It’s been a long rough night…

[WellLovedMom]

I’m going through another rough patch. With fall comes the weather changes all of the time, which sends the pain through the roof! (For me ANY barometer change hurts.) I’ve been having a rough time sleeping with the pain, and I don’t want to up my meds (I’m on MS Contin 30mg 3x daily, Valium 2mg 3x daily, Nortriptyline 70mg daily, Zanaflex 4mg daily, and Inderal 80mg daily.) I’ve had 5 knee surgeries, and on top of the RSD, I STILL need a total knee replacement. So far we’ve put it off because I’m too young (39) and the silly things only last 7 to 15 years the doctor tells me. There’s no cartilage left, just bone on bone, and massive bone spurs everywhere. I injured my knee when I was 15, and got RSD at 18, so I sure feel old and tired!!! I’ve been on Social Security Disability for the past 3 years, and am frustrated and worn out.

I’m seriously considering asking to have the total knee replacement done now (I have to use a scooter to go anywhere besides walking in the house, and I have an 8 and 10 year old). I’m scared to death of the potential surgery and quite freaked out about them removing part of me (the knee). I know it sounds silly. I’ve gone through 5 knee surgeries, 1 shoulder surgery, and 2 foot surgeries, so it’s not just the surgery that has me freaked out. I have this terrible fear that something will go wrong and the knee replacement won’t work, and that I’ll loose the lower part of me leg after the surgery. I’ve been trying to put off the replacement as long as possible, hoping that there was going to be another new option that would come along, but the pain… well we all know about that.

On a positive note, I read somewhere (can’t remember where now…) about Hyperbaric Chamber as a treatment for RSD and that some people have found relief. Has anyone tried it or read much on it? I figure that until I have the knee replacement, it’s silly to try to find help for my RSD since I’ll still have terrible pain from the massively damaged knee.

Thanks for listening, and any thoughs would be greatly appreciated.

[Diamon Lil]

Hello WellLovedMom: I am really sorry to hear you are having so much pain. RSD is bad enough without all those additional problems that you have.

I don't know anything about the hyperbaric chamber treatment but I read on a forum that it helped some people. I hope they read your post and contact you.

How on earth do you manage taking care of a family. I admire anyone who has RSD and still manages to work and/or raise a family.

Wishing you good days without pain, Lil

[kathy d]

I am so sorry to hear that you are having so many problems along with the RSD. I feel for you. I went to the University of Pennsylania Hospital in Philadephia, PA on 7/27/05 for HBO treatment. I had to go through extensive testing for heart, blood, chest x-ray, ENT checkup, etc. only to be told that they would not do it because I did not have an open wound. They told me to come back in a year if I was not any better and they "might" do it for "compassionate" reasons! Well, I was not too happy to hear that message. I have some brochures on it but cannot find an email address. I don't know where you live but here is their telephone number 215/898-9095...that is the phone number for Dr. Kevin Hardy the physician that I saw there. It was pretty neat there. I felt like I was going "20,000 Leagues Under the Sea" or something. It seemed futuristic to me and was really interesting. I have another telephone number for you to call. It is 215/898-9095 and I spoke to Wendy there...maybe she can mail you out some information on it. If you are claustrophobic then this treatment is not for you. Their chamber is 24 feet long by 10 feet wide and has chairs with oxygen in them. You keep increasing the pressure until you are about 200 feet underwater. There is a nurse that goes in there with you to keep checking on everyone. Best of luck to you and your family.
Take care,
Kathy d.

[alphacentauri855]

Hi mom..I know what you are going through when it comes to sleep..I was able to get a script for Lunesta..I take it about 10 minutes before bedtime..It does help with getting me to sleep..I can't say it keeps me sleeping but it deffinetely helps..I have RDS full body. I injured myself October 1998 and developed RSD in my injured arm but then within a couple of years it took over my whole body..It even has started affecting my face with swelled eyes and facial spasms..You may want to ask your doctor about Lunesta..Unlike Ambian where you need at least 8 hours of sleep, with Lunesta you don't have to be that exact..Hopes this helps you. We here are in for another bought of snow starting tomorrow and going thru to Tuesday..Temps have been it the single digits and at night in the minuses..right now though it's not bad at 21 degrees..Though the cold doesn't affect me as it does with a "normal" person...Depending on what my body is doing I've walked outside in the snow barefoot to get my mail and I didn't even feel the cold on my feet or body..I especially need to be cautious when handeling anything hot..burned myself a few times because I couldn't feel it..OH THE WOES OF RSD!!!!!

Good wishes for you
Dee

[Barb2406]

Well Loved Mom,:)

Just thought I would let you know of a treatment that my sister had for her bad knees. She had I believe either 5 or 6 injections into her knees of something made from rooster combs sorry I don't know what they call it. I just spoke to her yesterday and she said the injections really helped, she can't run a marathon or walk for hours but it did decrease her pain and she
can now at least have some sort of life. She also was told she had bone on bone. She is 55 and they wouldn't do a knee replacement on her either,they said she was to young. You might want to ask your doc about this treatment. Food for thought anyway.

Hope this was helpful.

:D

[kikipappy]

Hello.
Have you ever had any Synvisc injections for your knee? I have a friend with terrible knee problems but who is too young for knee replacement and she swears by these Synvisc injections. They can't be given too close in time but I can't remember how many months each injection has to be separated from the previous injection.

This is off the subject but may I ask if you struggle with depression? The reason I ask is that my pain management physician called me about 10 days ago to tell me that he had received an alert from my pharmacy plan that there is a potentially serious conflict between Nortriptyllin and Inderal(Propranolol) and that he wanted me to discontinue the Nortriptyllin for one week and see how I do off the medication. The reaction between these two drugs is a serious worsening of depression. I was being treated for not only pain but for depression with the Nortriptyllin. It was also prescribed to help me sleep better. I have been off of it since last Friday and I can already tell the difference in my pain level which has increased a bit. Also, I have been unable to sleep more than 4-5 hours in 3 days total but I definitely notice that i'm not hung over or as mentally foggy as I was. If I have to go back on the Nortriptyllin, then I'll talk to my cardiologist about decreasing or discontinuing the Propranolol. I take that for a condition that causes tachycardia. It is a dysautonomia called POTS-postural orthostatic tachycardia syndrome- a form of orthostatic intolerance. I've been on these 2 meds together for the last 7 years! It's hard to believe that this was the first time that anyone noticed they can be a bad combination for depression!Ask your doctor about this potential interaction.

I hope that things will get better and that I can stay off the Nortriptyllin. The timing of this is bad as I am recovering from cervical spine surgery at C6-7 and have been experiencing an increase in the sharo, shooting nerve pains down both arms. The spine doctor just told me last week that I didn't have to wear the rigid brace and could switch to a soft brace to wear as needed. I thought I was doing ok without it but the pain just kept increasing so I started wearing the soft brace again. My arms feel much better with the brace on. He also ordered a bone growth stimulator to be worn 4 hours per day to help with new bone growth of the graft. The shooting pain down both arms is caused from the movement I still have within that vertebral space as the bone hasn't grown enough to fill it in completely and be solidly fused, thus preventing movement in the joint. That's what causes the nerve roots to continue to be irritated. Next autumn I will have additional levels fused.

I really hope things get better for you. It's so hard to deal with RSD and try to do everything expected from you as a wife and mother of young children. My youngest child was 12 and the oldest of the four kids was 17 when I developed RSD. I tried to keep myself busy and distract myself from the pain by volunteering as the PTA president in the elementary school, the vice-president at the middle school and a committee member of the high school PTA and co-chairman of Project Graduation! Oops! I almost forgot- I also volunteered as the uniform chairperson of the marching band Music Boosters club. I was determined to stay as functional as possible but spent many painful days from overdoing it!

Ask your doctor about Synvisc as it may be a possible alternative to surgery for you if your condition meets the criteria for it's intended use. If you are bothered by depression, I'd definitely ask your doctor about the Nortriptyllin and Inderal. I hope I've been helpful in at least a small way.

Warm personal regards,
kikipappy

[WellLovedMom]

KiKiPappy,

What timing for your reply! As for the Synvisc, yes I have tried it. It turns out that 5% of the population has an alergic reaction to it, and you'd never guess what group I fell in. Even though the first time was a dismal failure, two years later I thought that maybe it was a fluke, and decided to try the treatment again. Let me simply advise anyone who has worsening symptoms after the VERY FIRST injection, STOP TREATMENT!!! There is no cure once they inject the stuff in. You have to wait the 4+ months for the stuff to work its way out of your body. The pain went from horrid to unbearable (as did my mood for those 4+ months). The one thing that it did as advertised was make the joint nice and moveable. In fact it was SO moveable that it kept collapsing on me and down I would go! With all of this said, however, I would STILL advise people to try it. Your knee will be a bit irritated for a day (maybe 2-3) after the injection, but if it hurts worse by the appointment for your next injection (mine were scheduled 7-10 days apart for a series of 3 injections) STOP TREATMENT! I was NEVER advised that some people have adverse reactions, so I didn't know any better, and was hoping for a magic bullet. Actually, the nurses at the Kaiser Ortho department had never heard of ANYONE having adverse reactions either, so it was new to all of us.

(FYI, I have also had several Sympathetic Nerve Blocks, which have helped. My anesthesiologist uses a Floroscope to guide the needle, which REALLY helps. Another doc subbed for her once, and the procedure was MUCH more painful AND less successful.)

Now, for the drug interaction info, THANK YOU!!!! I too am on both drugs, for the same reasons. I had a resting heart rate of 120 -130 (for over THREE YEARS), and it was simply getting too painfull to deal with. The chest pains HURT, and I was SOOO tired!!! They only allowed me less than 5 minutes on the treadmill test, even though I hit the target heart rate in 2 minutes. (FYI, the heart tests came back just fine, and I even have nice clear arteries.) My primary doctor said he had no idea what was causing my tachycardia, but just tossed some medications at me.

This past year has been pretty bad, with my tachycardia worsening to the point that walking around the house WITH MY MEDICATION leaves my heart rate around 110. My vertigo has also been getting worse (and where there's vertigo, there's Motion Sickness!!!) I have to say that the key that caught my eye in your reply was the worsening of depression. My family would most likely describe me as a spitting viper over the past few weeks. I do at times have a temper, but usually I've been a fairly positive person. I've had quite a bit of added stress and frustrations with my health (I seem to be getting worse, not better), but the depression has become VERY serious. VERY SERIOUS. I'm on 90mg Nortriptyline daily. I will talk to my pharmisist on Monday about any possible interaction. I think I'll make sure to consult a NON-Kaiser pharmisist too:rolleyes: . The first two heart meds they tried had side effects I couldn't tolorate (forgot the name of the first one, but I was so reved up that I was awake for two days straight, then only slept maybe 3 hours before my next few days up). The next one was I believe Atenol (spelling?). Although it is also used to treat migraines, it triggered mine, and over two weeks, I was in bed 10 days with migraines. So, with all of the trial and error, I LOVE my Inderal SR (or LA). I take 80mg twice daily. Tried the short acting version, but again, side effects- mainly, it didn't do squat for my tachcardia (my short term memory is pretty bad, so the fact that I couldn't remember to take it multiple times daily probably had something to do with the poor effects).

Without the Inderal, I also have another strange symptom. Just walking around the house (such as putting away a basket of clean laundry) is EXHAUSTING, and my temperature will spike up to about 100-101 degrees F. I can lay down, put on a light-weight nightie and drink a cold bottle of water and bring my temperature back to normal within about 30 minutes, but it is TERRIBLY uncomfortable, and SO FRUSTRATING! I am ALWAYS too hot anyway (yep, I'm also overweight too, which can account for being too hot).

I have also started seeing bright red patches on both arms, which if touched are really hot, like a very bad sunburn. At first they didn't bother me too much (I am on morphine and after throwing Naproxen into my daily meds for arthritis, my knee pain has been doing better) but the arm pain is increasing. It feels is feeling more and more like someone is holding a blowtorch to my arms. The pain lasts even after the color has changed back to normal skin tone. The redness comes and goes often, usually only lasting around 30 minutes at a time, but occurs maybe 2-4 times daily. I NEVER had any skin changes with the RSD in my knee (or any swelling) - which may be why it took almost 20 years to diagnose. The red patches are spreading. They were just confined to my upper arms, but now have started to show on my lower arms, and a bit on the backs of my hands. It hurts to be touched, and I have to go sleeveless due to the pain of clothing on my arms (and being too hot). After the redness goes, I have VERY faint purple splotching on the upper arms, but it fades within maybe 10-20 minutes.

I assume that the RSD has spread, but I don't have any doctor to turn to and follow up with. I am in the SF Bay area, California, and have Kaiser medical insurance. My primary doctor sat me down and explained that I simply have to accept that I'm not like other moms. I have RSD, for which there is no treatment or cure other than what I am on. He also added the additional diagnosis of Chronic Fatigue Syndrom about a year ago. He has explained that I have to be careful not to over-do it, or I will worsen my condition. I have to "find the balance" of how much I can do. I am critized by my mother for being "horribly selfish and just plain lazy" when I try to manage my health by resting when I'm feeling bad (which in her defense IS closer to 5-6 days out of 7). My poor husband and kids end up taking care of me, rather than me being able to take care of them. I SERIOULY question Chronic Fatugue Syndrom, as my symptoms worsened and left me disabled 3 1/2 years ago. Many RSD and CFS symptoms do seem to overlap. Maybe I do have both conditions, but if so, any suggestions on dealing with the complete exhaustion, vertigo, tachycardia, and feeling just plain terrible (that may be the depression). Just sitting upright in a chair for over an hour is too much, and I have to lay down to rest my body (not sleep, just rest the muscles). My doc (who has NOT seen the red patches) says that the reddness is probably nothing, and my 100 degree fever (taken by his nurse), he just brushed with "oh, looks like you always have a fever when you come in." I have to wonder if my pushing myself to try to do more (which has only resulted in extreme stress, frustration, and depression) has helped my RSD to spread, or flaired my questionable CFS.

Anyway, any comments, feedback, insights, or just a laugh would be greatly appreciated.

Thanks!!!

[rainbow422@aol.com]

Hi Well loved Mom!

I have a tooooon of HBOT information built up in my favorites, but I cannot remember if I am able to post links in this group.

Someone let me know please????

I will post if it is OK

(keep in mind a few are like promotions for a doctors office, but there is useful information in them).

This is a therapy I want to try but at this point I cannot get anyone to try for insurance approval. They will not even try....

Anyways, my hands are spent

Gentle Huggs

Rain :cool:

[LuvNAngel]

Hi Mom
This is all new to me. Ive been in alot of pain since 1999 but was just recently diagnosed with RSD. I was a Respiratory Therapist before I got injured at work doing CPR. Then recently I went to a pain clinic in the bay area, I live in Carmel, that was awesome. I learned quite a bit. The doctor is a specialist in RSD and pain. I know Kaiser has their own way of treating people but they sometimes go outside of their facility for patients. It certainly was worth it to me. We exercised about an 1 1/2 hours a day. Total workout on the machines. We learned relaxing skills, nutrition, cognitive thinking. About the differant meds. I felt honored to partake in this, it certainly helped. That and the knowledge that I gained in my medical field I think has helped me alot. I know depression can cause all the tiredness, the insomnia, moodiness, you name it. Ive read articles on the meds and theres a balancing cocktail of meds that they are using now. Im not sure what you're on but you might want to have your anti-depressants looked at.

My experience with patients that have had knee replacements has always been positive. I can't remember a patient telling me it wasnt worth it. I think I know how you must feel just because of the thought of having another surgery, I had 7 on my back. I can't imagine ever going through it again. But, deep down inside I know, if it was one way to help relieve some of this pain I have, then Id go for it.

I feel for you, Im a single mom of three. I look back and try to remember the past few years with my children and its been me in pain, in bed. They mom'd me alot! I hurt, I know we all do, but Im more alert now. I relax better and my mind seems clearer. I still get moody, dont we all. I was on all these pain meds and I tried everything, the neurostim implant, too many injections I exceeded the max that they allowed to give. When I went to the clinic the first think I did was go thru detox at Stanford then straight to the pain clinic where I lived for a month. Im now, still, narcotic free. I take alot of pills. But my mind is clear for now. I get really depressed, I lost alot when I hurt myself. It took awhile to say that without crying. Im better then I was.

The pain clinic I went to is in Redwood City if you're interested. I just take one day at a time now and wow what a great day it was today! 81 degrees! gl to you.