to read that as we are discussing that very issue.

My body is doing what yours is - I wish there were better answers.

((lea))

GG

[photonut]

Hey Lea:
Just wanted to send you a great big HUG. You sound like you could use one right now.I understand how you feel.I have been married for 32 yrs and after the 30th yr.I was declared permantly total disabled. My hubby now understands just how difficult life can be for people living in constant pain.I only wish you the best of luck and hopefully your dh will learn to help out a lot more.:)

[curiousforever]

Hugs.

Your hubby needs to be a little more understanding. I haven't mopped in 2 yrs now - too painful. It took awhile for him to get it - and he can live with a messier house.

Taking care of the kids is more important than housework anyday...

[Kathi49]

Lea,

I feel for you. :( It is tough trying to rise above it all! But I think you and your husband need to have a talk. And I know what it is like to miss work more and more. Really, he needs to help out! I don't know if you were or are like me, but I didn't really complain unless the pain was severe...and this was in the beginning. So, when my husband would see me up and about doing things, he thought I was fine. And the truth of the matter I was in pain the whole time. I just wasn't saying anything. That is, until one day I laid the law down as Mark said and due to severe pain.

And I do remember something my PM said. He said when you have osteoarthritis like we do (practically everywhere), it is extremely painful. But when you throw neuropathic pain on top of it, it is debilitating. I think you should tell your husband that. I know I told my husband those very words! It took awhile but he eventually got the picture.

And...I could have written Jena's entire post.

I also know what that damn Trapezius pain feels like. It took me months and months to stop that. I hope you can get some help with that because it seems when it is tight and in knots there is nothing you can do...so painful! Do you know or did your PM say what the swelling is or was? For now I would forget the housework and just have a talk with your husband....the housework can wait. Or, you can try to do as I do. I try to do one room at a time. And IF it doesn't get done. Oh, well! I will wait until a day where I feel I can kick it out.

[butterflyblooms]

Lea,
I have no more to add then what the others have already told you. But wanted to tell you that I know what you are going through, and agree with what the others sd already. The house work will be there tomorrow or next week if necessary.:)

I think that is one of the hardest things that women have to come to terms with when you live with CP. Our home is a reflection of us regardless if you are married or with a live in partner. Society, even after all these yrs with women in the work force, still looks at the woman to do all the household chores. Not every man still feels that way but I would say a good percentage still does. Which is not their fault, just the way they saw things growing up.

I guess, what I am trying to say with all my rambling is it is not all your responsibility to take care of the home. So, try to relax and take care of yourself because that is what is the #1 prority rt now. And if you can talk to hubby like the others suggested than definately try.

I know sometimes I am scared to talk to my hubby on issues I know he has a definate opinion on. So, I write him a letter to tell him my feelings, that way I know I have sd everything that I needed to say. It also gives him time to think about what I have sd before we talk about it. It also gives him time to cool down and see things from my side if he disagrees. Just a thought, I put it on his car seat in the morning before work so he can read it and has all day to think things through.


Lea, I hope that your pain is better today. If not maybe a call to the pm doc is order? Either way, take care of you and remember that you have friends at BT that care about you and sending you good healing vibes.:) :)

BB

[jena1225]

I like the letter idea since it will give him time to read and re-read. We are often better at expressing ourselves when we can do so at our own pace, not be interrupted, and are able to "speak" freely.

His reaction will depend on if you have already done this, or other methods.

If you have already been down this road, I would just not let on that it bothers you. This is not always the best longterm solution. But, I have found that some people (men?), depending on their personality, can be like children - the more you let them know something they are doing/saying really gets to you, the more they keep at it. (sorry for the generalization guys, no offense :D ) Although my Dh is very supportive, his baseline personality still remains :rolleyes:

I also know that T-spine pain very well! It is worse than all my pain, and is constant. Like charley horses all day long, throwing pain all over my back. I really hope you are feeling better this morning!

[suede]

Lea,
I have seen you around for quite a few years now and know you have given your best and then to be healthy and take care of your family and life and I give you a bug hug as you have done so well.
It's so sad that the ones we love the most cannot have the compassion and empathy to understand where we are coming from.
I agree it may be time to start seeking out disability.
I know it was a hard choice for me and by the time I finally accepted it I knew I should not have waited as it took me 4 years to get approved.
Big gentle hugs to you.
Linda

[Kathi49]

I've done the letter thing too LOL! But I ended up letting it sit for a couple of days because I think I was too shi*** in it. :eek: :) Then I rewrote it and gave it to him.

But I DO agree with Jena. Sometimes I wonder, just to alleviate their own stress, if they don't LIKE to push our buttons. I have noticed that before. So, my solution is to nip in the bud then and there OR just walk away. I guess it just depends on the issue at hand. Sometimes, and like Jena, no offense guys, it may be something so petty it is not worth a retort. Or, sometimes it is serious enough for me to come right back at him.

Once again, it is NOT about inciting a war. Actually, if I speak calmly, directly and remain firm, it just about shames him. On the other hand, if I cuss, and yes I have gone off before, it makes things 10 times worse.

Anyway, the fact remains our spouses, whether male or female, need to know just how badly the CP affects us. My husband IS supportive but like Jena said, he still has his basic personality and he IS an intense person. Not mean; but he can get edgy and come across with snide remarks. So, I call him on them. And believe me, it took me many years before I took the bull by the horns. And I think what really helped was for him to hear the words from the doctor's own mouths. And the fact that he has a herniated disc now. Not that I wish it on him. But at least he knows how intense the pain can be.

Anyway, we have kind of reached a happy medium. I try to do what needs to be done and if I can't, he will take off work and help me with whatever it may be. By the same token, I try to make his life a little easier by taking care of the small things so he won't have to deal with it. But you do have to make known your wishes because no one is a mind reader. I tried to be tough or rather quiet about everything. And my husband really had no idea how bad the pain was...until, like I said, he heard it from my own PM or had to take me to the ER. It is just something they cannot see and sometimes just can't relate to.

[Jo6]

Lea, I am sorry you are having a hard time. With all you are doing there is no wonder you hurt!! Maybe if you screamed out in pain here and there he will remember his wife is very ill!!

The notes didn't work here. K just made them disappear and pretended nothing was there, ever! I finally stopped wasting my paper.

I wish I could help, but I think maybe we all have had these times. I am 64 yrs old. but didn't stop working until 1996. I wish I had done it sooner. Just because I am 64, age doesn't mean a thing. It does say I am older than dirt, but that's about it.

Pain is Pain is Pain. Lea, I am sorry I lost my manners on your post. you have way too much to even hear such. I am truely sorry. Julia

[Mark N]

Lea, I may not be the best one to offer advice because of the problems that have come up with my wife as a result of my health problems. But I know that I understand her demons and how they effect her perception of what is going on. I may be too forgiving and she may need a good kick in the rear but I know that my disability has really shook her. It isn't easy for our spouses but that also doesn't give them the right to degrade us.

How to maintain harmony while struggling with our pain and their concerns isn't any easy thing to do. I can tell you that I have tried everything I can possibly think of, letters, short notes, emails, talks, fighting fire with fire, ignoring the cuts, etc. Nothing has worked because my disability is likely to be forever and until my wife can deal with it we will always struggle unless she walks away. I don't know about your husband and the impact of your pain and possible disability has on him. That is why I would sit down and talk about the future. Most men do better if they know what is going on and we don't do as well with situations where we don't know what could happen.

I hope you work things out with him. You have gotten alot of good ideas here. You can't control your pain so it will be a matter of how he is able to deal with the health problems you have. I would just recommend that you spell everything out for him [I told you before that men are dense and we need to be hit over the head with a topic before you have our attention] including what needs to happen from his end. I wish you the best and know that our spouses can cause us alot of problems over our CP.

[jena1225]

Lea, I do think Mark has said it very well, and I truly hope it works out for you two.

[debhun]

Mark is right. I have tried the letterers e-mails etc.. none of them worked. The best way to work with my DH is wait till he is over is little temp( he is a BT) so it is best to wait. Then I can sit him down and we can talk. That has been the best way for us. My DH knows what I can do and can't do. Thank God. But there is times he forgets and will say will you going to do this or that and I look at him and say Oh yeah right away Sir. Then he walks off and comes back and will say I got it is okay. You okay? He just forgets some times. Even that it has been years now he thinks like we were not like we are. I know I did the samething to him when he had the log loader hit him in the back of the head and cracked his scull like a web. It was 3 years before he could go back to work. We really when though he!! back then. But I remember I would forgot he couldn't do something and I would fell so bad cause of it. So I can see both sides now. I hope this helps a little.


Deb

[Lea]

My goodness! You guys are so caring. Thank you to everyone who responded, it helps to know you aren't alone. Even though I have many documented physical problems including gastroparesis, asthma, osteoarthritis, chronic bronchitis, staph, high blood pressure, and all manner of spinal problems. I FEEL like a hypochondriac and so if it bothers me, I know it annoys my DH.

We have been married for almost 14 years. He's not going to change I'm afraid, so I have to figure out how to cope. We've been to counseling at church and professionally. Heck! I'm a psychiatric nurse:rolleyes: He just doesn't get it, or doesn't want to. I've been with him and supported him despite alot of shenanigans he has pulled, but he forgets that I guess. I don't believe in divorce so I've got to work this out one way or the other. I'm not afraid to tell him what I think, but a little support would be nice. My son is wonderful and helps me as much as he can, but he's a child.

I WAS on private disability for 2 years, however because I had my own business with rounding with physicians and dictation service, I didn't pay in my SS payments:eek: for 7 years. I think I would be eligible now, but I went through hell when I was on disability. Lost my house, my DH lost his job, got foreclosed on, you name it, it happened and it was horrible.

It drove me insane not to be doing the work that I love. I can no longer do nursing, but I now have a desk job working with families and troubled kids to get them into treatment. I've been back at work for 2 years and I get so many benefits and satisfaction from what I do. I am also told everyday how much I am appreciated and what good work I do.Kinda hard to give up that daily affirmation of having worth.

It's just so scary when that pain gets out of control because you feel so helpless.

Thank you again for your support. It really helps me get through the tough days.

[Kira]

Lea,
Even though I have many documented physical problems including gastroparesis, asthma, osteoarthritis, chronic bronchitis, staph, high blood pressure, and all manner of spinal problems. I FEEL like a hypochondriac and so if it bothers me, I know it annoys my DH.

I have a hard time with this. Tons of documented medical problems from my mito (recurrent rhabdomyolysis, anemia, gastroparesis, secondary fatty acid dysfunction, scattered CNS signs, funky EKG, pretty much normal echo except when I had that pericardial effusion). But I still feel like they are going to say "it's all in your head."

[suede]

Lea,
I think it is great that you have a job that you can do and find so fulfilling.
I never had a real job, I always worked in food service, it was very hard work physically and emotionally, but I always wanted a job that I could make a difference and I had planned on going back to school before this happened and going to work in the domestic violence field, out of the question now, I finally got my SSD through.
Even though I fought for 4years to get it, it was still a blow to the ego.
I know there is times when I feel like you that this must all be in my head and I should be able to just get over it, so not going to happen.
My DH has been so fantastic through this, however as more time passes I can see and feel the toll it is taking on our relationship, though he tries to be careful not to hurt my feelings, I know our relationship is not what we want and often I'm not sure it ever will be again..
Not very encouraging words, I'm sorry.
Know however that you have so much to be proud of in yourself and try not to let his attitude take it away from you.
Linda

[Pharmacist.steve]

Lea...

Medicare disability .. you have to have paid in 40 quarters ( 5 yrs) out of the last 80 quarters ( 10 yrs)

[curiousforever]

Lea,

I have a hard time with this. Tons of documented medical problem from my mito (recurrent rhabdomyolysis, anemia, gastroparesis, secondary fatty acid dysfuntion, scattered CNS signs, funky EKG, pretty much normal echo except when I had that peridacardial effusion). But I still feel like they are going to say "it's all in your head."

Me too. One doc says it is soma something or another - which I think is another way of saying it's all in your head - all cause they can't find a freakin cause for my PN - yet most cases of PN they cannot figure out why. (although the doc said that it's not meaning I'm a nutcase....but it's hard to differentiate the 2)

I've decided to donate my body to science when I die. Maybe it could help someone else.

[jena1225]

CF, I think I found what your doc may have been talking about: "Psychosomatic"

http://www.surgerydoor.co.uk/medical_conditions/Indices/P/psychosomatic_disorders.htm

It seems like it basically means that one can psycologically bring symptoms of an illness and actually make it worse...

We know you are not a nut case :p

Lea, yes, they DO have short-term memory loss big time. Perhaps it is a good time to refresh it?

[Lea]

Lea...

Medicare disability .. you have to have paid in 40 quarters ( 5 yrs) out of the last 80 quarters ( 10 yrs)

Thanks Steve. I actually have 4 yrs paid in from the last 10 years, but I'm not planning on applying for disability if I can help it. I do have LTD bens from my current job. Right now my job is using FMLA to insure I can't be penalized for my frequent doctor's appts and the half days I occassionally have to work. They are also good at letting me make up time if I'm able.

They have been very good at accomodating my disability with special chair, blue tooth headset phone, foot rests for my desk, etc. They know I have to get up every 30 mins and walk. They call it my "hall monitor" duties:p

My supervisor is encouraging me to take some time off which I will as soon as I get my new partner trained. Just hoping I can make it to the first week in July so I have enough days to take a week off. In the meantime, if I have to come in late, because mornings are the worst, then I can do that.

I feel old, but I know that I am young even at 46. Most people think I am in my early 30's proof that not smoking or drinking does pay off.

Hopefully I will have enough quarters paid in before I completely fall apart.

[Lea]

Linda, Kira, CF, and Jena,

I think that the most stressful thing for me is struggling with feeling like a whiney psychosomatic. I had several medical problems that took a long time to diagnose, but not before I was actually accused of making myself sick or it being "all in my head." Eventually the real problems were identified, but it was such a battle to get the right diagnosis. I am tempted to make a guest appearance on Discoveriy Channel's "Mystery Diagnosis" program! Now I have a weird skin infection with probable staph and I'm on 2 months of antibiotics. I just learned my new GP is moving with her husband, but not before she dropped the bomb of sending me to an infectious disease specialist to put me on an antibiotic I never even heard of! Another mystery infection that my dermatologist is scratching his head over and know one can explain. The story of my life!

It's crazy making to have so many things wrong with you at once. Then add my recent pheocromocytoma tumor scare and add two more BP meds to my regime and it really looks like I'm a nutcase:rolleyes:

Shoot, if I'm sick of hearing myself complain, I can't imagine how those who are around me feel. Especially when suddenly I will yelp out for no apparent reason. I had to warn my 2 new coworkers that I'm like a squeaky toy that gets stepped on at the oddest times. And don't even get me started about how anxious I get if I have to call in sick:eek:

[curiousforever]

CF, I think I found what your doc may have been talking about: "Psychosomatic"

http://www.surgerydoor.co.uk/medical_conditions/Indices/P/psychosomatic_disorders.htm

It seems like it basically means that one can psycologically bring symptoms of an illness and actually make it worse...

We know you are not a nut case :p

Lea, yes, they DO have short-term memory loss big time. Perhaps it is a good time to refresh it?

Ok - It was somataform
http://psyweb.com/Mdisord/jsp/somatd.jsp

But just cause they can't find the cause of the PN _ most times they can't. DSo am I crazy?

[Lea]

Ok - It was somataform
http://psyweb.com/Mdisord/jsp/somatd.jsp

But just cause they can't find the cause of the PN _ most times they can't. DSo am I crazy?

YOU are NOT crazy!! It amazes me how if the doctor can't figure it out, it's all your fault, all in your head. Well don't take that from any doctor. There is a reason for your pain. And yes, it is in our heads because the brain is the one signaling us that we are having pain! You can't cut your head off from your body. What affects your body, affects your mind and vice versa.

[curiousforever]

I know. I've been having problems with the nerves in my arm since I was pregnant with my 8 yr old.

The decompression surgery for my ulnar nerves helped for 1 1/2 yrs - then the nerves went wonky again - but they aren't compressed. Nerve study - one shows damage - another shows no damage. RF test comes back positive, then negative...

There is so much they don't know about nerve pain and the brain....

Thanks for saying I'm not crazy! I had about 4 months without pain (after surgery - then gall bladder started acting up as well as an ulcer) and they were GREAT. I want that back!

Now, about your situation....please think about sitting him down when you're calm - and tell him what you need help with and why. Men are not too good at getting the hint....

Sorry to post so much about me on your thread!

[Kathi49]

Lea,

I think I could have written one of your posts. :(

I have actually said to my husband that I should make an appearance on "Mystery Diagnosis" as well. :) It IS such a battle. I was thinking yesterday...well, do I get the lumbar/sacral thing taken care, go to pelvic PT...or have my knee looked at again?

Anyway, I know what you mean by talking about yourself. But don't worry about it here on this forum. :) We are all here to be supportive. And I also know how it feels to call into work sick. My anxiety levels would go sky high! OMG! I would feel the anxiety come on due to the pain, then the nausea would start. And there were many times I drove to work only to sit in the parking lot and just say...I cannot do this! And, if I did make it in, I was so afraid of passing out (from the meds) that I would have panic attacks and then I would be sent to the ER. I just got so sick and tired of it. So, I know what you mean.

Sorry, I also don't want this post to sound "all about me" it is just that I can relate to everything you are saying.

Oh, and our husbands!!! Geez! I just had a talk with mine just now. All I said was that my leg hurts and probably due to tending to the sick dog. But his response was, "Well, I hurt too!" Oh, well. We are just on different wavelengths because he is still working and I'm not. So, my concerns ARE going to be different than his. So, I will be faced with another day of pain and trying to get my dog to eat. All I can say for now is hurry up Thursday! I have a list of questions for my PM.

Hang in there, I KNOW this stuff gets old!!!

Oh, and cf, I went through the tons of testing for PN. No cause was ever found and another reason I had a tiff with my Neurologist. So, now she is saying Central Pain Syndrome. Of course, there are no tests for that...but Lea is right...our brain just keeps on sending the signals.

[Mark N]

Lea, one of the good things about coming here is we can talk about our pain and condition without feeling like we are boring people. It is hard when I am out and people ask how I am doing. I have decided to just say like usual and not go into details. When I am asked details it is hard to talk about it because it sounds like I am making everything about me. Coming here keeps me from feeling that way when I talk about my CP and spinal issues. It is necessary to have a place like this because even our families tire of hearing how much we hurt. I have quit saying much about it unless I am have a particularly bad time and need to let them know that I won't be able to do something because of my increased pain.

I hope you feel like you can come here and complain all you need to because we know what life is like for CPers.

[jena1225]

My T-spine, and now shoulder nerve pain! :rolleyes: is from my MS. So, it is a little easier for people around me to understand, but not always since Pain was not known to be a "significant" sx of MS until last couple of years. And most people are not educated on the illness. But, although having a CNS Documented Disease makes it easier, it STILL has to be explained, so I can understand how YOU must feel NOT having a dx to throw out there.

But, that is not all my pain, as I have so many lumbar problems now, where that is even hard to explain b/c what I always here is "oh yeah, I have some bad discs, aches and pains too! but just have to push past it :rolleyes: " Like my old Neuro said "Oh, everyone has some sort of bulged disc, or other probs and they do not even know it". Well, they are not ME!

Well, their issues may just not be as painful as mine, only b/c they ARE able to do that. Or, I am a big wimp, but I just don't think so anymore. I am giving myself some more credit these days!

I used to complain out loud all the time, and I THINK I subconsciencly wanted them to KNOW I was in pain. If I did not complain, they might think I am fine. I know, silly, but I have, however, found that the less I complain out loud, the more they ask how I am feeling, and I just say "same". I don't say better b/c MY family takes that as I am HEALED! :rolleyes:

So, I have been quite MUM lately, and I like it better b/c it has given ME the confidence in myself to know how I feel, and it doesn't matter what they all think. I mind game I suppose I did with myself, but it worked :D

Oh yeah, Mark reminded me, lol I DO need to complain and whine sometimes, but HERE is where I do it now :) :)

[Lea]

:confused: But, although having a CNS Documented Disease makes it easier, it STILL has to be explained, so I can understand how YOU must feel NOT having a dx to throw out there.

But, that is not all my pain, as I have so many lumbar problems now, where that is even hard to explain b/c what I always here is "oh yeah, I have some bad discs, aches and pains too! but just have to push past it :rolleyes: "
Well, their issues may just not be as painful as mine, only b/c they ARE able to do that. Or, I am a big wimp, but I just don't think so anymore. I am giving myself some more credit these days!

:)

Jena,

I assume you are talking to CF about not having a diagnosis yet. I have plenty to throw around. My pharmacist asked me the other day "Lea, Just exactly WHAT is wrong with YOU!":confused: She genuinely wanted to know, so I wasn't offended at all.:)

I try not to complain at home, but the shooting pains make me a squeaky toy and I yelp out. I was awakened at 4:30 this morning with pain in my L-spine. I was doing pretty good in that area until this past weekend. My neck is awful and I have put off surgery. When I told my PM about the rheumotologist being impressed with the bone spurs in my feet, he chuckled and a little too gleefully said "Did he see your neck films?! He'd REALLY be impressed if he examined your neck!"

I have no problems with my neurosurgeon and PM believing me. It's just embarassing to talk about my multiple other problems that seem to be happening at the same time. Like my current pain flare, night sweats, fever, new onset of high BP, and the staph:eek: It's like OMG!! Whatelse could go wrong? It sounds crazy, because my body is crazy, which makes me sound crazy, and FEEL crazy!

Kathi,

Maybe we could both apply to Mystery Diagnosis together:D

CF,

Hang in here. Eventually a cause for your pain will be found.

Mark,

As always your advice is right on and much appreciated.

[jena1225]

Lea, are you talking about CF not having a dx, or me? Sorry, did not quite understand :(

Anyway, I do know what you mean, I grunt and moan still, trust me! lol.

I know exactly what you mean about not wanting to bring up all your problems, as I know I have left things out when I talk to my PCP, only b/c I guess my other one's either don't cause pain, or are not urgent right now. But, yours are! especially new high BP and staph, so don't be embarrassed at all, and make sure you keep letting them know!

[Lea]

Originally Posted by jena1225
But, although having a CNS Documented Disease makes it easier, it STILL has to be explained, so I can understand how YOU must feel NOT having a dx to throw out there.

Jena,

I was talking about what you quoted above.

After 15 years of weird illnesses, I am tired of talking about my health. It just doesn't make sense. I started having joint pains at the age of 9. I was told I had JRA, then I was told I never had it and the first doctors were wrong, and on and on it has gone.

I needed to trade my body in a longtime ago, but couldn't find the recycling plant! :)

[jena1225]

Oh, sorry. I guess I worded it wrong :o Besides my lumbar issues/pain, I was refrring to the dabiltating pain I have from my MS. I have had MS for 14 years, but am now declining since my last relapse in May of 06 which lucky me, brought Extreme pain along with other things. I hope that makes sense!

[Kathi49]

Lea and Jena,

You guys are making me smile. I wish I could go on "Mystery Diagnosis". Either that or have Dr. House throw me to his team and do lumbar punctures LOL! Just kidding. But darn it...I am sooooo tired of going to this doctor and then that one. I love my spinal PM though and so far he seems to be the only one that really "gets it". My Neurologist is good but has a "tude" sometimes. And, well, the surgeons are just that....surgeons. Anyway, you don't know many times I wish they would just hook me up to something for a week and get it ALL figured out. But that is not going to happen. :) And after today it is PT next week. And I am just going to say it...my butt will be hurting from driving there and back. And it all stems from every one of them being very specialized.

And, yes, I hate talking about this all the time. Last month I decided to take a reprieve for a little while from doctors just so that I could have some time to myself even with some pain. Now that I have regrouped, time to head out again.

And Lea, I DO understand about the multiple conditions. I get one somewhat straightened out and then up pops another one. I was laughing about your neck...not in a mean way mind you. But I have heard the same thing. And then for my Neurologist to say she "hated surgeries like these" just set me free. I mean, what was I supposed to do? Sit there and wait for my arms to die off? I guess in her mind I should have taken med after med in HOPES of my discs drying up and going away LOL! Oh, and the night sweats...having them too...but I know why. So, that will be yet another discussion with my ob/gyn and God only knows if I need prolapse surgery or not. Anyway, I am trying hard not to go "mental". It DOES get crazy and then I feel like I am not making any sense. So, it is off to the PM today to vent some more LOL! And I have to find some kind of humor in all of this so talking with my PM helps because he is a goofball. It is pretty sad when you look forward to the craziness of a PM appointment. But just talking with him makes me feel so much better. But he has told me...you are NOT crazy even though sometimes I feel I am. :)