[sbvcrn]

Hello
I am wondering could I possibly have RSD/CRPS. I think the only symptom that possibly coincides is burning cold areas on both upper arms, right worse than left, and left hip/thigh area. I also have burning feet, legs, hands and arms. Feels like hot wind stinging these areas. I see no change in color and no edema. I cannot relate to any virus or injury except possibly a left torn rotator cuff about two years ago. I did not have surgery for this. The shoulder froze then slowly thrawed to about 90%. If I watch what I do it is totally functional. The burning, etc. began about 18 months ago or about six months after the torn rotator cuff (which was definitely diagnosed as a full thickness tear per MRI). I have been totally tested for peripheral neuropathy because that it what it appeared to be (cbc, lytes, thyroid, B12, heavy metal, sed rate, crp, auto immune tests, emg, ncv and even skin biopsy). All of these have been negative. There is no particular stress in my life except for this as I am very uncomfortable and find I cannot stand many fabrics on my skin or have to turn them inside out as I find the outside often is smoother than the inside). Some on the PN forum have mentioned crps but upon much investigation I cannot really find any specifics that sound like me other than the burning/cold/temperature/fabric specifics. I feel the neurologists I have seen have "dismissed" me...What next to do as I feel things are progressing. I almost wish for something "visual", then maybe I would be taken seriously. Thanks for these forums and the ability to "vent"!

[tovaxin_lab_rat]

Sounds sort of like my situation but without the rotator cuff damage. I saw a physiatrist. You might want to see one. Pain management doc. He is the one who dx'd me with CRPS this past week.

The following information was given to me from Medline:

Complex Regional Pain Syndrome

Also called: Causalgia, CRPS, Reflex sympathetic dystrophy


Complex regional pain syndrome (CRPS) is an uncommon nerve disorder. It causes intense pain, usually in the arms, hands, legs or feet. It happens after an injury, either to a nerve or to tissue in the affected area. Rest and time may only make it worse. Doctors are not sure what causes it.

Symptoms in the affected area are

Dramatic changes in temperature and color
Intense burning pain
Extreme skin sensitivity

The cause of CRPS is unknown, and there is no cure. It can get worse over time, and may spread to other parts of the body. Occasionally it goes away, either temporarily or for good. Treatment focuses on relieving the pain, and can include medicines, physical therapy and nerve blocks.

From the National Institute of Neurological Disorders and Stroke

I hope this helps you. Good luck.

[MominPainRSD]

Originally Posted by sbvcrn

Hello
I am wondering could I possibly have RSD/CRPS. I think the only symptom that possibly coincides is burning cold areas on both upper arms, right worse than left, and left hip/thigh area. I also have burning feet, legs, hands and arms. Feels like hot wind stinging these areas. I see no change in color and no edema. I cannot relate to any virus or injury except possibly a left torn rotator cuff about two years ago. I did not have surgery for this. The shoulder froze then slowly thrawed to about 90%. If I watch what I do it is totally functional. The burning, etc. began about 18 months ago or about six months after the torn rotator cuff (which was definitely diagnosed as a full thickness tear per MRI). I have been totally tested for peripheral neuropathy because that it what it appeared to be (cbc, lytes, thyroid, B12, heavy metal, sed rate, crp, auto immune tests, emg, ncv and even skin biopsy). All of these have been negative. There is no particular stress in my life except for this as I am very uncomfortable and find I cannot stand many fabrics on my skin or have to turn them inside out as I find the outside often is smoother than the inside). Some on the PN forum have mentioned crps but upon much investigation I cannot really find any specifics that sound like me other than the burning/cold/temperature/fabric specifics. I feel the neurologists I have seen have "dismissed" me...What next to do as I feel things are progressing. I almost wish for something "visual", then maybe I would be taken seriously. Thanks for these forums and the ability to "vent"!

Hi sbv,
I am so sorry for the pain you've been experiencing. Many of your symptoms (burning, allodynia, which is sensitivity to normally non painful stimuli) do sound similar to CRPS. I think in order for the official diagnosis, you must meet several criterion:
http://www.wheelessonline.com/ortho/..._pain_syndrome

I found this link interesting and may discuss in more detail your specific issue if you look towards the bottom. Do you have any history of excessive edema in the area?? You mentioned no significant color changes.....those can include mottling of the skin (a marbled look), turning blue in areas or red)......it may be possible to not have these changes anymore if you've had it for a while (or it can become more or less obvious with time).

I am glad that you've found this forum. You can ALWAYS vent here or ask any question you may have. I hope for your sake that you do not have CRPS, but you have a good group of people here that will help you out however possible if you do.

It may be worth your while to see a new neurologist for a second opinion. It sounds like you've had every test in the book (most of which DO show "normal" results in cases of CRPS). Just know that WE know and understand the pain you are experiencing and we believe you. Best wishes to you and please keep us posted on how you're doing!!

[ali12]

Hello and Welcome to the RSD Section of the forum - you will meet many great, kind and caring people here who I am sure will be more than happy to help you in anyway they possibly can!!

I am so sorry to hear about everything that you have been through and are continuing to go through and I really hope you get some much-needed help and answers real soon!

Some of the symptoms that you mentioned sound like RSD such as the burning pain (that is a classic sign of RSD and is what most people experience), the hypersenstivity and the temperature changes (cold limbs etc).

The main symptoms of RSD are, Burning Pain, Muscle Spasms, Colour and Temperature changes (the affected limb may be hotter or colder than the other "Normal" limb), hair and nail changes (nails may grow longer, brake more easily etc), swelling, Osteoperosis (this doesn't happen for everyone and usually comes on a few months/years after you develop RSD), fatigue and concentration problems, short term memory loss etc etc. You DON'T have to have all of the symptoms however my Pain Management Doctor told me that you have to have at least 4 I think it was to get diagnosed.

I have RSD in my left leg and right arm, I developed it when I was 12 years old and am now 14. When I was diagnosed, my Neurologist said that I had the "classic" symptoms of RSD and that I was the only case of RSD they had seen that had most, if not all of the symptoms. It was REALLY scary being told that but I guess I was kinda "lucky" in a way as the Doctors believed me, once I found one that actually cared about me and my well-being.

Have you seen a Pain Management Doctor?? They are usually the Doctors that most people with RSD go and see to get diagnosed and they can be really helpful in prescribing medications and different therapies to try and help relieve some of your symptoms and ultimately, put your RSD into remission!

If I could suggest one thing to you, it would be to keep moving your affected limbs!! I KNOW that it is really painful to do so but it is probably the one thing that will help you in the long run!! Do you have any Physical Therapy at the moment? If not, that might be something worth looking into as PT's can be really good at helping to regain normal function. I see my PT's once a week usually and have exercises that I do at home on a daily basis and they are really helpful ... the PT hasn't helped with my pain BUT it has helped me regain some of my function and I can now walk short distances unaided where before hand, I was wheelchair bound!!

Have you tried anything like Epsom salt baths? A lot of people say that that can be helpful and can help relieve some of your pain if you can cope with the water on your limbs. Also, please keep touching the affected limbs as that will, hopefully, get rid of any hypersenstivity that you may have.

You don't have to have an injury to develop RSD. For some people, it can come on without any known cause. For me, my RSD was triggered from an ankle sprain however I have some friends on this forum and others that don't have any reason as to why they developed RSD that they know of! Everyone is different and no two people are the same unfortunately which makes it really hard for you to get any help!

If you need anything, please don't hesitate to ask me!! I am more than happy to help you if I can and I DO understand what you are going through!! I really hope you get some much-needed help and answers real soon and I am keeping you in my thoughts and prayers!! Please keep us updated when you can and I would highly recommend going to see a Pain Management Doctor if you haven't already!!

Take care of yourself and I am sending you many pain-free hugs!

[Imahotep]

I don't really have any outward signs either. It took years to get diagnosed and I think this was a large part of the reason. Everyone told me to go to one of the big hospitals and, apparently, I should have.

[angelrsd]

sbv
welcome to this forum im sorry to hear that you are having problems i hope that it isnt RSD . Please ask any questions. i am like you the main problems were color pain loss of ROM i also tore rotoar cuff no surgery. i have had rsd 11 yrs now and it is full body and internal. have you had bone scan three phase is the best. or thermography i had this done to dx finally my RSD

hope this finds you well

-carrie

[daniella]

Hi I am sorry about you rain as well. I don't have the appearance issues of rsd but I do have rsd and was dx with this as well as PN from many doctors. The first doctor who dx rsd was my neuro but then I also was dx by pain management doc who deal with rsd. I also didn't have an injury though was active in exercise before this but went to the orthopedic right away when the pain started with no fracture or break. I'm not sure where you live but I would try to find a PM doc who deals with rsd to get going on treatment asap especially since you have had extensive testing. Feel better

[sbvcrn]

Originally Posted by daniella

Hi I am sorry about you rain as well. I don't have the appearance issues of rsd but I do have rsd and was dx with this as well as PN from many doctors. The first doctor who dx rsd was my neuro but then I also was dx by pain management doc who deal with rsd. I also didn't have an injury though was active in exercise before this but went to the orthopedic right away when the pain started with no fracture or break. I'm not sure where you live but I would try to find a PM doc who deals with rsd to get going on treatment asap especially since you have had extensive testing. Feel better

Thank you all for responding. My only problem is the burning, tingling, skin sensitivity. No edema (swelling), redness or other color changes,now or ever. Began in left arm, now pretty much all extremities. Originally thought to be peripheral neuropathy but all tests for that negative. I have no motor problems, exercise, etc. Do not have horrible pain as yet but discomfort increases as the day goes on and generally is increasing over time. I find vicodin helps somewhat, also am taking neurontin which possibly helps (seems worse without it). Some days better than others. Also another injury which happened five years ago...auto accident in which I was rear-ended. Shortly thereafter developed cervical dystonia which I receive Botox injections every three months but the burning, etc. started 3 years after the accident. So the torn rotator cuff actually occurred shortly before the burning, etc. But wonder if the other could be contributing. I have seen 3 neurologists...one a movement disorder specialist for the cervical dystonia and botox...he isnt much interested in anything not relating to his specialty, saw a peripheral neuropathy specialist who did all the tests for neuropathy and he had nothing to say, see a local "general" neurologist who is pretty much more or less typical neurological stuff...MS, stroke, migraines, etc. So, need to find someone possibly with knowledge of crps. Know I sound like a nut to my PC and my general neuro because nothing is "seen". At least with the cervical dystonia there are definite symptoms. So guess I will keep on eating well, exercising and trying to make do and of course researching crps. Thanks all for allowing me the venting and the welcome to the BB.