Skin and muscle pain

Hi,

 I am new to this forum and am seeking out some help. My problem started about 8 years ago with a tingling sensation in my right calf. It slowly progressed to the rest of my body and intensified to the point where it feels like the worst sunburn I have ever had. To compound my problem I get very intense shooting pains in my muscles that are short (it's not all of the time like the pain I feel on my skin) but very painful shots, it may happen 3 or 4 times or as many as 10 to 15 times. Both of these pains migrate all over my body sometimes making it too painful to even wear clothing.

 I have had c scans, mri's every blood test known to mankind and nothing shows up as being abnormal. I do go asymptomatic from time to time and it lasts maybe 3 days which lead to yet another frustrating situation. I was booked to go in for a test with a Neurologist where they hooked me up to this machine that monitors the electrical pulses given off by your nervous system. Of course 2 days before the test I had absolutely no symptoms and it lasted for 6 days. Those 6 days were wonderful in light of the fact that I was pain free but of course the tests showed no abnormal behavior much to my disappointment.

 I am taking Gabapentin (the generic form of Neurontin) and it does help to a degree. The Neurologist asked me to try going for a few days without it and my skin goes all prickly so I know it's doing something. It also worsens when I am tired.

 What I am hoping is that maybe someone else has experienced similar symptoms that may have had tests done and discovered what was ailing them. Maybe there is a condition that the specialists have missed however I doubt it given the number of tests that I have had done. If anyone can help I would be forever indebted to them.

Don

Don, I hope someone here can help you.  By the way, welcome to the board (but sorry we all have to be here).  My carpal tunnel syndrome presented itself in a very similar way - tingling sensation and extreme burning, to the point of tears.  I get the same feeling (including the sunburn feeling) in the thoracic region of my back.  This has gone on for about five years off/on.  about last year, I started getting it in my feet, too (tarsal tunnel syndrome? I think that's what my doc said).  I've been on/off the neurontin, topamax, etc.  The thing that works best for me, now, is doing short bursts of steroids.  When I first feel it coming on, I do about five days of prednisone (about 40mg/day).  Usually, it really helps. Anyway, I'm sorry that your symptoms went away right as you were to have testing done.  Never fails, does it? But keep searching for an answer...and hopefully someone here can help you out. --Tina

Tina!
I still have those sensations that you speak of. They did get a lot better.
Maybe, just maybe, part of my problem was/is Carpel Tunel Syndrome.
I always thought that Carpel Tunel was a mild ache -no big thing. The
common cold of diseases with long names. From what you have to say,
Carpel Tunel is a big deal. I am enlightened. pn
PS. Tina, didn't prescribed Dilaudid help you?

Don,
I am SO sorry that happened to you. The problem may have to be
approached from another angle. (I dunno what) You probably could manage
another MRI, IF you would pay for it. I doubt that your insurance would
be willing to pay.
I got a BAD MRI one time. It was a clunky old closed machine. I was terrified
in it because I had been used to modern technology. This particular MRI was at
a fancy-pants clinic down in Oprah's California home. I thought I'd get the best -- No
way. (The Dr. did not prescribe anti-anxiety meds) After that test, I couldn't get
another one for a year.
I've come to the conclusion that I will never have another MRI unless I'm half-way considering
surgery. pn

 Could it be nerve damage? I have nerve damage in my right thigh. It kind of tingles,hurts,itches all at the same time.I have never felt anything like it befor its real strange.

Hey I have a lot of nerve damage AND fibromyalgia..... and sometimes it can be difficult to tell the two apart. I was originally on Gabapentin as well, and I had zero relief from it. My PS dr bumped me up to Lyrica 100 mg xs a day (which takes a while to work up to- thats really strong) and cymbalta 60 mg 2xs a day. I just started the cymbalta about 2 months ago and can tell a huge difference with the fibro. It took my drs months to diagnose the fibro. My RA level was high as well which threw the scent. :) But pretty much after I began the Lyrica (I mean the 2nd dosage) the burning/tingles up the leg/feet/arms was just a small tingle. Kind of like a tens unit. Most drs carry Lyrica as samples, ask for those first cuz its expensive. I am on about 10 meds but when I don't take my Lyrica I can tell. I lie up all night wanting to cut my off from the creepy crawly tingly burning feelings! Hopefully this is a start. Someone on here actually thought I had fibro & I said something to my drs could that be it???? I know it takes a long time usually to get the right meds & dosages.... & by then your tolerance is built up. I will say the Lyrica made me exhausted- at first- maybe a week or two, but I am fine & have been on it about 2 years. Its great stuff. Hope this helps you some! If this dosen't work- I tried this & had no luck- an old wives tale is to put a bar of soap at the end of your bed to help with it. I think it may help people with rls, but nerve damage may not have any luck. I know my mother & grandmother both suffer from rls symptoms & they both said it helped! Good Luck! You will love everyone here, a lot of people here have been there & have great advice. Good luck with your appt!!!

Thanks very much for the advise kttn251977, I am supposed to go to my GP next week and I will ask him about the meds and see if there is a difference in how my skin and muscles feel. Trust me, I know all about wanting to cut off legs and arms, I also get it on my chest and stomach.

Thanks again for the words of encouragement kttn251977, I don't tell family members anything about my medical issues anymore because it seems as though they are tired of hearing about it. Frankly I am tired of living with it.

I can totally relate to your situation, if I wasn't talking Gabapentin I know it would be worse but I am going to try kttn251977's suggestion and ask my Doc about Lyrica.

I absolutely can relate to reading through all of these posts......nerve issues, fibro, family tired of hearing about it, ME being tired of being sick.... the list goes on.  I, too, went through the "why me's?"....I got sick right as I turned 30 and was pregnant with my last baby...(five years ago).  My three younger kids don't even remember having a "healthy" mom.  But life's taught me a lot in the last few years so I TRY to focus on the blessings; but I'm human and have my share of rough days... Pamela, Yep...I've never known pain as bad as what my hands (and back) have caused.  After six children (all via c-section) it takes a lot to break me...and I've been delirious with the burning/nerve mis-firings in my hands.  After seeing two doctors, they both said I had so much damage to my hands that surgery would only minimally help.  I do the burst of prednisone now, right when I feel the burning coming on...maybe once every couple of months.  But I always have numbness, tingling, hands fall asleep, etc. Re: Dilaudid - IV Dilaudid is about the only thing that gets my pain level down.  My tolerance to all of the oral meds is absurd.  Actually, out of anything, the muscle relaxer works the best for me...  So, I'm a bad one to ask about oral meds.  BUT, I know oral dilaudid has helped many people.  I'm just praying I can work up the nerve to try the pump situation again... Kttn251977 - I could relate to a lot of what you said -- especially about the sleep issues; and the thoughts about dealing with chronic pain... I'm sorry we all have to deal with this; but it DOES help to hear from those that understand.  --Tina

Kttn, Tina,

 I read your posts and saw myself in some of your words.the "why me's" and I know family is tired of me being "sick and tired". BUT thanks to finding this Forum, I see I am not alone and I see I can relate to all of you and you can relate to my pain as well. I will try to see that there is always someone worse off than me. I kept asking myself "How much pain is God going to give me?" and why I couldn't find relief (pain meds)without feeling guilty, or I felt like a hypochondriac. (sp) I felt uncomfortable yesterday asking the Rheumatoligist for pain meds, but believe it or not HE understood, and said "No one should be in this much pain" and prescribed the vicadin. My qaulity of life is such, that it is better using the pain meds to control pain, than to be so miserable I want to kill myself. So if people don't understand, that don't have our pain, so be it, I would not wish this pain on even my worst enemy.

I want to know how, or which doc I approach about the pump? and who prescribes the anxiety meds? the Rheumy? I can not take Oxycontin (I get dillusional), and have such a high tolerence to most pain meds as well. Dilaidid worked great for me in the hospital. but who will  prescribe that out of the hospital as well?

I too have a lot of nerve damage and have such a burning sensation on top of my feet.  my hands and arms fall asleep alot too. I really never even mentioned it to the Dr. as I already had so many other complaints, aches and pains.I was embarrassed to "gripe" about something else. God I am glad to know I am not alone with my pain. I can't tell you how good it is to be able to speak to people who UNDERSTAND!

Thanks for all the support you give everyone here!

Patty

Trust me Patty, I have had all of the same thoughts as you. I can fully understand why people end their lives because they can't take the pain anymore. I would never consider it myself because of the emotional pain it would put my daughters through.

Don

moondancer- be careful on vicodin. my dr told me it can hurt your stomache, its meant to be a short term pain med. as far as the pain pumps go, from what i understand they have a tet version for a week or two, if it works they will install it for you. I don't know about a neurologist, i don't have one. i see a pain specialist, i know they can do them. but several people on here have one, maybe make a post? i know that i have had zero luck with morphine & patches. as far as diluadid (sp) goes, i LOVE that stuff. but here is how my dr put it to me...... i have a terribly high tolerance to pain meds. i have had the legal maximum dosage of dilaudid (and phenrgan- my fave cocktail) & walked like it was nothing. it work though for a few hours. i LOVE it. i love the whoosh of pain leave my toes. who dosen't? well, anyhow, he explained that he would give prescribe the pill form if i wanted, but to remember i would not have a lot of options if i wanted something strong for pain when i am REALLY hurting. have you tried oxy or ms contin? they work pretty well for me. i have been off & on a lot. it takes awhile to get the right mix, my drs even said sometimes it takes a few years. i am the same way, my muscle relaxers sometimes help more... an empty stomache.... full glass of water.... i know what you mean. i do a lot of research online too so i can ask about stuff. there is a lollipop with morphine thats supposed to be pretty good. my aunt had cancer & had one that swiches in your mouth right away. just tell your dr that its not working. i mean i will never be pain free, but there is no need that i shouldn't be able to have some relief!
falcon- hang in there. have you considered talking to a shrink? my pain dr advised to talk to one because chronic pain is linked to depression. i live in a big city that actually has shrinks who specialize in that field. i went a few times, but it really helped. i went through a lot of this sucks, im so young, poor me, i am in pain, not fair... plus a few more. watching my tummy/face/feet/hands swell. losing a lot of hair. i know what you mean. but ask one of your drs for something for depression/anxiety. they even help with the pain, i am not kidding it will make a huge difference. i went down about 2 notches on the pain scale with cymbalta. and you need to talk to someone. and tell your loved ones how much it hurts you when they say those kinds of things. let them know you already feel bad physically & mentally.... we are all behind you here. we will always listen. believe me, you will feel a lot better once you talk to someone. (((hugs))) i hope this helps you some. ((double hugs))

Which bridge to cross? Which bridge to Burn? and .... and .... Which bridge to jump off of? (With a parachute
of course)

I am missing my grandaughter's Halloween party cuz my back hurts and thus the little word play on Moondancers quote.

pn

Conan O'brians 3-year-old son was looking at the costume book with his dad. The little kid picked out the costume
of the UPS guy. Dad said "Don't you want to be something scary?" The boy didn't respond to this. The costume
came and the boy did a dress rehersal. Conan saw him coming down the hall. The little boy was making
clawing motions with his hands and growling real deep and loud.



I'll have my party right here with y'all.

Post Edited (Pamela Neckpain) : 10/31/2008 6:29:07 PM (GMT-6)