Tos?.....crps>.....im so confused!!!!
 

Hi everyone,

I saw my new dr today (meant to be only tos specialist in UK). It was a long trip and im really not up to the laptop but i need to as im so confused!

Im 99% i have tos - a pains cons has told me this and a physio.....my symptoms match down to a t......however this new dr thinks i may have CRPS and not TOS (although he may want to do some exploratory surgery to look for any fibrous bands....).

I have looked up CRPS and whilst i have some of the symptoms - i dont have any burning pain, which i understand is a main symptom of CRPS....I get a very cold right hand, but its not burning - more like someone is running ice cold water into my veins!

I have a lot of shoulder blade pain/discomfort. However, he also said that TOS sufferes generally dont have pain in their shoulder blade (from what i understand a lot of you guys do?!!).

My little finger is worst affected on my hand (it often turns a purpley colour and tremors/swells/aches a lot).

I am very confused now and feel like i keep going round in circles......im waiting for a letter from the new dr as he was called away to surgery after i came back from x-ray so we didnt really decide on what to do next - so perhaps i should just see where this goes. I just want to be diagnosed!!! Im not asking a lot.

my last consult with a pain doc, she added CRPS to my diagnosis. I think chronic regional pain syndrome is 'fancy talk' for 'hurts all over in this area'.

Thanks astern, im so fed up with all the BS im being given by dr's - shoulder blade pain is a symptom of TOS - if we look through our top 5 tos symptoms thread we had on here a while ago, every other person mentions shoulder blade pain.....i suppose it poss that pec minor syndrome could be causing the shoulder blade pain but it certainly isnt crps as its not anything like a burning pain - its a deep aching/stabbing pain.

Why should i have to point this out to the professional!, how can i trust someone to do 'explorative surgery' when they dont even seem to realise the full symtoms of tos and the other commonly related conditions!!!.

Im angry and upset all rolled into one.

Im going to rest now before i spontaniously combust

IMO :o the shoulder blade pain is a myofascial occurrence or reaction due to the rolled, hunched or shoulder forward posture.

For me I get the pain under the shoulder blade when I am not being mindful of postures. It is the rhomboids that can get over stretched very easily.
There's another post of mine from last winter?? where I explain the cause /effect/ fix of this for me.
a forum search of "rhomboids" should bring it up for you.

[he may want to do some exploratory surgery to look for any fibrous bands]
Umm if you do have Crps - unnecessary surgeries are not advised.

There is a version called cold RSD, but you might need to search the RSD forum for more info about it or post a question asking about it there.

I'm sorry - I read so many other forums here that i can't recall what tests or PT you have had so far??
If you can make a brief list of what you have done already?


If not expert PT, posture work or bodywork - I really suggest that be tried - first maybe at a few different places or diff people.
pain reduction first priority at those places - therapeutic massage, Trigger point work, ultrasound, LLLT , E stim... etc
after pain is reduced then some gentle stretches and maybe some isometric muscle work
at any time if sx increase or new ones start up - step back to a safe point

myofascial pain info sites
http://www.google.com/search?hl=en&c...al&btnG=Search

My thoughts are with you. This sort of confusion IS maddening for sure!! Decompress and begin sorting it out when you have calmed down a bit. :hug:

Thanks Jo, The shoulder blade pain has always been a big problem for me - its not really over the shoulder blade - more inside/underneath as you describe. I get it just sitting in a chair with a low back - then my little finger/arm start to feel funny. The muscles in my shoulder blade are very knotty and just feel uncomfortable most of the time.

I have had some PT (2 diff therapists) which finished about 2.5 years ago - it was a physio that first mentioned TOS to me when she managed to trigger my symptoms by moving my arm. I have also had acupuncture which helped shift some of the solid lumpy muscles.

SInce then - MRI & MRA, all clear, 2 Nerve studies - all clear (the first mentioned some poss interference but notthing specific) He did another xray yesterday but i dont know the results on thatyet. Pain cons did adsons and my pulse weakened - he also thought its likely tos.

I have left my office job 2 years ago and the pain isnt as intense but still affects me on a daily basis.

4 yrs later and feel like im at the end of the road - if he rules out tos then i just dont know where to go anymore as im certain its what i have! I wil take a look at the things u suggest i research later today - im just feeling really drained after the long journey - over 4 hours each way and i feel like im not really any furtther on - perhaps i just need to be a little more patient.

Oh dear
 

Hi Tracey,

I am so sorry to hear of your experience being a frustrating one!! I feel for you. I had a doc try to tell me I had crps but i made him change his mind when I described my symptoms to him a little biit better.

The shoulder blade pain is there for me too. My massage helps it, but it really does not ever go away unless I take a huge load of drugs....percocet and diazepam. It is frustrating not to have a diagnosis or to have many diagnoses.

So this doc wants to remove fibrous bands eh.......well this sounds similar to tos surgery. But remember he is a surgeon and that is how he makes his money. If he had spent more time with you I am sure it would have helped you both to make a more accurate diagnosis. I hope you are able to speak to him again perhaps on the phone......you should at least know your x ray results....do you have cervical ribs??? I forget Tracey sorry. I do so I understand it a lot.

You will need to think long and hard about what has been said. If you truly do have crps and you have surgery it could make it much worse. There are members here who have been through this and can explain it to you if they show up or are able to msg you.
http://www.rsds.org/2/what_is_rsd_crps/index.html
that is a good site to explain to you what crps is......look carefully make notes if you can to compare what you do and don't have like a pro/con list....lol see if there are any similaraties in the sides of the page.

I think the biggest thing for crps is to know that a light touch is hellish to you. Also the sweating thing as well.....


http://www.rsdcanada.org/parc/english/index.html
this is a Canadian site with good info.
http://www.stoppain.org/multimedia/crps_script.html
great site is a transcript of the flash media on the following site.....try the below one first and use the flash media box in the top left side
CRPS Flash Animation
http://www.stoppain.org/pain_medicin...pain/crps.asp#


hope some of this helps and does not overwhelm...feel free to email or PM me!

gibbrn@hotmail.com

love and hugs,
Victoria:hug:

Thanks vic, have sent a rather long email to you!. Im prob not gonna be back online until tomorrow as im just so uncomfortable.

I think in my heart i know i have tos so it almost doesnt matter to me what any dr says anymore. A lot of us have shoulder blade pain - so for him to say its not a symptom of tos is ridiculous. Massage helps for me too - for about all of a day!, hot showers/heat pad are a life saver tho.

i think i need to describe my symtoms again as think i was very flustered after the long journey and rushing to the hospital from the train stn.

Hi Tracey,

Victoria wrote a very good e-mail regarding TOS vs. RSD.

I was diagnosed with TOS, had the rib resection surgery then developed RSD after the surgery.

Please, if there's any thought that you may have RSD, any surgery can make it much much worse. A pain specialist may also be some help to you to see if you do have RSD. It may be worth an appt to make sure.

With regard to TOS, I didn't have shoulder blade pain. I pretty much had all of my symptoms in my arm.

But, also, please remember that everyone is different.

Good Luck to you.

Thanks - vic is so helpful, as are lots of the guys on here its a stressful time and the support is so appreciated!

Exactcly - eveyone is different, re the shoulder blade pain - where can i find a dr who appreciates that! Looks like i may have to save up for a trip to the USA to see a someone tried and tested as there isnt anyone over here in the UK!

With RDS, do people always have the burning pain & extreme sensitivity? I dont have this so not sure why this dr thinks i may have it.

Tracey W
 

Yes, Victoria is right on.

You CAN have both TOS & CRPS.
CRPS is a condition caused by TOS due to the nervous system being comprised.
You can even get CRPS from a fracture or injury.
If you google CRPS, or look under the American Arthritis Foundation you may or may not have any or just couple of the symptoms.

CRPS is used by the insurance company's to cover the following all rolled into one: Chronic pain, fibromayalgia, RSD, etc...

TOS symptoms are totally different: the myofacial pain, neck pain, scalene pain, brachial plexis & subscpularis pain, arm weakness & pain when lifting above your waist or shoulders, hand & finger. In my case it goes down to numbness in my toes with stiffness in my right leg.

Forgot
 

TraceyW,
Yes, do your home work, research & don't rush into surgery. Get second & 3rd opinions. CRPS can dramatically increase surgery after surgery. As in my case. CRPS is a progressive condition & needs special attention. Exercise everyday & take your meds. Use calming tapes, & whatever makes your mind & nerves peaceful. Laying around will just create more poopy symptoms.

hypnosis
 

Hi Tracey,

If you are looking for relaxation I have these amazing mp3's of hypnosis. some for pain some for headaches some to stop being irritable, some to take you away to a forest or the ocean or a spring meadow.....they are amazing.
I can send one your way no probs at all. Let me know....email me or pm or put it here. but email will get to me faster than saying I look here all the time.

take care and I think you just need to send me your addy and I'll send you one no questions if ands or buts!!!:Soapbox: let me know and you know not to put your address here of course......email or pm it to me

love and hugs,
Victoria

right im finnally getting my head around this whole CRPS thing - have googled it etc.....

i have been mentally disecting my symtoms - thinking about them in more detail and making notes about them (sounds a bit odd but i need to get it outta my head and onto paper to make sense of it as it all seems to blend into one otherwise!)

apart from the shoulder blade pain, pain in arm, coldness in hand, shaky little finger, general weakness in head, neck & arm, numbness on front of wrist, muscle wasteage in wrist, thumb and collarbone etc - i also have a few other unusual symtoms.....

when im out walking (for exercise) i often get a tight skin feeling in both hands (my 'tos' symptoms are all in the right). both hands feel stiff and a bit hot (but not burning)

my hair did start thinning about 6 or so months ago - i also have dry scalp probs which i never used to have (could be caused by stress tho)



Im going to try and post something on the RSD forum to get some input from them too

Thanks to all for your kind support!!

I don't know if you ever saw my posts about how an advanced PT guy got my top ribs to drop down? {now chiro adjusts them if needed}

This was after the chiro was able to get rid of the severe spasms in my neck, upper back and chest muscles. {that took about 2 -3 months of 2x a week appts}
I was doing pretty much Ok in general, but anytime I would do the least little bit arm/hand activity - my arms, upper back and neck would all tighten up very easily....

here's info from one of my old posts=

[ the SCM and scalene muscle spasms pulled the top rib and collar bones up - felt horrible and made my symptoms so much worse with any use of my arms.

After my chiro relieved the spasms -
I had an independent evaluation by an advanced PT {hoping for better proof to use on work comp appeal} but it turned out he was able to drop my top ribs- they had gotten stuck & raised up from those spasms.
In a one time session and it made a world of difference for me.
- it's called rib mobilization, ask your PT or Dr about it.

I don't know if anyone has tried something like that for you in any PT or anything- rib mob is also used in Peter Edgelows therapy techniques. ]

thanks jo - no one has tried rib mob with me - the physio i was seeing last did stretch my scalenes which felt great afterwards.....

does rib mob ever make things worse though?

Well I suppose for some it may - if the muscles/nerves have been locked up or irritated for a long time already. or if someone is in active spasms I don't know how it would work.

In my case it was a simple thing, no pain at all.
I think i was out of the active spasms by then due the chiro's treatments {found one that uses multiple therapies for pain relief as well as adjustments}.
Because I am somewhat hyper mobile the ribs & clavicle had gotten raised during the spasms and were stuck in that position.

short description-
I was seated on the bench/table PT stood behind me.
PT placed his hands on my shoulder close to the neck and pressed/pulled downwards- not forcefully at all- just a steady moderate pressure.
20-30 sec he slowly released and compared w/other side, it had dropped 1/2 inch, so he did same on other side and it worked too.

This PT was the one that recommended to lay on the foam roll often as a way to drop and release shoulders & pec minor.
he said everyone should do this to off set the forward shoulder postures.
I don't know if this would apply for c rib issues - would be a good thing to ask about for your own case.

I was so amazed- while driving home I had no arm fatigue or hand pain and when driving before I had to constantly change my hands /arms due to discomfort & fatigue.

That was in 05 and since then I have really had a lot of recovery, I still go reg to chiro, was lucky to find a very good one, and he does a small rib adjustment when I need it.

Hi, Tracey! I'm a little late with this, but I'll just tell you my experience...I was diagnosed with CRPS II after my arm started getting warm, red, and sweaty...while I was at the doc's one time I was trying to fill out a form for them and my hand dripped all over their paper! However, I have not had all the intense pain and allodynia (hypersensitivity to touch) that many have...my pain is more TOS-related. I do have some slight allodynia when things are really flared up.

So...in doing some research on CRPS I found info about what is thought to be some sub-types, one of which is predominantly sudomotor dysfunction/temperature changes. I wish I could find that article again, because it's the only one I've found with these distinctions. If I do find it, I'll get it to you. However, here is a link to the RSDSA web site article archives, and there is a LOT of reading here: http://www.rsds.org/2/library/articl...ive/index.html

I do sometimes get that "cold" feeling in my hand, usually accompanied with numbness, and usually as a result of doing too much with my arm...however, for the CRPS side, my most noticeable symptom is the heat in my arm. I cannot stand to be in a hot room or in the sun, as it becomes hot enough to be uncomfortable...but still is not the burning pain that many have. I am taking 300mg Lyrica daily, and if I miss a dose then I start feeling the heat...in fact, it's like an alarm clock to remind me that I missed a dose.

Hope you're getting some answers...and I agree with the others...don't let them start cutting unless there's a really good reason. Neither TOS nor CRPS are easily diagnosed with tests, as you well know; but it sounds like you've gotten some good treatment and advice in the past based on a TOS diagnosis, so if that works I wouldn't get too worried about the other doc's ideas. Take care of yourself...:hug:

Edited to add: I do get the shoulder blade pain, too, btw...feels like a knife stuck under my shoulder blade. Sometimes massage helps, sometimes doesn't...

are these articles familiar???
 

Hi Donna7,

are any of these articles the one????
I have access to get them so if one seems familiar let me know....or I can try to look it up in a different way.


love and hugs,
Victoria:hug:



http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum


http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum


http://www.ncbi.nlm.nih.gov/pubmed/8...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

Hi, Victoria! Yes, it was the Bruehl study that I had read (the first link you provided). I found this pdf article about it: http://anesthesia.stanford.edu/pain/...20syndrome.pdf

I found the second abstract interesting, too...stating that skin temperature changes are a distinct and reliable method of establishing CRPS as a diagnosis. I had hoped my PM doc was wrong, and it wasn't CRPS...but my internal med doc told me the skin temp problems were indicitive of CRPS, so this study confirms his opinion. I think another interesting aspect of this, though, is the fact that Bruehl's study points to three subgroups, rather than the three stages, as was previously thought...in other words, the vasomotor/sudomotor predominant "stage" won't necessarily progress to the hyperalgesia/allodynia stage, but may actually be a subtype instead of a stage.

Thanks so much for looking these up for me...I hope Bruehl, et al, are right! I've been at this point for two years, without movement into the next "stage", so I may be a case in point that it's possible to have primarily vasomotor/sudomotor predominant CRPS. For now the Lyrica is keeping it manageable...

Tracey, hope this discussion has been helpful to you...I know in the "stage" theory, the warm/red stage comes before the cool/blue stage, so that may explain why your arm is cold and mine is not. However, even right now, I am sitting in a cool room and my left hand and arm are much cooler than my right...so maybe mine is more a reaction to external influences. I know the heat is worst when exposed to sun or a hot environment, or when I am wearing a winter coat. That seems consistent with this statement from the second abstract above: (although I may be misreading based only on the abstract and not the full article)

I wonder if this applies in CRPS II, as well...hmmm...

hey donna, thanks for your insights!. i have had fairly intense headaches the last few days and some visual disturbances so im finding it hard to focus on the computer screen at the moment.

Right so i get the idea about sub types of crps - but im getting confused with all the terminology - sodomotor dysfunction, vasomotor etc and dont seem to be able to find much on google to explain this - i will take a look through all those links when im feeling more up to it. So i dont have any burning pain -or extreme sensitivity - except for a feeling like there is something on my wrist, but i thought that was TOS symptom.....or it could be skin sensitivity in me!

Im also not sure which stage i would fit into either.....i havent always had the extreme coldness - the first year my hands would go red and hot - then i moved on to coldness......i get confused as thought that could be part and parcel of TOS.

Thanks for your PM too - i have been away from office work for 2 years now as there is no way i can sit at a computer and desk for more than 10 minutes - i have to sit padded up to the neck with cushions to use the laptop!

What tests did they do to diagnose CRPS in u?

take care
tracey

Hi Tracey...I hope you are feeling better with the headaches! Must be miserable! :hug:

Sudomotor is the sweating response, usually grouped together with edema (swelling)...vasomotor is the response that causes temperature/color changes. Here's an interesting quote from the article that I linked:

I wonder how this relates to the "stages" theory, since the red/warm usually precedes the cool/blue stage. If it's truly a subtype, and I am in Group 1, and the other studies show warmth is more common in short term CRPS, I wonder how much longer it will last. It's been two years...certainly not what I would consider short term, and not looking like it's going to go away anytime soon, either. :rolleyes:

To answer your other question, Tracey, I haven't had any specific tests for CRPS, just the doc's observations and my own report of symptoms to him. I've had multitudes of tests for TOS, though...and my doc was suspecting CRPS before I started noticing the temperature changes.

Take care of yourself, Tracey...

Hi,
I thought you may be interested in reading this article/paper by Dr. Hong

http://www.pubmedcentral.nih.gov/pic...2&blobtype=pdf

thanks for that - interesting reading - the guy in the case study had a similar story to mine (except i have no allodinia - sensitivity to touch?)....so perhaps its possible for people to have crps without sensitivy and burning pain.