Hi all! I have a question for you...Do any of you know if TOS tends to worsen, or if RSD can be brought on by "pushing through" the pain? I am finding myself wanting to push a little harder to do things during this Christmas season, but am in a constant flare...am I doing any potential long-term damage by doing this? My PM doc has cautioned me about the possibility of RSD, and occasionally the skin on my arm gets a sunburn-like sensation; I've also recently had a couple of times when my arm feels "hot" inside. I don't want to do anything stupid, and think I'd better stop pushing, but I wondered if any of you know of research on this, or even just have an experience to share.


I am trying not to get frustrated with my limitations, but at the same time, I don't want to make things worse...

Does masking the pain with meds (not that it works!) have a similar effect, by allowing more irritation to the nerves? And what about the delayed effect...if I have a good day and do more because I feel better, then pay for it the next day (or week, or month)...I assume that may have a long-term effect also.

There are certainly times when "pushing through" isn't an option..pain levels too high, arm too numb or weak...and usually when I do push it eventually gets to that point...just wondering if it really does do damage.

Anyway, would appreciate your thoughts...typing is really hard right now, but I just stopped cleaning house to ask!

That's a tough one.

I guess part of it would depend on the cause of your TOS?
An accident, fall or some acute cause where you developed sx of TOS fairly quickly -vs - a gradual build up & increase in sx like in the case of a repetitive strain type of injury.
And then there is the cases with a structural anomaly, like the extra cervical ribs or fibrous bands etc.

I can only speculate on the RSI type of TOS. Like -If you were normal before, it must be some ongoing postures, movements, and use issues.

I was looking for Sharon Butlers "savings account " analogy having to do with uses adding up & dwindling any savings accumulated during rest/rehab, but I did find some other good stuff on her site.
she must have been adding /updating it {haven't read there in awhile}
like this-
[It is important to recognize that repetitive strain injuries are a natural response to inappropriate or strained use of the body. It is possible to restore the body to a more normal state, but if the body is used inappropriately once again, the same adhesion patterns can form all over again. It is important that corrective stretches and other appropriate measures to reduce strain such as good ergonomics be incorporated into the daily life of a person who has suffered from RSI's. This will help maintain the highest level of relief and prevent future recurrences. ]
http://www.selfcare4rsi.com/understanding-RSIs.html
more here-
http://www.selfcare4rsi.com/rsi-articles.html

she has a lot of good info on her whole site and it really did help me to understand a lot as it applied to my RSI/TOS.
Like the awareness factor - listening to your body is very important!


for the RSD part - I think you either happen to get it or you don't
- but I suppose if the nervous system is "on" for a long time then RSD can come into the picture with a higher percentage.


I think your meds question/concern is pretty much right.
Part of it is that meds change your awareness of how your body is really feeling.
A question would be -are the meds so you can participate in healing therapies and self care, or so you can continue trying to carry on life as if not injured? same work, same postures and uses?

This doesn't apply to those that have extreme & constant pain or RSD with TOS-
I'm applying it more for those that are borderline or sporadic with the pain and levels of it.

Thanks for your input, Jo! My TOS is a result of an auto accident; no extra rib. I have some other issues, too...lots of shoulder injuries that were repaired surgically, ruptured discs that I just had a fusion on this summer, and some instability in my clavicle at the sternoclavicular joint. There is always pain, just varying levels, and always numbness with varying levels.

I'll check out those links re: Sharon Butler. I've read the "spoons" story, and have used that analogy...typing that note yesterday used up my last spoon, and I spent the afternoon miserable and unable to do anything. Rest usually is the best way to bring pain levels down, for me. My physical therapist said I just need to adjust my thinking to what I can do, and not keep thinking I can continue to live life like before...I guess she's right. As you mentioned!

I wondered, too, like you mentioned, whether continually firing the nerves could bring on the RSD...which is what Dr. Centeno seems to think. He's told me to not let the pain become unmanageable if I can help it...I guess that I'd better be more careful.

Thanks again for the links! Today's the day we were going to make gingerbread houses with my daughters and their friends, but both the other families are sick so we're on our own...my daughters really want me to make one, too! We'll see...we'll probably have to make mine a joint effort!

Donna

Donna,

My onset was traumatic, but from a vaccine reaction, so different in most ways than yours as my immune system actually attacked my nerves as well as the "foreign" toxin. However, I have learned a bit from the numerous Drs I've seen, maybe it will be of help to you as well.

The vaccine reaction caused a brachial neuritis, a severe inflammation of the brachial plexus. Because the pain was very high and constant for 3 weeks or so, (it didn't respond to any meds), the spinal cord changed, became sensitized. As a result, I have RSD, but it has slowly become body-wide, because the entire central nervous system is affected. The RSD began and is still worst in the original injured arm with TOS, but burning feet and pain to deep touch all over were also early signs. If all the nerve damage and nerve compression were magically fixed tomorrow I would still experience pain because the brain would still be receiving pain messages from the CNS.

That is I think why it is important not to ignore the pain and keep pushing, because you can overload the "pain gates", like the vaccine response did in my case. And undoing that is almost impossible, unless you're extremely lucky. I've tried everything there is, short of a coma treatment or thalidomide, both of which scare the pants off me. I had a spinal cord stimulator implanted 6 weeks ago and am the most comfortable I have been since Feb 2003, except for a few weeks after my rib resection when it seemed like the RSD had gone into remission.

Dr Togut talks about getting your disease to plateau - he's mostly talking about TOS, but RSD will do so as well. If you learn to accept what your capabilities are, for now, and not push back, things can quiet down, and you may find yourself in a much better position in a year or two, able to do more than you'd thought. But if you keep pushing you will keep things active and inflamed and never allow things to quiet down, to heal as much as possible, and rest what isn't. Then I think you do run a risk of nerve damage, especially if there is a scalene that rubs or scissors a nerve or nerve bundle each time you move your arm a certain way.

I could see atrophy happening in my right hand. First the mound at the base of the thumb grew flat, and became "mushy" as the muscle there shrank. The side of the thumb thinned out and between the thumb and first finger on the back became thin and stretchy. A furrow developed between the little finger and the ring finger also on the back of the hand, and the side of the hand there lost all curve. I was right-hand dominant, so it has been very difficult to lose strength and function.

I hope this helps a little, by no means will most be as affected as I have been, but wanted to help answer your questions best I could.

beth

Thank you, Beth, that does help a lot. Can you tell me something? Is the atrophy in your hand happening because of the BP damage, or the RSD? What are the early symptoms of RSD? As soon as I read your description of your hand, I glanced down at my hands. My left hand looks significantly smaller than the right, as does my forearm. I had never noticed! Is that not, possibly, from using it less, with a natural muscle atrophy? I went for an IME yesterday, and the doc measured both my arms, above and below the elbow...I'm curious what her results were. Obviously she noticed a difference, also; no one has ever mentioned it before.

I'm so glad your SCS is helping...and I will take your advice. If something hurts, I will stop. The exam yesterday gave me a day of agony, with the hot sensation in my arm (especially around my elbow) again...my husband wants me to rest today. Is there anything else I can do to keep anything from worsening?

Better stop typing! If or when you can, I'd appreciate hearing more. Thank you very much!

Donna

Donna,
I think each of us who have the TOS MONSTER harbor RSD or as some Drs will call it CRPS and it can rear its ugly head at any moment that some are fortunate never to see. If not for this site and the OLD BT and the special people who come out to help I would not be around now!!! I hope things do get better with you........... MARK-n-GOOBER