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

The atrophy has been a mixed bag. Within days of getting the shot I had atrophy of the trapezius and other muscles -my mind's gone blank again -
rhomboids and levator ......... something, anyway, my shoulder dropped close to 2 inches. Shortly afterwards is when I first started feeling numbness and tingling in the hand and the fingers started growing cold. I also had a lot of twinges in the scap area and shooting pains in the triceps.

The biceps, triceps, trap and other upper back muscles atrophied due to nerve damage from the brachial neuritis. I've been told that damage is probably permanent. No PT or home exercise has ever helped. The hand atrophy is mostly due to TOS, I've had many EMG's showing nerve compression. When I had the rib resction done, an extra scalene was found, wrapping around other muscles, running through the wrong places and very close and tight under C-8, so that every time I moved my arm that scalene made a sawing motion against the nerve. The surgery helped relieve compression on the lower and middle trunk of the BP.

I still had sx in my hand and the atrophy continued there, and six months later another EMG showed a lesion of the medial ( I think) cord - sorry, I don't remember these things well without checking my papers, and I need to leave in a minute, so I'm "winging it" Anyway, this time the compression was at the pec minor, and I had surgery to relieve that. Again, it helped, but the incision got infected once I returned home, no local Dr would touch me for weeks til I finally begged enough after it had abcessed twice and 2 rounds of antibiotics hadn't done a thing, and 10 weeks after surgery it was still nasty looking. I'm sure I have quite a bit of scar matter between that and the rib resection, and there may be other areas of compression still, who knows?

The neuritis also damaged the nerve that runs under the arm and down the side of the ribs, and branches from the underarm over into the breast. That nerve was damaged or irritated more during the rib resction and causes crazy pain at my elbow. The elbow pain and my hand going icy cold several times a day have been my biggest crosses to bear, they are so hard to ignore. Luckily, the SCS is helping some with the circulation in my hand so I don't experience as much of a temperature change, or as often.

I carried my right arm for the first four months, as the whole thing hurt so much, and at least the drag on the shoulder was less that way. I did do several weeks of PT and saw a chiropractor and a massage therapist, but outside of therapy I carried that arm constantly, like the lion with a thorn in his paw :icon_wink: When I finally got my PCP to send me to a pain Dr, the first thing they had me do was start using the arm again. I probably lost some muscle due to that. Otherwise I've used it daily as much as I use my left, but no heavy lifting, vaccuuming, laundry, it's extremely painful to apply any force with my right hand due to the RSD, so that limits me a lot.

I did have really good upper arm strength prior to the injury, always had since I was a kid. I detassled corn during summers as a teen, waited tables before and during college, taught preschoolers before having my own kids. My first car was a Mustang, it was a stick shift without power steering or windows. That alone built strong shoulders!!

I have TOS on the left as well and the muscles are wasting exactly like the right hand, around the thumb and first finger area, and at the little finger.
So I drop things with both hands

SIgns of RSD - pain to touching things, or being touched, that was real early, temperature changes, like the icy cld that seems to start from the inside of your hand and spread out, an ache deep in the bone, almost like acid eating away at it, and heat bursts, almost like sunburn, appearing anywhere on your body, lasting from seconds to half an hour or more.

However -- some of these things TOSers will feel because their sympathetic nervous system is overstimulated, or overwhelmed. That doesn't mean you WILL have RSD. But when you get these sx it may be a sign you're overdoing things and your system needs a rest. If you ignore them and keep pushing on without listening to your body they may become worse and more frequent and at some point become truly RSD. RSD is awful- there is no cure, not much even helps.

Please take care of yourself, ok? It's a hard time to not overdo, I know. Make some lists, cross out everything that isn't essential, delegate everything you can, save your energy for the things that are truly important. You just can't do it all, and if you try, you won't enjoy any of it.

I'm learning simple really is better in lots of ways, for the whole family. Well, I need to go, talking way too much here!! The other thing I try to do is not type too much - sure blew that one today, didn't I?

Nice to meet you!

beth

Thanks, Mark and Beth (sorry you had to type so much, Beth!) I don't think it's RSD...I did a little reading on it this evening, and I don't think I have enough of the diagnostic criteria. I think it's just plain old TOS and/or BP injury (as of now!); the atrophy is probably because I don't use that arm as much as the other one. I appreciate hearing your story, Beth...you've been through a lot!

But I am going to take all your advice and give things a rest and see if I can get the pain under better control. I do think I've been pushing too much...and I don't want to bring RSD on by keeping the pain levels so high.

Thanks again...it's nice to know you guys are here, and understand! I'm so sorry you all are dealing with this, though!

Donna

YOu sound just like me in my first year, while I was still working. Thanks to the doc not knowing what he was doing, I didn't get any therapy, and I sure should not have been working. I am now bedridden. That delayed effect you talk about is true in two ways - one, a few days later it rises from whatever you over did, and, if you really push through pain for a year or two, then you get a nice couple or more years of horrific pain like I've had. My condition would not be so entrenched and painful, rendering me totally bedridden and needing my fiance and nurse to care for me in every way now, if I hadn't pushed through that last year of working. I KNEW I was hurting myself, but never imagined such a cureless condition existed as this. I didn't know about this before.

So those are the words the world renown surgeons and neuros tell me - "entrenched, chronic, too many years of pain" when they talk about my future, and conclude that my damage is cureless.

Other people on this site get sick, get therapy immediately and stop work, get surgery within 6 months, and more therapy and seem to do pretty darn well compared to me and a couple of others who lagged behind in care.

And TOS IS the feeling that your skin is burning. Although TOS and RSD have symptoms that are the same, that hot skin is a certain RSD feeling that went from my right to my left to my back to my thighs and ankles. TOS doesn't roam like RSD does. So be careful.

Hi Beth, Wow what a road your travelling. May I ask what kind of vaccine you had. I am thinking back and I remember I was going through hepatitis vaccinations when this stared. I don't remember the time frame, but I need 3 shots over a period of time and remember my arm hurting bad for at least a week. Like some one punched me really hard. I phoned the pharmacist and he told me to ice it. Just thinking out loud.