Strange, bilateral hand pain - Still undiagnosed

[chadicus7]

Pretty troubling situation here that has been progressing over the course of 5 months.  In April I developed a severe burning on the back of my right hand, in the area of the radial nerve so behind the index and middle fingers.  The pain does not extend into the wrist or into the fingers.. just on the back of the hand.  This goes on for two months and suddenly I start having a severe deep stabbing pain located behind the ring and pinky fingers on the same hand.  The weird thing about this stabbing pain is that it becomes more severe when I ulnar-deviate my hand after periods of inactivity (when I wake up, after sitting motionless watching tv, etc).  It seems like a plantar fasciitis of the hand.. in the area of the superficial ulnar nerve.  After that my left thumb starts to intermittently feel numb/full.  Finally the burning of the right hand is now replicated on the left.

I've see a hand surgeon, a rheumatologist, an MS specialist, a peripheral neurologist, and pain management.  MRIs of the hands come back normal.  MRIs of the brain come back with a tiny inactive lesion, MRIs of the spinal cord come back clean.  Spinal fluid comes back with only 1 band found in the fluid not in the blood.  Doctors at the Cleveland Clinic say no MS or Lyme.  Rheumatologist says no inflammatory arthritis.  EMGs come back completely normal.  Skin biopsies were taken from my wrist and shoulder.. comes back with reduced nerve fiber density but on the shoulder, whereas my problems are hand specific and nothing in my fingertips.. so I don’t quite meet the classic criteria for small fiber neuropathy. All $2-3K worth of bloodwork comes back completely normal for any vitamin deficiencies, Lyme, autoimmune factors, elevated antibodies, lupus, etc.

Pain management thought it could potentially be a form of CRPS – performed a stellate ganglion block with no relief.  They suggested ketamine infusions but if the block did nothing I’m unsure ketamine will do much more.  Acupuncture and physical therapy has done nothing.  

I’m worried that this will continue to progress and not really sure where to turn next. Any help is greatly appreciated and sorry for the long post!

Chad  

[savvy79]

Apologies, I forgot to mention a solution. Either a neurologist or neurosurgeon can do botox nerve shots which are similar to nerve blocks, in the neck or hand. As a 41yr old woman with 3 medical degrees (currently working on my 4th), experience working in hospitals & 20 some odd yrs of suffering from a multitude of health problems, I understand your frustration, especially when there's no answer. There were times when I wished I had cancer or some easily diagnosed disease, just so I could have a definite answer & therefore solution. I've even had some doctors call me a hypochondriac lol Thanks to those doctors & my own self doubt, I wasted 10yrs of my life in bed with chronic mononucleosis!! The pain, fatigue & suffering I went through was unimaginable. My point is this: if you feel deep down that there's something wrong & they're not able to catch it, don't give up. You must become your own doctor.  How? Why?
1. Stop all the appt & doctor visits, unless it's necessary, like dialysis.
2. Do not add new meds or OTC drugs, vit, herbal supplements
3. Do not stop taking any of your usual meds, OTC drugs, etc. etc
4. Keep a very detailed journal. From morning to night, what u eat & when, what pain & where... this is the most important part!!! Write down everything from hour to hour. Do it for 3 months.
5. Research your specific symptoms
6. Research any & all meds u take, herbal or otherwise,,,ingredients,, short & long term effects
7. See a psychiatrist, but not about do not add any new meds, vit, herbs. Let out your frustration but do not mention your health or medical problems!
8. Get as much sleep as possible
9. Create & maintain a support system or group.
10. Last but not least,,, you're ready to see a doctor. SEE A NEW DOCTOR(GP). ONE WHO IS NOT FAMILIAR YOU, YOUR FAMILY, OR ASSOCIATED WITH ANY OTHER DOCTORS YOU MAY HAVE PREVIOUSLY SEEN. START OVER. EASIER SAID THAN DONE, RIGHT? WRONG!! THE YEARS YOU'LL WASTE CHASING YOUR TAIL WILL DISAPPEAR WHEN YOU FINALLY GET YOUR ANSWER & THEREFORE SOLUTION! NOW, IF THE NEW DOCTOR ASKS IF YOU'VE SEEN A DOCTOR FOR THIS IN THE PAST, YOU ARE GOING TO SAY NO! IF THEY ASK ABOUT PAST TESTS, BLOODWORK, MRIS, CATSCANS, ETC ETC. YOU ARE GOING TO SAY NO!! ONE THING I'VE LEARNED THROUGHOUT MY MANY YEARS OF SUFFERING, UNCERTAINTY & ALSO EXPERIENCE WORKING WITH DOCS, IS THAT THEY/DOCS GROUP TOGETHER. DOCTORS ARE LIKE GEESE, FLY IN FLOCKS. THEY DON'T LIKE GIVING ALTERNATIVE DIAGNOSES. THERE ARE OTHERS WHO DISCRIMINATE OVER HEALTH INSURANCE. FOLKS WITH MEDICAID OR MEDICARE ARE OFTEN OVERLOOKED OR SHOVED TO THE SIDE SIMPLY BECAUSE THEIR DOCTOR DOESN'T WANT TO WORK HARD WHILST LOSING MONEY THROUGH INSURANCE. WHEN YOU SEE A NEW DOC, MAKE SURE THEY ARE AN MD, PHD... DO NOT SETTLE FOR A PHYSICIAN'S ASSISTANT, NURSE PRACTITIONER OR ANYONE W/O THEIR MD/PHD.
ALLOW YOUR NEW DOCTOR TO SEND YOU TO OTHER SPECIALISTS. DON'T FORGET TO KEEP ALL PAPERWORK, DIAGNOSIS, BLOODWORK RESULTS, ETC ETC.

Good luck!

[savvy79]

Dear Lord that's a lot of work for nothing. There's a nerve the neck that's responsible for the feeling in the last 3-4 fingers. Sounds like you've somehow injured that nerve & now have neuropathy. If you ever have a problem with those fingers turning white, going completely numb & feeling cold, you have a problem with CIRCULATION.

[btorrao]

I think I responded to you , Sorry I didn't see the whole post.  I have been in serve pain in my hand, cant move a couple of fingers. My pain is 24/7 and its been this way now for 3 years. The Dr. still dont know what to do.  
Dr. tried a spinal stimulator.  No relief.  T
Then we did one at the Medial nerve in my arm where my pain is.  I got about 50% relief.  

[Sara_MHModerator]

Hello btorrao.  That sounds so difficult. Please continue to work with your doctor.  I am glad you at least got 50% relief.  But I'm sure you are still suffering.  I am sure all of these have been looked into but in case they have not, here is some basic info on causes of hand pain.  https://www.healthline.com/health/hand-pain Let us know how you are doing.  

[btorrao]

Hi Sara. No the stimulator test gave me 50% relief. Then Dr. decided to place 2 in to catch the Ulna nerve and the Medial nerve that were damage, It created so much pain, excess of the wires and different Dr put the perm. one in than Dr. that put in the trial. Had to be removed.
We, me still have no idea of what is really wrong. . Dr. said my surgery part went fine but it was the tourniquet is what did the damage.  It was place at the shoulder part it went around armpit. I still say besides the Nerve, damage to my index and middle finger they do not function. They cant bend that's the Media nerve, then pinky and half of ring finger worked but burn and tingles like i am be shocked on a low level but I feel extreme tingle and burning.  Sent to different Dr. and each would tell me I can not do anything for you so we will send you to Dr. XX then that Dr. XX would say the same thing.  saw  6 Dr. each said the same thing. Never touched me or even examined me.  Lost all confidence in Drs.