[TraceyW]

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.

[astern]

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'.

[TraceyW]

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

[Jomar]

IMO 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

[thursday]

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.

[TraceyW]

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.

Originally Posted by Jo55

IMO 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

[gibbrn]

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

[TraceyW]

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.

Originally Posted by gibbrn

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

[dealingwithtos]

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.

[TraceyW]

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.

Originally Posted by dealingwithtos

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.