Anyone have the cold hand CRPS?
 

I have CRPS, the cold hand type. I do not have burning pain, but pain that feels like a bolt is being stabbed through my wrist by the top wrist bone. When it swells, it is hard to move and is achy most of the time. When I get flare ups, the swelling feels like my circulation is cut off and the above pain is 10 times worse. Sometimes the pain encompasses the whole top of my hand, both sides of my wrist, up my arm and sometimes makes my neck and back ache. Nothing gets rid of the pain. It can last for days off and on during the day and sometimes at night. Gabapentin helps with the everyday pain and the nerve pain, but does not help with the flare ups and achy pain. The mementine also helps with the everyday pain but not the achy pain during the flare ups. I am allergic to antidepressants. I am allergic to lidocaine too. Does anyone have any ideas that worked for them? I am going to go to a pain psychologist, but I don't think that will get rid of this pain. I don't know what to do next. I am in the beginning stages, so I know it can be a lot worse. It is hard to imagine, but I know it can be worse.
I have other medical issues in addition to the CRPS in my wrist. I get confused on which one is causing the pain. The CRPS or the medical issues? Since the medication doesn't help with the flare ups, then is it the other medical issues causing the pain?

UC,
do you have a Great RSD doctor, a neuro, hopefully?
How long since you were diagnosed?
Where (about) do you live?

Were you dx'd with TOS? ()Thoracic Outlet Syndrome? Ulner Nerve or anything else like that? Have you studied TOS? There is a section here, for that!

Be sure to have a Neuro, send you to a 'Hand/arm/shoulder surgeon! To make the final Diagnoses on TOS!? OK?

I have RSD/TOS for 28 years.
Then another accident caused a TBI, and four discs, and really cranked the other two out into space, and gave me sleep apnea.

(I'm sick).

But, you are too, and we want to get you better!
If you have CRPS, in your arms, wrists, you may surely have Thoracic Outlet Syndrome! Tell us how you were hurt?
Whiplash at all? (I'd bet).

Please, understand, I'm not trying to dig, I'm trying to help, as we all are, but we need a certain amount of info, and, for the most part, none of us are doctors, we can only relate to and by our own circus stances!

Hope you feel better soon.

Give us your history of injury, your history of docs, and meds, if you'd like.

Thanks! UC!

Pete

ASB

Thank you for replying. I live in Washington state. I have a great RSD Dr, but he is not a neuro. I have been diagnosed since April, but the areas of pain keep growing. It started with an injury to the ulnar wrist. Heavy lifting and twisting. I went to several hand surgeons trying to find out what was causing the pain and how to fix it. I had several minor problems in my wrist, such as tendonitis, a bone cyst, a small tear, and chrondomalacia. There really wasn't anything to fix, because the pain was not where it was supposed to be. It was a struggle to find the right person to address the pain issues. Although I had 2 injections, the pain was worse than when it started 2 years ago.

Many years ago I was in a car accident, had whiplash, cervical strain, a few damaged discs and ligaments in my back and neck, and only recently have revisited the neck and back pain on the same side as my wrist injury.
I have not been diagnosed with TOS. I have had the nerve conduction study and everything was normal.
I am on Gabapentin and Memantine as I am allergic to antidepressants and lidocaine. I most likely will not be able to tolerate the opiates and other drugs, since I am very sensitive to medications, alcohol, and anesthesia. Very sick with general anethesia. 11 hours of vomiting...... with the last surgery. I am afraid of meds because I get very sick. It is a shame to have this condition because I will be hard to treat.
Thank you for your interest. It was very nice to hear from you.

general anesthesia makes me so nauseous. I finally found a nurese anestetist who believed me and gave me less and gave me a stick on dot to put on the back of my ear. No nausea that time and I woke up when supposed to. It normally takes me 3 days to come out of the hangover because i have such a slow metabolism. Last epidural I had, I explained to the gentleman that the time before they were beginning to worry about me because it took me 1 hour to come around. He must have went back and read my record because this time he switched and gave me something different and I was awake in 15-20 minutes.

I have it in both feet. Have you tried soaking in epsoms salts? If I leave my feet in the water for 1-2 hours, my pain is nearly gone, and my feet are a more normal temp, instead of 70 to 75 degrees.

Try vitamin c intravenous infusions! They are so great and have helped me stop my rsd from spreading. To find a doctor who does them in you area, go to the American College for Advancement in Medicine website or call them (that's what my docor told me to find other doctors who do the iv's across the country.

Best of lucks!

Cold hand crps?
 

I have it aswell, ... kind of anyways. I have cold foot crps. I've been diagnosed by doctors a few times this year actually, but wcb wanted one of their doctors to do an exam to confirm it. I just got home from the wcb main office today, and the wcb doctor confirmed it is crps. He told me that wcb is likely to send me off to get sympathetic nerve blocks, and basically his opinion is that they do diddly squat:( . I for one will try anything!!!, I have been trying laser therapy, and lately acupuncture ( in spots that aren't affected by crps, but that the acupuncturist says are related to it). Nothings really working at all so far, all I am left with is how to deal with pain accordingly on a day to day basis. I'm managing to cope with it somewhat, but it is rather disheartening.

Very sorry to hear of your fairly new diagnosis, it is never a good thing to hear. BUT thankfully there are these forums full of people who do know what we are all going through daily and can offer suggestions.

I have CRPS in my hands and it is no where near the degree of seriousness from what I have read on here and other forums, but it is my pain nonetheless, a pain I never had before. I have endured 10 hand surgeries between both hands in 3 1/2 years, multpile cortisone injections (which caused more pain) tried many pain med's (which I refuse to take narcotics, to afraid of them) so i take Topamax and Cymbalta for pain. I see a pain mngmnt Dr. and have had 8 Stellate ganglion injections (which have helped some, but not enough to continue having a needle jammed into my neck). I was issued a Tens Unit which sends electrical surges through wires/patches to the affected area to stimulate the nerves.

I have the cold sensation in my hands but not all of the time. I have burning on fire feeling with pin prickling but at any given moment the hands go ice cold and numb. Although they hurt, I am told it is super important to continue to massage them and stretch them, to keep them from getting imobile. Some people cannot do that due to their pain level, I can, with extreme pain for the aftermath. There is no one right medication, no one right treatment as we all respond differently to everything. It is a lifelong illness, one that we have to mentally accept sooner than later because we need our mental strength to make up for the loss of our physical loss and cope with our limitations. It is a daily, hourly struggle, but as I said, thank goodness for these forums. Whatever you do, do not give up hope that you will find a way to manage the pain, it may take time, and there may be better days than others, but hang in there and ask any questions you may have!!! Good luck!:grouphug:

I am new to this site as I have been diagnosed with CRPS late in this last November. I had my foot run over by an automobile and my foot stays cold while the rest of my body is normal temperature. The pain is starting to spread through my leg and up to my thigh. I constantly feel as if my foot (sometimes leg) is bare skinned in snow. It's taking a toll on me mentally as well as physically. Sometimes I get the sharp stabbing pains in my other foot which is confusing. I have seen an Orthopedic Specialist that has prescribed Lyrica and Amitriptyline. I have also had 3 nerve blocks. Neither give me relief and I've been advised to get the neurostimulator in my back. I feel like I am a mystery. The pain has caused me to go to the ER a couple times and the Drs there have no clue as they have said they never heard of my symptoms as they feel my freezing foot. My primary Dr is referring me to John Hopkins to get a 2nd opinion from another Orthopedic specialist. I had 4 fractures and a broken bone but I believe they are healed. I'm not sure why an Orthopedic Specialist is referred to me to help with my CRPS. Can someone please tell me what kind of doctor I should be seeing. I am at my wits end and the mental effects are wearing me down. Thank you in advance!

I have temperature regulation dysfunction in both hands and feet, even though the severe burning pain is (usually) just in my dominant hand. Sometimes both hands will get ice cold, or my right hand and left foot, or both feet, etc. Warm water with Epsom salts works best for me. Using an infrared heater seems to help as well.

UNCERTAIN,

When your pain increases, are you "guarding" your hand to protect it?

I developed a habit of guarding in the first few years that ended up causing all kinds of problems--the pain travelled up my arm, to my elbow, to my shoulder, to my neck, and down my back. It also caused my hand to atrophy.

With the help of a pain psychologist I was able to break the guarding habit, but it had become so second nature that it was not easy--a big understatement. I still have the lingering issues with the pathway to my back, but they are much less severe than they were. My back will still get random muscle spasms and being in warm water helps, if things get out of whack enough I schedule a series of massages and have needed trigger point injections (I believe that's what the doc called them?) as well. Lidocaine patches can help, and sometimes I use Epsom salt cream if taking a bath or swimming is not an option.