[TraceyW]

Hi everyone - im having some conflicting diagnosis from dr's over the last 3 years or so and the latest dr thinks i may have CRPS, not TOS. I have had a physio and pain cons tell me they feel i have TOS! A rheumy and a neuro guy not have a clue whats wrong and now a vascular surgeon confusing me with another syndrome!

My question for you guys is: do CRPS patients always have the burning hot sensations and the sensitivity to touch?

I have neither which is why im fairly confused with this latest 'shot in the dark' from this new dr.

A brief list of my symptoms are (all on the right side):

Coldness in hand - and on/off in shoulder blade and arm.
Little finger tremors and feels very alien to me - tip goes purple/tingles if too
much activity - swells a little, puffy looking.
shoulder blade pain
neck stiffness
numbness on front of wrist and forearm - also recently on side side of face, just next to my mouth.
neck feels weak - head feels heavy - arm feels weak and useless (on and off)
muscle wasteage in wrist, padded part of thumb and collar bone.
pain in collar bone and up into front of neck

also (may be unrelated):

general bit of fatigue and frontal headaches
when walking the skin on both hands often feels tight - little hot too
little hairloss and scalp dryness - could be stress related tho?!

Triggers: bascially any use of the arms - low or high......reading, typing, carrying, driving etc.

I took an awkward fall down some stairs 6 months before all this started and was working a heavy typing office job too - my posture wasnt great - the pain was awful until i left the office job - it has changed slightly over the years but still bothers and hinders me on a daily basis.

I would appreciate any responses fromanyone with CRPS (hot or cold?, i understand there are 2 types?) who recognises these symyoms as CRPS....

Wishing everyone a good day!

Tracey

[loretta]

Originally Posted by TraceyW

Hi everyone - im having some conflicting diagnosis from dr's over the last 3 years or so and the latest dr thinks i may have CRPS, not TOS. I have had a physio and pain cons tell me they feel i have TOS! A rheumy and a neuro guy not have a clue whats wrong and now a vascular surgeon confusing me with another syndrome!

My question for you guys is: do CRPS patients always have the burning hot sensations and the sensitivity to touch?

I have neither which is why im fairly confused with this latest 'shot in the dark' from this new dr.

A brief list of my symptoms are (all on the right side):

Coldness in hand - and on/off in shoulder blade and arm.
Little finger tremors and feels very alien to me - tip goes purple/tingles if too
much activity - swells a little, puffy looking.
shoulder blade pain
neck stiffness
numbness on front of wrist and forearm - also recently on side side of face, just next to my mouth.
neck feels weak - head feels heavy - arm feels weak and useless (on and off)
muscle wasteage in wrist, padded part of thumb and collar bone.
pain in collar bone and up into front of neck

also (may be unrelated):

general bit of fatigue and frontal headaches
when walking the skin on both hands often feels tight - little hot too
little hairloss and scalp dryness - could be stress related tho?!

Triggers: bascially any use of the arms - low or high......reading, typing, carrying, driving etc.

I took an awkward fall down some stairs 6 months before all this started and was working a heavy typing office job too - my posture wasnt great - the pain was awful until i left the office job - it has changed slightly over the years but still bothers and hinders me on a daily basis.

I would appreciate any responses fromanyone with CRPS (hot or cold?, i understand there are 2 types?) who recognises these symyoms as CRPS....

Wishing everyone a good day!

Tracey

Hi Tracey, Welcome to the group here. Most of us went thru several Drs. and misdiagnosis. You are very fortunate to be early in finding a diagnosis. Anything within 6 months to a year has a good prognosis for CRPS. Many on here have both TOS and RSD. I'm not very familiar with TOS, but there is a TOS group on here. I've had RSD for 12 years, but wasn't diagnosed for 4-5 years. Mine started the day after a left breast surgery for two benign tumors. I knew the next day something was very wrong. My entire left arm was at least doubled in size. They withdrew liquid 2 or 3 times with syringe. Then the shoulder completely froze up. Surgeon sent me to a Rehab. Dr. She said it was very bad and and send me to physical therapy, should say physical torture. Had about 100 treatments, strapped down, with pain meds in me. Also had massage therapy beforehand to soften up the tissue, I paid for that.
After about 50, they referred me to orthopedic surgeon. He wanted to operate and break it loose. I said no thank you. Finally got about 95 percent usage back. We moved from Oregon to Arizona. and shortly after the move got frozen shoulder in the right shoulder. The Oregon Phsio said it may transfer over to the other side. lI just thought all along, I got the problem, because my Dr. went on vacation the next day and no one sent home the pamphlet directing the stretching exercises to prevent frozen shoulder. So mine froze up big time. I was so mad. Well, we got settled, daughter finished college, got married, and 3 months after the wedding my husband and I took some good friends water skiing. I felt a strong pull in my left hand, swelling, pins and lots of pain. and then it became frozen, the fingers. Saw a rheumatologist and he said Rheumatoid Arthritis and Fybromyalgia. I didn't feel the RA was correct diagnosis as the tests didn't show a Rheumatoid factor. So i made an appointment with an Orthopedic Hand Surgeon and when he walked in the room he said RSD is one minute. My hand was motley colored, purple and reddish. Cold sometimes and clamy and hot and sweaty other times. I was always going between hot and cold. He started me on Physical therapy and ordered a tens unit. Oh, before that, went over to the hospital for nuclear med tests. Showed bone loss and rsd.Came back to AZ. and got a hand specialist with rsd and therapist next door. Also had a good neurologist familiar with rsd and ran more tests. started on some meds. I got partial use of fingers back. Kinda like a claw now and won't bend any more. I never had the sensitivity like not being able to wear clothes etc, but I did do a lot of therapy to desensitize. running my fingers thru, cotton balls, coffee grounds, rice, popcorn, just all kinds of different textures. My soft kitty is my favorite feeling. At least I can cut my own food now. It has been no song, decided not to have the nerve blocks. They can make it better if early, and worse under some circumstances. Maybe a few months later noticed right hand doing the same. more therapy and got it early so no frozen fingers. Went down to both feet and legs. haveburning red/purple burning feet and pale ice cold feet. I have the frontal headaches almost dailey and also across the back of head. heck pain. Skin red bumps all over body. in left hear and nose. left side of face numb over to half of the lips. burning behing the left eye. I also have trigeminal nerve disorder that affects half the fact. Swimming in 86 degree water is the best, and I do stretching. Miss the tennis and water and snow skiing. 4 years ago had a very bad seizure, blood pressure dropping to 40.icu for 4 days.I was always size 4-6 and now gained 50 lbs. the anti-seizure meds are the culprit. The meds changed my taste and now am a vegetarian. My husband is so supportative and daughter and son in law. Daughter is court reporter. I tell you, it's so important to get the right Dr. If there are support group meetings in your town, I personally would want to talk to some and find out who specializes in this area. You need the correct diagnosis. Sometimes you can call the Hospital Education Program, or Support Group Meetings and find out who is working with certain neurological
systems, Some Pharmacists and well informed. They know the better Drs.
For me, going to a Sports Injury Hand no time.
I also have the collar bone pain and lower back pain. Sleeping at night is IS NOT GOING SO GOOD. oH, dO YOU HAVE SLOWNESS OF SPEECH? LIKE GRASPING FOR THE RIGHT WORD Take care of yourself, your friends, Loretta

[dreambeliever128]

I have both TOS and RSD. I fell too many times to count while on meds with too many side effects.

It's very possible you have both TOS and RSD. A Vascular Dr. could most likely diagnose both. My first visit to a Surgeon in Denver diagnosed me with the TOS, CFS, and several other things and later I had surgery on my right side for TOS. I do believe I had RSD also and after surgery it just came out more. I didn't have a block the first time.

Some of your symptoms sound like RSD so they are most likely right on that but with the neck problems and some of the other problems as I said, you could have the TOS also. I was first diagnosed with the TOS by a Physical Therapist so don't rule them out as being wrong. A lot of Drs. can't diagnose it. I never had good luck with Neurologist knowing anything about it.

Good luck and I do hope you get the help you need soon. When I hear people like you tell what you are going through it brings back the memories of how bad off I was. I feel for you for sure.

Ada

[TraceyW]

Thanks for your kind responses, Loretta and ada!

Does CRPS/RSD always occur immediately after the injury?. As my symptoms started about 5-6 months after the fall down the stairs!. My hand doesn’t tighten up like a lot of people seem to describe…..the skin does become tight feeling when Im out on a long walk and sometimes it feels hard to hold my fingers out straight – but that feels more like slight muscle weakness to be, perhaps due to the muscle wasteage.

I fell down the stairs in mid 2004 and the symptoms started in late 04/early 05. First symptom was a stiffing of the thumb which was very painful to move and frequently ceased up whilst I was typing at work. This symptom passed after a few months and was replaced by a constant shoulder blade deep aching pain – pain down the back of my arm and into my hand. My hands would go red when I picked up a hot drink but never burned, this symptom has passed now though.

Over the last 4 years my symptoms have changed and shifted a bit into the coldness and strange ‘alien’ feeling in my little finger. This to me all fitted in with TOS when a physio mentioned it to me 8 months after the symptoms started.

I have been posting and reading on the TOS forum here since earlier this year and it has been a great help!

I sometimes have trouble remembering words when im speaking Loretta, but not sure if that’s just me being scatty!

[dealingwithtos]

Hi Tracey,

I just wanted to mention that when they diagnosed me with TOS, it was because I didn't have a pulse in my left side when my arm was raised. That was the major reason why I needed surgery. Did they check for a pulse? Also, I could control the blood flow in my arm. If I left it down, it would swell and get red. If I would lift it up, it would turn white.

I also had some of the symptoms that you say in my left side/shoulder and such. Has anyone said something about a pinched nerve??????

[TraceyW]

Well i had a physio move my arm and neck into a certain position and reproduced the symptoms in my shoulder blade and arm. Then a pain cons last year did adsons maneouver and my pulse weakened but not complete loss on the right side. This latest dr last week had me sit on a chair and he lifted my arm around a bit in diff directions and said my pulse was fine in both arms so im confused - someone over on the tos forum said that neurogenic symptoms can sometimes be semm like vascular.....so im just permanently confused really!

Mri showed no pinched nerves....but i do have tenderness on lower C vertebrae.
the pain cons also thought i may have nerve root irritation.....

Originally Posted by dealingwithtos

Hi Tracey,

I just wanted to mention that when they diagnosed me with TOS, it was because I didn't have a pulse in my left side when my arm was raised. That was the major reason why I needed surgery. Did they check for a pulse? Also, I could control the blood flow in my arm. If I left it down, it would swell and get red. If I would lift it up, it would turn white.

I also had some of the symptoms that you say in my left side/shoulder and such. Has anyone said something about a pinched nerve??????

[loretta]

Hi Tracey,
You have a lot of symptons I relate to.I don't know if all rsd comes immediately after an injury-some people never remember a particular incident and definetly most of us aren't diagnosed for a long long time. I was misdiagnosed and then changed Drs, actually flew black to where had lived before and went to sports injury orthopedic hand specialist. My hand has partial use. Had a neuclear med test. It showed bone loss and deformity. It still gets bright red touching hot or even cold water or a glass. It has a slight shinny gloss look to my hands and bottom of feet. They speech with grasping for words or looking for the right word or starting the sentence over goes with rsd. The limbic part of brain is affected. Recall and short term memory is affected. I have to write things down or I would never remember it. Has seriously affected our business, I miss appointments with people wanting a new coffee service. We have delivery vans deliver coffee and condiments and clean the commercial equipment we loan to them. I really miss the involvement I used to have. One of the drivers is driving me around tomorrow to some car dealerships and businesses. RSD is a autonomic disorder- and that affects circulation and blood pressure high and low. Heart can be involved and other organs. If you can take a couple days and looked under RSD introductions and experiences and read them- learn so much from others and then compare with you. Everyone is different, but there are certain commonalities we all have.Please let me know how everything goes. Loretta

[TraceyW]

thanks loretta......it seems both tos and crps (and im sure many other conditions!) are massively under diagnosed - its so frustrating!

im still waiting to speak to the dr who says i have crps - he was meant to call me last week but i havent yet heard. i want to know which of my symptoms he thinks are crps - what testing he wants to do next etc!.....im asuming there are more than just MRI's needed to diagnose this condition? - what is a neuclear med test?.

i can see some similarites with peoples rsd stories - but i can see more with tos....i dont have any burning pain or any real skin sensitivity. only problems i have that arent explaned by tos and possibly with crps is the hair loss on scalp and dry patches on scalp - but this could be a number of other things causing it too!

oh, its all so confusing!

Originally Posted by loretta jewell

Hi Tracey,
You have a lot of symptons I relate to.I don't know if all rsd comes immediately after an injury-some people never remember a particular incident and definetly most of us aren't diagnosed for a long long time. I was misdiagnosed and then changed Drs, actually flew black to where had lived before and went to sports injury orthopedic hand specialist. My hand has partial use. Had a neuclear med test. It showed bone loss and deformity. It still gets bright red touching hot or even cold water or a glass. It has a slight shinny gloss look to my hands and bottom of feet. They speech with grasping for words or looking for the right word or starting the sentence over goes with rsd. The limbic part of brain is affected. Recall and short term memory is affected. I have to write things down or I would never remember it. Has seriously affected our business, I miss appointments with people wanting a new coffee service. We have delivery vans deliver coffee and condiments and clean the commercial equipment we loan to them. I really miss the involvement I used to have. One of the drivers is driving me around tomorrow to some car dealerships and businesses. RSD is a autonomic disorder- and that affects circulation and blood pressure high and low. Heart can be involved and other organs. If you can take a couple days and looked under RSD introductions and experiences and read them- learn so much from others and then compare with you. Everyone is different, but there are certain commonalities we all have.Please let me know how everything goes. Loretta

[Jennelle]

Hi there!!!
My name is Jennelle and I am a person with RSD and also am a Registered Nurse. I can tell you what the best DR. I have found told me so far about RSD/CRPS....pretty much every question anyone asked about the condition can be true: it can come and go, it can be hypersensitive some days and not others, it can spread to other limbs-even your face. It took the drs. awhile to finally say I had RSD, I think everyone was thinking it but didn't want to be the one to give me the dreaded diagnosis.... they finally settled on it when I got my fist nerve block and the temperature in my hand/arm went back to normal along with the color. Maybe you could try a block and see what your results are.... if it is RSD:reflex sympathetic dystrophy.... then your sympathetic nerve is the culprit and will probably respond in some way to a nerve block... I hope you get some answers... by the way what is TOS? I have heard the term twice and don't yet know what it stands for. I didn't know what RSD was until I got it either though...even being a nurse (I work in pediatrics) and I hadn't seen it in practice. Hope you find some answers! Forgot to mention some other ways to know the difference: vascular study (I just had one) where they use ultrasound to see what your vessels are doing in different positions, and a bone scan may show changes in bone and vessels I had a 3 phase one done (although mine showed PROBABLE RSD, that just meant that it showed some signs but not a definitavley because in 1/3rd of people it won't show for sure. Unfortunatley, RSD/CRPS is hard to diagnose and no one really wants to say for sure that is what you have because there is no real cure.
Jennelle

[Curious]

Thoracic Outlet Syndrome

Here is a link to our TOS forum. http://neurotalk.psychcentral.com/forum24.html

You can find a lot of very good and helpful info in the stickies there.