[MarketRisk]

think this is it. been >3yrs now since cycle flipped sideways. shoulder pushed up and spine over shoulder (helmet bouncing off road). funny bone hit for months. nervey up right cervical, down right thoracic, and out towards right shoulder. wasted. winging scapula. clunky neck. just such rubbish pain.

why is computing causing such problems?
why does using the arms?

i can't live like this. shoulder surgeon sending me for possible modified eden-lange or serratus anterior surgery. but i was just examined by a medic about 2 yrs ago and i had a MASSIVE reaction - whole nerves flared up (he was trying to figure out why the right side was more forward and down than the right). what to do? any recommendations? i am so scared. i was lying on the floor in agony for months and only recovered to how was before (rubbish if you try and do anything) over a year later.

what is wrong with me?! had axonopathic proximal plexus and spinal accessory nerve lesions finally in sept 09. had all of right cervical and thoracic spine denervated before then, because pain guy thought it was spinal. right, best go, arms hurting like ... anyone else have very tight thoracic spine and crushing pain around the chest (along with the rats eating your shoulders, heavy electric arms and cold hands, stabbing neck, aaargh!)

why me? my daughter is 7 (she was 3 when this happened) and all i ever wanted was to be a good mum and a hard worker. sorry, feeling down. pain consultant saying my doing computing for 22.5 hours a week is not 'an insurmountable' for me. wish he knew what this felt like when i type. can i show him anything? he probably just thinks i'm workshy (had 1, 2.5, 1, 2 days off sick in 4 years prior to accident, bar 4 days for missed miscarriage, have 1st from cambridge and a ph.d. and post-doc research), but my pain just becomes unbearable doing this or anything else like sewing, or hoovering, or keeping my neck and upper back rigid. i was/am a maths modeller / software engineer.

does this make sense to anyone? i feel so alone.

after doing an hour computing through the day yesterday i ended up where i spent most of 2007 (when i was forcing myself back into work). on the floor, on my front, with my hands and arms under my shoulders and thorax, with hot wheat pillows on my back and neck, a fentanyl lozenge in my mouth, and sobs of pain and frustration. i couldn't even collect my daughter from school 10 minutes away. her father had to, and he'd been up for work at 5am.

i feel so useless. unhappy smiley face.

[Jomar]

For myself I didn't recover very much until I was off work , had some expert/advanced PT, found an expert/skilled chiropractor {also did upper cervical adjust as well as PT type modalities} and did a lot of self care and learning about my body and what it needs to best heal from this stuff.
And it still took about 3 yrs for me to get to a point of being able to almost feel normal. I'm still in the mild and sometimes moderate chronic category of RSI/TOS.
At my worst my pain level was about 6/7 but I was lucky that didn't last very long at all.

I learned about things like -
trigger points
muscle spasms
hydration & nutrition
hyper mobility - more susceptible to repetitive type injuries and misalignments
diaphragm breathing*

posture & posture fixes
{shoulders rolled forward, head forward hunched shoulders, etc}

- lay on back knees raised takes pressure off low back, feet can still be on floor, pillow for neck if needed, do the *breathing* and work towards relaxation , arms out at sides {comfortable position} 15 minutes as many=y x a day as you can do it - find the comfort place for you and then after you can do it with no increases in pain or sx- then place arms out a bit more and work forward to the next goal.
If you can lay on floor with arm out and be OK then the next step is a rolled up towel or a foam roll like PT places have.

some posture & evaluation vids-
http://video.google.com/videosearch?...3&oq=posture+#

here's more videos -
http://neurotalk.psychcentral.com/sh...163#post615163

be sure to try the search tool for specific topics too, we might forget to mention something important.

forum search-
http://neurotalk.psychcentral.com/fo...to_forumsearch

[kellysf]

This all makes sense to me. My son was 4 when all my pain stuff started. I can relate to the feeling of loss about how this affects our relationships with our children.

If you haven't done so already, explain in detail to the pain consultant why working 22.5 hours is so difficult. I was working 24 hours/week as an attorney and I had to tell my doctor why it was so hard to keep working, especially with the prescription medication. Turns out, he thought he had already put me off work. So don't assume anything about what your doctor does or does not understand.

Lots of us here have been treated for all kinds of things that may or may not have been appropriate. I would urge you to listen to your natural skepticism about additional procedures.

Welcome.

Kelly

[(Broken Wings)]

Welcome to NT

So sorry for your condition. You've had some good advice to start with. There's so much info here, with helpful things to try, it's amazing.

You have a lot of problems. My 1st pain management doc said I would be like peeling an onion off in layers. He was correct in that respect. I guess some onions are bigger than others.

I've lived through 7 yrs of hell. accident in 10-2000. These last 3 have been with much improvement. Keeps getting better for me.

It may take some time to figure out what might relieve some of your symptoms. I do believe you can improve on some things/areas. We'll help you figure things out. Just ask. Let us know what you're having the most difficulties with.

I've found that keeping my upper body "fleece warm" with blankets, throws or warmer clothes helps my pain level. Heating pads are comforting but not good in the long run, especially when you need them like we do. Hands covered with arm socks or nosepicker gloves. (You can get those at the Harley shops.) Inhale water. breathing exercises, posture, Theracane, balls, LED and infrared light pads, all shapes of pillows (neck/bone shaped pillows are comfortable for neck). palms up, like on the anatomy charts will show the figure posed.

At my workstation, I've got articulating arm supports (took them off for a whle but have put them back in use-aggravating at times), oversized tennis ball, 1 of my Miracle Balls, a long dressing mirror at the side of my station so I can keep an eye on my posture. I call it the "Posture Police." Fleece blanket, arm socks if I need them. I used to use wrist splints with thumb spicas, right and left, Kinesio tape (helped me with ADLs and kitchen duties, keyboarding. So many things.

I found some injections helped and some didn't.

I understand being too sore to work on, but I let them anyway. Some of that helped and some of that didn't. I've been through a lot of different things. I'm much better these days and my pain levels would be from 1-4, maybe a 6 some evenings. Driving gets me, still.

I understand if you're just not able to do any, and I mean any kind of stretches or exercises, but have it as a goal in the near future. Squeezing toothpaste was painful, and that cap... ugh!!!!

I understand the dark side of pain. Been there. 24/7 @ pain levels of 7-10, with very few 7s. Don't even want to think about it, really.

For now, you just do what you have to do to get through it.

We are willing to share our experiences and help you figure things out. No question is too silly here.

We understand.

[MarketRisk]

thanks for your messages. so many threads, i don't know where to start. and when computing makes it worse, hard to do!

did wonder why, once flare-up flaring up, that symptoms become apparent on the left arm as well?

any drugs that help? anyone in the uk? apparently they don't do much with this in the uk. i contacted dellon in the states and he said to come over there for surgery (after i've seen carlstedt here in london). also saw that nath deals with neurolysis.

upper, upper trapezius very wasted as well, and don't see how that would be affected by neurolysis?

why do my arms feel so darned heavy? i'm not carrying anything!

best wishes to you all. sorry that you know what i'm going through (if you know what i mean) x

[(Broken Wings)]

Hi,

I understood my heavy arms to be a symptom of TOS.

http://www.fentek-ind.com/ergorest.htm

http://www.ergopages.com/ergorest.html

I also found stretches for my arms to help with the heaviness. I would roll a towel longways, cylinder shape, and place up and down my spinal column and I would extend arms out, like cross shape I guess and then slooooowly raise them, reaching for the ceiling, and brings palms together and then slooooooowly back down. They get easier. I would do these after a hot shower, seemed to work better for me.

My whole arms, every inch hurt. So yeah, unfortunately I know what that is. I don't have that heaviness now. I'm even driving without pillows for props.

I don't think I mentioned to you about the Kinesio tape. They helped with ADLs. You can order it online. You or a friend or health care professional can apply it. Best if used up to 3 days. remove and a day or two later reapply. I wore it for three weeks. People would ask "R U a burn victim?"

Also, on the taping, if you pull too tight, it can cause muscle spasm. Just to let you know from experience.

http://images.google.com/images?hl=e...inesio+&aqi=g3

http://images.google.com/images?hl=e...io+tapi&aqi=g2

You could try it. It helped me.

[TraceyW]

Originally Posted by MarketRisk

thanks for your messages. so many threads, i don't know where to start. and when computing makes it worse, hard to do!

did wonder why, once flare-up flaring up, that symptoms become apparent on the left arm as well?

any drugs that help? anyone in the uk? apparently they don't do much with this in the uk. i contacted dellon in the states and he said to come over there for surgery (after i've seen carlstedt here in london). also saw that nath deals with neurolysis.

upper, upper trapezius very wasted as well, and don't see how that would be affected by neurolysis?

why do my arms feel so darned heavy? i'm not carrying anything!

best wishes to you all. sorry that you know what i'm going through (if you know what i mean) x

Hi I saw professor carlstedt in london (was referred by dr chris jenner who works privately for the London Pain Consultants), didnt find him very knowledgeable about TOS and found him a little cold as a Dr but it is worth a go. Im now under the care of Dr Chris Jenner who as well as working privately, is also at St Mary's hospital in London, he sent me to see his physio Helen Dawson who is very, very good and although i havent been cured she really helped me understand the mechanisms behind what is causing my pain. Dr jenner has given me 2 lots of botox in my neck and this has helped with some of the pain, although the hand coldness and pain in little finger still continues so I am off to see another vascular dr week after next......

DO NOT give up - i have been to various dr's and most have no idea what to do with me.....a good pain cons can help, he has prescribed pregabalin (called lyrica in the states) and amitriptiline which helps for nightime pain......

[MarketRisk]

thanks for your message tracey,

i want to go down the neurolysis route, since whenever i try and do anything much with right arm, or even having head unsupported, causes nerve irritation symptoms to increase. have spent months on the floor following examination of the area. to me, the dellon pain book makes sense - i.e., that pain signals have to come from somewhere and that is always from nerves. if you can find the nerves then you can kill the blighters, or decompress them.

frustrating that nobody in the uk seems to go down this route unless it's to do with other nerve problems (e.g., nerve graft, and then they'll do a clean up of scar tissue that was there, rather than just clean up the scar tissue and see if that helps with debilitating pain symptoms). would that sensory experience was transferable to consultants (temporarily)!

does jenner not go down the neurolysis route either? i've had botox in traps, levator scapula, a couple of times, but just a bit of temporary relief from spasms. upper traps and serratus anterior wasted, so until that sorted muscle imbalance plus scalene tightness (which came first) will continue. and the blooming nerve irritation, heaviness, coldness, etc.... on use / examination.

how are you? do you live in london? i'm in cambridge.

really hoping for advice on who to see / consider in the us. i'm happy to use up life savings if it might help!

best wishes,
zoe

[TraceyW]

Originally Posted by MarketRisk

thanks for your message tracey,

i want to go down the neurolysis route, since whenever i try and do anything much with right arm, or even having head unsupported, causes nerve irritation symptoms to increase. have spent months on the floor following examination of the area. to me, the dellon pain book makes sense - i.e., that pain signals have to come from somewhere and that is always from nerves. if you can find the nerves then you can kill the blighters, or decompress them.

frustrating that nobody in the uk seems to go down this route unless it's to do with other nerve problems (e.g., nerve graft, and then they'll do a clean up of scar tissue that was there, rather than just clean up the scar tissue and see if that helps with debilitating pain symptoms). would that sensory experience was transferable to consultants (temporarily)!

does jenner not go down the neurolysis route either? i've had botox in traps, levator scapula, a couple of times, but just a bit of temporary relief from spasms. upper traps and serratus anterior wasted, so until that sorted muscle imbalance plus scalene tightness (which came first) will continue. and the blooming nerve irritation, heaviness, coldness, etc.... on use / examination.

how are you? do you live in london? i'm in cambridge.

really hoping for advice on who to see / consider in the us. i'm happy to use up life savings if it might help!

best wishes,
zoe

Hi zoe, I am in south london in croydon - travel up to the city for consultions and physio as no one nearby is knowledgable in conditions such as TOS.

Well I havent heard of neurolysis before - just googled it and get the basic idea that it is a procedure whereby the problematic nerve is killed off by chemicals. Not sure if this is ever used as a treatment for TOS as TOS is a condition where compression is caused at the point where the neurovascular bundle travels through the thoracic outlet (between collar bone and first rib). As a pose to the point where the nerve comes out of your spine - in that case i can see why that treatment could be useful. Having said that TOS can cause some nerve root irritation so perhaps this treatment could be good for that.....

Have any of the consultants you have seen mentioned thoracic outlet syndrome to you - or you to them?.....your symptoms do sound TOS in nature - heavy arms, coldness in hand, weak head - YES, ditto for me too! TOS is a very, very difficult condition for a consultant to diagnose as there is no one definite test to confirm it.

FOr me, this all started 5 years ago - after falling down some stairs, office job made it a hell of a lot worse.....in my case my TOS is on the milder side and has been reduced by about 50% just by leaving the office job - could not type as hand would feel disconnected from me - neck/head would feel so weak and heavy and would have bad pain in shoulder blade.

Tracey

[MarketRisk]

Hi Tracey,

Oh, rubbish that you had to leave your job. I'm finding that out now as well. Had hoped that I could go back to it, but using the computer is a sure way to make things worse. What do you do now? I find day-to-day living severely affected.

Not had TOS diagnosis. Mentioned it to shoulder surgeon and he said was dependent on what you did with your arms (well, urm, that's what I've been saying for 3 and a half years), old pain consultant said the area (brachial plexus) was 'irritable' in 2008 after his examination put me into hospital because of the flare-up, which GP and I thought was brachial neuritis (sounds like TOS is the same, but without the immuno-response cause). So uncanny when I came on here just how many symptoms fit - heavy arms, iron rod / stab at cervicothoracic junction, winging scapula, wasted trapezius, scalenes in spasm, raised rib, cold, blue hand, anterior chest pain (even admitted for a couple of heart attack type attacks in 2008!), searing face, ears, neck and upper back, feels like breathing fire, right hemisphere headaches, etc...). I thought I was the only one in the world with such a weird collection of symptoms, but jolly good (not for sufferers) that I'm not. And it spreading from right to left. Also, seem to get mild swelling when go into flare. Also, ants crawling nerve pain up back of neck and out across top of neck-shoulder then down back of shoulder blade. Also, icky nerve bundles at scalene, front of top of humerus, palm of hand, wrist, and base of thumb. And on, and on... Had felt so alone before found this site. Mind you, still do, on this side of the pond, bar you Tracey. Sounds like those in the States are actually listened to a little more. I've had denervations along all cervical and thoracic spine that I needn't have had. I do often feel that consultants don't listen to what I say, so I've tried writing it down and then they just ignore that as well. Anyway, enough ranting.

I think I meant on the neurolysis side the "Freeing of a nerve from inflammatory adhesions" rather than killing it. Not sure whether to go for this, which seems the most conservative of the treatments or with the scalene reduction and possible rib removal. Don't know how to find out the pros and cons for me and what I need, when I can't even get a diagnosis here!

You are so lucky with physio that's relevant. My physio is still sticking with the CRPS diagnosis, so it's trying to do repetitions that flare up the nerves. So she and pain consultant are like 'well, muscles flare up after they haven't been used', but I'm very sporty and know what that sort of muscle pain feels like, and this ain't it! So now I just don't do them if they flare it up. Find cold water helps (swimming pool) and clavicle support done up tight (raises shoulder and brings it back, but weakens good left side).

Tempted to see Christopher Jenner and your physio. What botox did he do? Did it help? And on the physio side? Rather disheartening re Carlstedt. What did he say about TOS? Did he offer any tests / physio / surgical options? (Doesn't sound like it.)

Please feel free to private message me - I don't think I can mail you yet, because not written enough messages. Or you can email me at zoestockwell then the hotmail bit (won't allow me to write it, 'coz I've only posted 5 messages). Just bought Dragon Naturally Speaking software - it makes sooooo many funny and infuriating mistakes.

Thinking what other career I could pursue - grumpy mum in pain seems to be top of the list at the moment. Seriously, can only think of dog walking (1/2hr or maybe 1hr a day max.) or dog breeding (cute Cavalier has been great through this, along with family). Something that requires minimal use of the arms and lying down and relaxing. Hmm, can't think of many jobs like that! Aaargh.

Wonder if just proper physio, directed at the actual problem, would help... Be nice to just be believed by a consultant / physio re the symptoms. That's where the EMG results were useful - suddenly you're not treated as such a looney. Appalling; my symptoms haven't changed, but the reaction to them has. No wonder chronic pain sufferers have psychological problems. Oh, just be cheery, and the pain gate theory means that you won't feel your pain so much. Oh, so it's my attitude that's causing me pain. I even had one CBT guy saying that my relationship problems were causing the 'pain in my neck'! Oh dear, think I've still got a lot of ranting to do. Hope you and the forum don't mind.

Best wishes,
Zoe