[canagirl]

Hello all,

I have posted here before but I am still confused. I have severe burning and stinging bodywide, 24/7 entire body vibrates and twitches (literally never stops and it's not a twitch in my arm then my leg etc. it's literally everywhere, every second, hundreds per minute). it's like my body is having permanent internal seizures that nobody can see. I have tingling and it feels like there are bands around my arms and legs that are cutting off my circulation. Certain parts of me pulse and throb such as my cheeks, neck, biceps, elbows, thigh right above my knee, calf right under my knee ( I swear to my heartbeat, but cardio says that's not possible). I feel like I have nerves trapped all over my body. I touch the underside of my wrist on something and tingles shoot down, I touch my elbow on something and tingles shoot down.

I don't have swelling, color changes, temperature changes, rashes, nothing VISIBLE to indicate there is a problem. Is it possible to have RSD/CRPS without these things? If so, HOW do you get diagnosed?

What can I do to help myself heal? I take mg, vitamin d, vitamin c, omega 3 and gabapentin. Nothing is helping. I am literally at the end of my rope...

[Jennijojo]

Originally Posted by canagirl

Hello all,

I have posted here before but I am still confused. I have severe burning and stinging bodywide, 24/7 entire body vibrates and twitches (literally never stops and it's not a twitch in my arm then my leg etc. it's literally everywhere, every second, hundreds per minute). it's like my body is having permanent internal seizures that nobody can see. I have tingling and it feels like there are bands around my arms and legs that are cutting off my circulation. Certain parts of me pulse and throb such as my cheeks, neck, biceps, elbows, thigh right above my knee, calf right under my knee ( I swear to my heartbeat, but cardio says that's not possible). I feel like I have nerves trapped all over my body. I touch the underside of my wrist on something and tingles shoot down, I touch my elbow on something and tingles shoot down.

I don't have swelling, color changes, temperature changes, rashes, nothing VISIBLE to indicate there is a problem. Is it possible to have RSD/CRPS without these things? If so, HOW do you get diagnosed?

What can I do to help myself heal? I take mg, vitamin d, vitamin c, omega 3 and gabapentin. Nothing is helping. I am literally at the end of my rope...

That sounds horrible!
I have color change only sometimes, well if you mean blue or red. My hand is a different color than the other. But not dramatic. I get purple when I don't use my hand much and red when im having a flair. I swell though. Sometimes so tight I have no wrinkles in my thumb knuckle and wrist. I guess I have crps. I've been told I have it. I don't think I will ever take my diagnosis as for sure. At least not yet. I'm in denial mode.

Have you gone to a neurologist?

[Russell]

Hi cana,
Sounds like it could very well be CRPS.
One does not need to have every symptom to be raided by this monster.
While I was reading your post I could relate to a lot of your issues. The tingling and twitching sounds all to familiar to me. I do swell at times but not often. I get very bad seizures too. Almost to the point of a fit. I also get internal vibrations. Especially after a Gabapentin dose (900 mgs. 3 x a day, 2700 mgs. in all). Along with other cocktails.

Jennijojo,
The only good denial is a river. We must realize our condition and meet it head on.
Color changes, swelling, red and blue color variation is all part of it. It's good to be strong but as we all know there's no known cure yet but treatment is the next best thing.
I wish all the best for both of you in this battle...

[happygirlpa]

Hi there! Your message sure sounds like what i experience with this. For me it took several years before i was diagnosed. Eventually a wonderful rheumatologist reviewed my records from various other doctors and was able to put a name on it. Trns out mine stemmed from spinal nerve root injury which occured when i had lumbar surgery. Initially my foot swelled horrifically and turned purple. Searing pain. It has calmed down but my foot swells and turns red when i stand or sit for any length of time. An EMG/NCS test confirmed the nerve damage so i have crps 2. I get buzzing, tingling, twitches,all the time, the feelings were making me crazy like a drippy faucct or constant ticking of a clock. I kept telling myself, this is too weird, and i devrloped anxiety just laying in bed focusing on these strange sensations. Even now 5 years latet, i am accustomed to it, but still they drive me crazy! Gabapentin or lyrica just makes the vibrations stronger so i dont take it. I find it helps not to over tax myself. If i do more than i should the vibrations go crazy esp in my legs. I take cymbalta and the rheumy gave me mucsle relaxers which do help to settle down the vibrations and twitching. Hope this info is helpful to you.

[daylilyfan]

You mentioned you posted before so I did a search and read your other posts here in the RSD forum. I saw that Littlepaw recommended back in March for you to look up the Budapest Criteria. If you did not do that then, please take a few minutes and watch this short video about it.

It should help your confusion about if you have CRPS or not.

The video is on the RSD Association's website and is from one of the doctors that was part of the international group that developed the current "Budapest Criteria" on diagnosing CRPS. Those doctors are a who's who in CRPS research.

I believe this is considered the current gold standard in diagnosing CRPS. The doctors involved in this determined a list of signs and symptoms that you must have to be diagnosed. You need multiple signs and symptoms from the list. If you only have one sign or one symptom - you would not be diagnosed with CRPS.

So much of the info on CRPS/RSD is in medical journals and papers and is hard for me to decipher and understand - but this doctor is good at making the information simple and clear. That was the point of the criteria - to make diagnosing CRPS easier for doctors so people with it would get correct diagnosis earlier so that they would get treatment earlier.

https://www.youtube.com/watch?v=7GI7cRL5lmw

[LIT LOVE]

Both swelling and temp regulation issues might need to be measured to determine if they exist.

[Auntie Audrey]

“ What can I do to help myself heal? I take mg, vitamin d, vitamin c, omega 3 and gabapentin. Nothing is helping. I am literally at the end of my rope...”

Hello Canagirl, I am also supplementing with similar vitamins/minerals, specifically B12, D3, and magnesium. So far I’ve noticed an improvement in spasticity in my legs, and my muscles seem to be a bit stronger which enables me to walk a little further unaided than I was able to a month ago.

From what I’ve been reading, progress is slow if you’ve been deficient in B12, D, and/or Mg in the past. Your results will also depend on the formulation and dosage of the supplements you use. Perhaps higher doses would be more effective for you.

There is a wealth of information available on the B12 sticky thread in the PN forum, and on D and Magnesium threads in the vitamins/minerals forum.

I truly believe that the most important thing for you is not to give up! You are a special person and I’ll be praying that your condition will soon improve. Remember the old adage that it’s always darkest before the dawn.