Can you have RSD without skin changes ?

[finz]

Obviously, this is something that I will discuss with my new doctor when I see him, but I've been thinking a lot about if I might have RSD.

I have been struggling with severe neck pain, specifically it feels like a burning golf ball approx 1 inch to the left of T1 to T2. I have had issues getting treatment and a diagnosis because it is a worker's comp case.

I finally have made contact with a new neurologist who hopefully will be able to help. I am now seeing a PT and having decent results for treatment of TOS.

My symptoms include:

-burning golf ball approx 1 inch to the left of T1 to T2, pain freq radiates to L scapula/shoulder/traps/arm
-Numbness and tingling down L arm and ring/pinky fingers (this improved with PT)
-severe L occipital headaches
-dizzyness
difficulty concentrating
general achiness
fatigue, severe at times

I do have a firm dx of TOS, cervical arthritis, and C6-7 disc bulge

I am questioning if fibro and or RSD might be involved too.....
questioning RSD d/t severe (at times, but it does change) burning pain, area is sensitive to touch....clothes scratch, etc, profuse sweating,the skin feels rougher in that area and is frequently swollen, but there is no color change. I can't really see if there is any hair there (I'm a female, don't have a hairy back)Mostly, the pain just seems out of proportion to my original lifting injury (which is the lingo I've heard used on listing sx's of RSD, which is what got me thinking this way)

Is a change in the skin color always present in RSD ?

[mbrfz]

Finn, in the begining mine was very apparenent, red swollen , hot.. later 1.5 yeears into it., dusky blue hue, nothing dramatic. and swelling. Each case is different.. but my skin is shinny , and has blue hue, again nothing dramatic. I had the nails grow like weeds for a while.. I had never had long nails before.. and then nothing- short brittle broken, my toenails still grow like Howard Hughes however.. Hair changes one brief stint I can remember in year one, black hairs on legs, im a blonde. My diagnosising doctors wrote, does not display typical rsd symptoms, so you see everyone is different. I have full body rsd. Hope this helps you.

[Rob123]

Hi Finz, Can I ask you a Question,where do you profuse sweat at is it your under neath your arms or around your neck area,why I'm asking is that my Doctor diagnose me with cervical RSD and I sweat terribably under neath my Arms and the back of my neck.Sometimes my skin is reddish color and very sensitive to touch.

Rob

[finz]

Hi Rob,

My sweating is head, neck, trunk,arms. I use deoderant, so my armpits are about the only thing not sweating ;)

My neck/trap area was pink and puffy about six months into my injury, but not anymore. My neck and upper arms can be very splotchy, look black and blue, when the pain is high, but not most of the time.

My nails and hair have always grown very quickly, so hard to tell (cut my hair 12 months ago for Locks of Love and almost ready to do it again)

[rainbow422@aol.com]

I have RSD and my skin changes were intense in the begining. My skin would change colors and such. Now I am about 7 months in and although it had wonderfully spread from one arm to the other, the skin seems pretty normal these days.

I do not know if this helps you at all...

Definately I would speak in detail with your Dr.

Gentle Hugs!

[alphacentauri855]

Hi..I have had RSD now for 9 years..my skin has a bluish hue also. sometimes they are mottled (spotted)..my fingernails at first grew fast and has slowed down, but they ended up all the fingernails with speed bumps (ridges). as time goes by the ridges get more pronounced..My toenails grow so slow I can't remember the last time I had to trim them..also the big toenails have a tendency to split across the middle and lift up which worries me that I may get them snagged on something and they will rip off..There is swelling in my hands and feet not always at the same time. Today as of now there is no swelling..Have to take each day or hour as it comes..sounds as if you may have RSD but a pain specialist is your best bet..and remember everyone is different. some experience all the symptoms while others don't..if you don't count your blessings..

[rainbow422@aol.com]

I although alot of the skin changes have gone away, I do have nail changes. Ridging and pitting in both hands, all finger nails. Also, now that I have had this for about 7-8 months, my hands do not look the same to me. My DH says I pay way to much time looking at them. I still have swelling in my fingers that has not gone away. When I have a flareup, they do get a mottled appearance. Palms, red and blotchy and tops appear paler than normal.

Peace and wellness to you my friend!

Gentle Hugs

Rain

[kikipappy]

Hi everyone.
I've been gone from the forum for a while now. I had no idea that the forum had been down for so long and I recognize very few names. So, I guess I'm considered a newbie again!

Finz- you and I sound like we are twins! I have TOS and had a decompression surgery in '98 along with a surgical sympathectomy. That sympathectomy ruined my life. The pain returned with a vengeance over 2-6 weeks postop.I am currently recovering from an anterior discectomy with fusion which was done in Oct. 2006 for bilateral nerve root compression at C6-7.

I have had RSD for about 12 years now.I've had previous fusion at C4-5, C5-6 in '97 for the same reason. I need to have C7-T1 and C3-4 repaired. My cervical spine specialist and I had decided that since I have RSD that he would repair the worst of the 3 levels and only do just one so he could go in and get out quickly.I have had some flare up since the surgery and unfortunately I am having more nerve pain down my left arm now than before the surgery. He used an experimental fusing compound called bone morphogenetic protein rather than grafting from my hip as before. The graft has not yet completely "settled in". It is irritating my nerve roots because there is still movement in the joint. He has ordered a bone growth stimulator to try and speed up the process of fusion.Prior to surgery, the RSD was confined mostly to my entire rt side and with occasional symptoms on my left side both arm and leg.

I have also had 2 right shoulder decompressions for shoulder impingement syndrome and acromioplasty for a large bone spur on my shoulder.

I've been a volunteer in 2 RSD studies at the NINDS-National Institute of Neurological Disorders and Stroke at the NIH in Bethesda, Maryland. They helped to confirm my RSD diagnosis as much as it's possible to confirm it. I have cardiac problems from the RSd and the 2nd study helped me to be put on the correct medication to stop a resting heartbeat of 150-168. For that, I take clonidine and propranolol. BTW, the NINDS researchers advised me to avoid the sympathectomy and in a moment of pitiful weakness I caved in and have never stopped regretting it.

I have had extensive PT over the years and I credit my PT with basically giving my life back to me after the TOS decompression and sympathectomy. She worked on me for a year and a half for all the knots and muscle spasms etc. The manual work while painful, helped me to gain some tolerance for touch. When she first started I barely let her touch me as it was so painful, She did lots of positional release techniques and the results were amazing over time. I, too, had that horrible knot just off my shoulder and at the top middle border of my shuolder blade. It was as if someone was stabbing me with a hot searing poker. I ended PT in 2001 and it wasn't until about 2005 that the knots began to return although nothing nearly as bad as they were.

I also have fibromyalgia, myofascial pain syndrome, arthritis, diabetes, femoral neuritis and have been having severe nerve pain in my hands and feet which I think is caused by some type of neuropathy not yet diagnosed. I am unable to take Topamax, Neurontin, Lamotrigine, Tegretol etc. I can't even make a complete sentence on the lowest dose of Neurontin and I refuse to trade quality of life. I have three precious grandchildren and they make me profoundly glad to wake up each day. I can't imagine life without them even 2 of them are shall we say...feisty and rambunctious! LOL After they've been here for a visit, it takes me 2 days to recover! My 4 year old grandson is very well behaved and polite. I wish he'd loosen up a bit. I also have a great husband and 4 wonderful grown children-3 are married and one thinks she has finally found "Mr. Right"! (thank goodness!)

I developed RSD after a lifting injury at work. I was a neonatal nurse at a pediatric hospital and was pulled to work in the pediatric ICU stepdown called the Transitional Care Unit. I was assigned to a 35 pound toddler who was coincidentally a NICU graduate. I pulled him up in bed as he was paralyzed with medication so he wouldn't fight his endotracheal tube assisting him to breathe while on a ventilator. I felt a God awful pain in my shoulder and neck and life hasn't been the same since. I had to give up my beloved career as a nurse. I have now been a nurse for almost 33 years and actively practiced for 23 years. I am currently receiving Social Security Disability. It took having to hire a lawyer in spite of 23 medical opinions that I wsa no longer able to work. I won within the first 15 minutes of the hearing and the judge apologized for it having got to that stage.

I just wanted to stop in and introduce myself to those I don't already know. The forum was a powerful force in helping me to keep my sanity and was quite something to behold. Without my friends here, God only knows where I'd be now.

If anyone is considering having a sympathectomy...PLEASE leave a message for me so I can tell you about my experience in more detail.

Over these last 12 years, I have seen more than 56 doctors in my search to find answers and once found, to maintain some semblance of health. I refused to give up and I refused to pay for substandard care. Doctors played a huge part in the way health care is delivered today. They wanted a business and they got their businesses only some of them don't seem to get it that they work for the patient. I am under the care of a wonderful pain management doctor, a great cervical spine specialist, a very knowledgeable gastroenterologist, a cardiologist who had the courage to ask for help when he didn't have an answer and a very mediocre internist who will be replaced as soon as I find another one who can handle a patient with a long and complicated history. You have a right to decent medical care and to have your pain relieved. Learn to be assertive without being aggressive or they will just label you as a nut. They tried with me and it didn't work because I wouldn't allow them to get by with it.

OK, I'm still as windy as ever when it comes to explaining things. Sorry if you're all asleep by now. Thanks for listening if you're still awake!

Warm personal regards,
kikipappy aka "pappy"

[EJK]

HELLO PAPPY!

It is good to see you back with us..

EJ

[LuvNAngel]

I am a newly dx RSDer. With alot of other complications going on I dont know where to begin in the forum.
A brief history I was a Respiratory Therapist. I hurt my lower back doin CPR in 1999. Long time ago! Im still an open case with workmens comp. An AME said To say this case is complicated is an understatement. I put that there cus thats how I feel most of the time.

Before I go on I need to say I dont know why I do this but since all this mess with my body I tend to leave out words when I type. If someone can explain this I would appreciate it. I do have short term memory loss. Saying this I hope this makes sense.

Since my injury I have had 7 back surgeries. The first one was a routine lower laminectamy. Everything went fine. I went home and 3 days later I lost complete control of bowels, rushed to ER. Another surgery for Cauda Equina Syndrome. Ive never been able to get rid of the pain i have in my left buttocks area. Its the worse. Spasms. My left hip spasms. Anyway, next came serveral procedures like I tried an neuro stimulator that was two procedures. I had alot of injections into my spine. I lived on drugs, basically anything I wanted. I thank God today that Im allergic to Morphine. My last two surgeries around Dec. 2003 were brought on because my blood work results came very messed up. No reasoning behind what they read. I saw an Infectious Disease dr. he said my body was rejecting everything they put in me. Because I have Hishomoto's Thyroiditis. I had to have two differant surgeries to get it removed. I still had the nerve stimulator in, which I had to stop using, so I wires going up my spine. I also had a bone stimulator plus the bars for the lower lam. It all had to come out.

So here I am a single parent of three. My poor kids are taking care of me for years. I was living on narcotics. I moved and found a new dr who referred me to a pain clinic. The doctor there is an expert in his field,especially RSD.. I had never heard of RSD. So I went to this pain clinic. I had to be interviewed and accepted or rejected. I was gratfully accepted. I spent 7 days in detox at Stanford. Then I lived at this pain clinic for a month. It was Awesome! I have been narcotic free since May 2004!!!!

Mind you I have pain. Sometimes its terrible. Im on alot of meds. But I have so much other stuff going on its like all try to work together. I have positive drop foot on the left side. I wears my Uggs everywhere (even to bed). I have twitching in my limbs, especially when Im tired. On bad days I could fall asleep just by closing my eyes. I fall asleep talking to people. I dont let anyone or anything touch my back or my left side. I have (spelling) Angroaphobia? anxiety about going outside. Sever depression. And my hands hurt sometimes so bad I touch anything. They burn and get red. They will stay like that for days. I have asked every doctor Ived seen, mind you thats alot, and they all say Reynauds. I dont think so. Its nothing like it. In fact ice cold makes them feel good. I wish I could associate with my injury.

The RSD in on my lower left leg. I feel like like I have a line down my body. Everything bad is on the left. Although Im beginning to think RSD might be moving in to the right leg also since the pain has woke me up several times. Both legs are so cold.

One more thing, Im rambling, sorry. Sometimes I feel like the inside of me is shaking, trembling. Its a terrible feeling. It just happens. Sometimes I think it might be more when Im tired but Im not sure. It feels like Im trying to get out of my skin. I dont know what it is. I call it my flare ups? Ive to explain it the drs and they look clueless. Any input on this and my hands I would appreciate. Thanks for the time...

[LuvNAngel]

I think I put this as a reply instead of a thread? Can it be changed? Im new at all this lol thanks :(

[ONLYGRACE]

Wow.. What can I say.. When I read a lot of these posts it's like reading my own lifes story. My user name is OnlyGrace. I chose that name because it is only by GOD's Grace that I or my wife have been able to deal with this wonderful ongoing disease known as RSD. I was finally diagnosed with RSD about 6 months ago but have been dealing with it for the past 4 years. It all stemed from having multiple back fusion surgeries. My first was when I was 14 but the RSD started after my Dec. 03' surgery and it only worsended after the Nov. 05' cervical fusion. Like many of you it was very frustrating having to go to one doctor after another and many different opinions about the diagnosis. As you all know the pain/achiness/fatigue/memory loss/stabbing/sweating/spasms/skin color ect; can all become very frustrating, especially when the medications stops working and they have you maxed out on your pain meds. I say all of this to say that it's only by GOD's wonderful Grace and the Love of my dear wife that I can make it through each day. I'm glad to be a part of this forum and I look forward to getting to know each of you. God Bless each of you and even though I don't know each of you by name, we will be praying for each of you.. Talk to you all soon..:)

[ali2k7]

Hi there,
It does say on the internet that you do not have to have all of the symptoms of RSD, the most common symptoms are:
Hypersenstivity
Really bad burning/sharp/shooting pain
Muscle spasms
If I was you I would discuss it with your PM doctor when you see him.
Let us know how you get on
Pain free hugs
Alison

[kathrynmham]

Wow. I have a lot of pain, horrible sadness about my fight and always feel like giving up. I just started on an anti-depressant, so hopefully that will help. But, I read some of your stories and I just can't imagine. I only have the RSD/CRPS in my right leg. Were it my whole body, I don't think I could bear it.
I had three back surgeries and an artificial disc last year. I spent 29 days of the past year in the hospital. I have a two year old son, so it has been very hard on my family. My husband took off of work to care for me and his position was eliminated from his company. So, he is now looking for work while he's trying to care for me. My social security is "pending" so we're praying it goes through.
I tell you all of this because it's kind of similar to your story. And I wanted to say how sorry I am that you're induring such a terrible amount of pain and not getting a firm diagnosis to sink your teeth into. I know it gave me a lot of hope finally being diagnosed and knowing what I was fighting. I will pray that you have that blessing amdist all of your suffering.
Finally, I wanted to say that your symptoms aren't like mine, so I couldn't say for sure if you're fighting RSD. I have the skin color changes and the burning pain. It feels like my foot is swollen stiff, but it looks pretty normal when it's propped up and I'm supine. I have the "jolts" which is my own term for these electric shocks I get when I'm tired and lying down. They never hit when I'm sitting up for some reason.
I also have a dirty water taste in my mouth that I simply cannot get rid of. I don't know how to describe that either, but it's very annoying! Oh, and night sweats.
I hope you get a firm diagnosis and that it ISN'T RSD! This is a terrible, terrible illness and I wouldn't wish it on anyone. So little is known about the causation that it's like fighting a tiger in the dark most of the time.
GOOD LUCK TO YOU and keep us updated on your findings when you get them...
Soft Hugs,
Kathryn

[ONLYGRACE]

I agree. This is a terrible illness/disease. The not knowing part is the worse. Finally after almost 4 yrs. I was diagnosed and it's almost a sigh of relief hearing the Docs say what we knew for so long.. The night sweats, internal tremors, loss of memory ect, ect, ect.. is so frustrating but we have to continue on and not give up.. God Bless Each of You and Your Familes..:)