Complex Regional Pain Syndrome

[potsgirl]

Hola!

I was just diagnosed with complex regional pain syndrome and am wondering if anyone else on the Forum has heard of it before. It's a neurological disease, uncommon, that affects your hand(s) and/or one or both of your feet. It started with pain in my right hand, the middle knuckles especially, but now my whole hand, wrist, and up to my elbow has so much pain I can hardly stand it. It's starting to affect my left hand, too, and my feet have also shown symptoms.

It's very scary because I can't drive or open jars unless the lids are loose, can hardly type, and have to hold the phone with my left hand. There is no cure, and it can continue to be progressive, moving across your body. I've tried Lyrica, which didn't help, and today I start on Neurontin, which will be a new drug for me. Any experiences with Neurontin? I'm seeing a specialist in early October.

Any input will be appreciated!

Cheers,

Jana

[janiedelite]

Hi Jana,

I'm so sorry that you find yourself in so much pain! I don't have CRPS but do take gabapentin/neurontin 1800mg/day (I was up to 2700 mg/day). I had to wean slowly up to that dose. The only side effects I have from it are slightly increased fatigue (which goes away after being at the target dose for a few weeks). It also causes constipation which I treat with Milk of Mag. I take neurontin for the burning skin pain associated with my POTS. My burning pain is always in my feet, hands, mouth and face. During times of stress, heat, or caffeine the pain increases and spreads inward to my torso as well. I don't have joint pain or difficulty using my joints, but I have to dress according to my pain (open shoes, no socks, short sleeves, etc). NSAIDS/advil don't touch this pain, and I take small bits of vicodin when it's bad.

There are docs who specialize in CRPS. Maybe there are clinical studies you could try? Again, I hope you find an effective treatment and I'm so sorry you have to go through this. When my burning pain started 2 years ago, I thought I was either going crazy or that I would be driven crazy from the pain. I went to a therapist to talk about my pain because I was wearing out my close friends and family with my complaints. My POTS tachycardia seems to be improving over the past 6 months, but the burning pain still persists.

[potsgirl]

Thanks for the encouragement, and I'm sorry you have to deal with chronic pain, too. I took my first dose of Neurontin this morning, and I feel drugged and dizzy. I took 300 mg, and I'm supposed to set up my dosage slowly. I really hope this works, since the Percocet and Lyrica just didn't seem to do anything.

Do you use any kind of wrist/hand brace to help you with things like typing? I've been thinking about trying that.

Thanks again, and best wishes~

Jana

[pat57]

I have heard of it, and I have some idea of what your talking about. i have something, a vascular spasm. It looks like spontanous bruising,

the pain lasts as long as the "bruise". Thank God.

You certainly have my sympathies.

Does ice helpyou at all? it does help me.

I have also been on Neuroutin, and like the other poster had to aclimate to it. Takes 3 days for each dose

increase- I think.

good luck

[issie]

Jana,

Just read about the syndrome you got diagnosised with. I know you've had heart issues and a pace maker put in. Is that when your symptoms started? What I read is that it could happen with a heart attack or injury to the nerves. Did the POTS cause it, since it affects our nervous system? Why??????? Could it be related to a neuropathy? There are some autoimmune neuropathies. I know you have another appt. so here's hoping you can get some answers. Hang in there - you got a lot going on. Hope the neurotin helps with the pain. I also take Tumeric and Ginger. This also helps with inflamation and pain. Let us know how you do!!!!!!

[Noreen]

Hi Jana-

did they do a bone scan to diagnose you? I don't have the results of mine yet.

I have a variety of wrist splints and braces from dealing with RA, hypermobility syndrome, and chronic wrist pain from a work injury. It depends where the pain is whether a brace (and which one) might help.

I use lidocaine patches on my wrist and generally put a brace on over it to keep it in place. the lidocaine patches help and were prescribed by a physiatrist, As I am on Topamax I can't do Neurontin.

Cymbalta 60 mg bid helped for several years. It was originally developed for chronic pain.

What type of doctor are you seeing?

[nforste]

Hi Jana,

I'm sorry to hear you have complex regional pain syndrome. My aunt's mum has it - not sure about what drugs she takes, but I know she's found swimming to be quite effective in keeping her joints mobile etc. It's mainly her feet that trouble her.

[tinkerbella]

Jana,

SORRY MY FRIEND....YOU SOUND LIKE ME...Did they do an emg? I have cubital and carpal tunnel in arm and hands. I need braces to wear to avoid surgery. It hurts to type. All the salt doesn't help either. I need to get out my voice to text software and start using it again.

I'm so sorry you are having such a rough time. Neurtion, made me like a drunk, same with lyercia. I hope you find some relief.

HUGS, HUGS, AND MORE HUGS.....

<3 U AND U R IN MY PRAYERS,

Bellamia

[potsgirl]

Thanks for all the input, ladies!

I am scheduled for an EMG soon, and then I'll be going to a neurological specialist in about 8 weeks. I'm really hoping I can get in earlier. It's in both of my hands now, and my feet have started with the early signs. Until I see the specialist, I won't know what's causing it, but thank you for all of your suggestions.

Pat57: Sometimes ice helps, and sometimes heat. I've tried "Icy/Hot" but the smell is too overpowering. My first 300 mg dose of Neurontin kicked my rear yesterday and my BP/HR numbers this morning are not good. I couldn't use Lyrica, so hopefully I can tolerate the N. Sorry you're suffering, too.

Issie: Thanks for the info here and on email!

Reen: No, they haven't done a bone scan yet, but I'm sure it's coming eventually. I have nodes growing on my knuckles which really notch up the pain. I'm glad your splints worked for you. I'm definitely going to try that. I may look into the lidocaine patches, too.

sunburnt_land: Thanks. Swimming is a great idea if my feet get any worse. Right now, I'm trying to keep walking on the treadmill for my osteoporosis.

BellaMia: You sweetie. As above, yes, I'm scheduled for an EMG soon. I thought I had carpal tunnel, but that's not the case. Typing does hurt, doesn't it? I may be looking at voice to text software also as this syndrome is supposedly progressive. HUGS back at cha!

Thanks to all! You're life-savers.

Cheers,

Jana

[issie]

Jana,

Just read an article showing that vitamin B1 may help this. It was on the Life Extension web. Do some research and see if you can find anything.

Also, just as a side note: If you are having surgery ----stop the Ginger in advance. It does thin the blood.

[tinkerbella]

Jana,

I GET A B12 SHOT once a month, that seem to help and the neuro felt it was necessary after my emg and all that is wrong with me.

Bless you,

bellamia~*

[potsgirl]

Issie & BellaMia~

Thanks for the vitamin B advice. I just read that on the official web site for complex regional pain syndrome (CRPS). I'll start taking more B vitamins and see if that helps, especially since it's now begun affecting my left hand and both feet. Thanks for the good info! I'm calling my internist Monday to see if I can get in sooner to the specialist, since this seems to be moving so fast...pretty scary.

Cheers,

Jana

[potsgirl]

Something new....I just found out that this syndrome can be the result of an injury, heart disease, cerebral lesions, surgery, or the cause can be unknown. Also, it's commonly associated with the autonomic nervous system. It's important to get treatment ASAP, and to find out which part of the brain and nerves are specifically involved to get the correct treatment. Just some FYI for others...

[pat57]

Jana, do you get any skin color changes in the effected areas? I ask because my issue is still undiagnosed . Unless ' Likely Raynauds' counts.

Since ice is soothing, I know it's not Raynauds. Also it's injury related. it started at work, an Ice cream specialty restaurant. Its from trying to scoop rock hard ice cream.

Its moved to both hands even tho I did not scoop ice cream with my left hand.

thanks

[potsgirl]

Yes, I do get color changes to an extent, and also heat/cold changes. Mostly a kind of mottled-red color, and one hand may be hot while the other is normal or even cold. I would definitely look into this pain syndrome if I were you. Make sure you have a good neurologist. I use my right hand for almost everything, but my left hand is now as bad as my right, as happened to you. Let me know what you find out, or if you have more questions, you can also PM me!

[pat57]

Thanks for the reply. I believe I'll mention it to my PCP next visit.

[tinkerbella]

Another thing my pots spec. told me all emgs are not the same as I had two different ones with different readings. I called the second one a fake one at a certain place where they used a totally different technique and talked on the phone at the same time to a friend. She my neuro said she didn't believe in there results. First results were done at top notch place.

I'm sure you are going to a good place, but I just wanted to let all know that.

Bellamia

[Rafiki]

Jana,

Sorry to hear about the possible RSD/CRPS diagnosis. Plead with your doctor to get you in as early as possible. Quick treatment is the key to going into possible remission. I was diagnosed with RSD in 2002 after spraining my left ankle. I tried many treatments and medications, but what I think helped the most was Topamax (neurontin only made me gain weight), nerve blocks, and PT. For about 2 years I was in pretty intensive pain, but I did go into remission and don't have any problems with pain now. Try and keep a positive attitude, some people do go into remission, but the stories you read on the web are very scary. People who stop having pain, also stop hanging out on the forums, so you don't hear about them. I take lots of B 12 as well as other B vitamins and when ever I need any surgery or invasive treatment, I have a nerve block done first to try and prevent it from coming back.

I was diagnosed with POTS last summer, but found relief with Midodrine. I am now off all medication and my blood pressure has pretty much leveled out. My HR still goes crazy when I stand up, but I am functioning normally. No major problems now, even though a year ago I couldn't get out of bed. I am so thankful that I have come through both of these weird conditions and just want to encourage you to have hope.

I have wondered if there was any link between the two conditions, but haven't found any. Take care and start all the possible treatments as soon as possible.

Debbie

[comfortzone]

I've had that syndrome mentioned more than once - when I had arm pain after having knee replacements right and left. Then both arms and then legs and then pretty much bodywide pain. Yet some said it was my hypermobility syndrome. I don't really know. I went to a podiatrist - a new one and told him it feels like sharks are gnawing on my toes every night and to some extent the later hours of the day. He said that an interesting point that much of the public is unaware of is that neuropathy or pain in the feet that's at night and not related to walking pain - say from a neuroma - is that up to 25% of the general public has it - and absolutely nothing is wrong.... Meaning no disease state in specific causing the the neuropathy. He's right - I didn't know that.

I take Norco for pain. Didn't like the appetite I acquired while on Neurontin. But truly the bottom line for me is that most medication have me feeling foggy and out of it even after the initial 'get used to it' period is over - and nothing yet has helped my symptoms of pain behind the knees, in my feet, the stiffness and pain in my hands and elbows, neck and shoulders even.

I may try low dose Methadone soon as I'm getting to the point of hating to have to take pills 3 to 4 times a day for mild relief. I was terrified of the idea at first - but after 2 years of no one knowing what's going on - I guess I'll explore my options to help relieve the pain - even if it's Methadone.

One doctor suggested I try a different pain management guy that does a lot of diagnostics for bizarre and odd cases that are particularly hard for regular specialists to figure out. He's in Marina Del Ray California - but I'm not ready to go that route just yet....

I truly truly hope that you can push through this latest diagnosis with courage and hope and all things good that bring you to healing inside and out - you deserve the best life you can live for sure!

[potsgirl]

Rafiki & nowwhat!

Thanks for your thoughtful replies. I am calling my internist today to call the specialist at Barrow to try to get me in sooner than my October 11th appointment. I have found a site or two on the Internet that shows a link between autonomic nervous system dysfunction and CRPS.

I'm sorry that you both had to suffer through the same/similar things, and thanks for you well wishes! Will let everyone know what I eventually find out.

Cheers,

Jana