Hello-= was just tentatively diagnosed with peripheral neuropathy yesterday, the cause as yet undertermined as I have several health conditions that might be cause = Crohn's disease, Had Acromegally due to pituitary tumor which was removed and hopefully cured of acromegally (although I need to get MRI and hormones checked again- been 2 years since operation with only one hormone level check-up 1 1/2 year ago - yes, I know, I'm a procrastinator), worked as painter for years inhaling toxic compunds, plus worked with oil paints containing bad stuff liek cadmium and cobalt etc- and also have sleep apnea and low blood sugar-
Are these symptoms typical of peripheral neuropathy? Or might there be soemthign other going on: My forearms and lower calves are the the muscle groups mostly affected, then the neck muscles and a little bit in shoulders, and the least affected muscles are the thighs and bicepts which are only affected when I rerally overdo soemthing like shoveling snow. I get what I would describe as a burning pain akin to lactic acid burning sensation when you push your muscles beyond what they should be, and they start to ache and 'burn'. My calves will tighten up after only an 1/8 of a mile walking or so, and the burning pain will cause me to have to stop and let hte burn subside, then I can go on for a bit more, repeat rest, then walk some more. The tightness begins and doesn't let up until I rest for a good while, and hte muscles will start to cramp when htis happens.
This condition happend gradually over a couple of years, progressively getting worse to where it is constant now- it's caused an extreme excersize intolorance where even climbing a flight of stairs causes pain or on the worst days, even brushing teeth will cause muscle burning/pain in arms and I have to drop my arms to let them rest.
Along with this pain, other symptoms include night sweats, innappropriate full body flushing when even slightly nervous (This grew worse as the muscle pain condition progressed)- cognitive exhaustion (Difficulty thinking, following instructions [Lose track of what's being said] - just general brain fog) (Note, I was always a sharp thinker/reasoner etc- now it's like I'm 90 years old and can't htink striaght.) When I over do it, it will take a couple of days where I'm shaky, weak, neauseus, muscles are really bad until I get back to the normal crappy feeling I usually experience. If I pace myself, I can stay pretty steady- but if something comes up where I have to exhert myself for any length of time, like shovelling snow, or hleping someone move or something, then I get run down very quickly and it takes days to recover.
I also am experiencing temperature regulation problems where I'm cold most of the time, yet I can overheat uncomfortably quickly, and heat and humidity make my muscle ocndition worse. If humidity is really bad, I'll get to a point where I feel like I'm going to pass out because I'm so weak- I have to be in front of an air conditioner to help relieve this, and this was never like me- I always worked outside when I was working, and was always a high energy person and heat/humidity never bothered me before. My thyroid has always checked out fine in the past- so I'm not sure what is causing temperature sensitivity in me. (Just as a footnote, I note that barametric changes seem ot affect my weakness as well- I can usually tell when a front is moving through before it gets here- I know it sounds odd, but perhaps others experience this as well?)
All bloodwork comes back normal- hormone levels checked out in the past (Not sure if the tumor has regrown or not- have ot have htat checked, but even when hormones were normal, the symptoms listed above have persisted)
I guess my questions are threefold 1: Does anyone experience these? 2: Does anyone have an idea of whether there might be somethign else going on besides peripheral neuropathy? If so, what might it be? What should I ask Doc about? Anything that might go along with peripheral neuropathy that I should be aware of? and 3: What meds do you find work for the peripheral neuropathy? I find tramadol works for abotu 5-6 days, then it starts not working very well, and it worsens my restless leg problem and periodic leg movements which have been confirmed with sleep test.
Hey- I am a 39 year mom of three ages 7, 10 and 16. I work in an office at a computer all day. About 3 weeks ago I experienced a burning feeling that started in my neck and ran down and out across my shoulder blades. It has occured several times since then. I don't really have any other symptons other than occasional leg cramps and not able to sleep for more than 4 hours straight at a time. What could this be?
sounds like neurological, perhaps pinched nerve? There are several neurological problems that involve the neck and upper torso or arms. A visit ot a neurologist would be hte best bet, especially if the problem is progressing
I am sorry you have had your condition for 2 years. I have EXACTLY the same symptoms (except primarily in my legs), but only for about 4 months and it's been a mighty long 4 months. I am (was) a fit 49 nine year old mother of teenagers. I am a long time runner and painter (small part time mural and faux finish business and oil paintings by commission). My symptoms started one day last spring...I had attended an all day oil painting workshop (cleaned myself up with paint thinner many times....I am very messy) and then went for a 5 mile run. After about a mile, my legs were burning, but chilled. I finished the run, and shortly after became extremely nauseaus, chilled, basic flulike symptoms. I thought I had heat stroke or something, drank lots of Gatorade. I felt crappy for almost a week, persisent nausea and chills, and a really yucky burning, not normal feeling in my legs. As I began to feel better, I started back running, but continued to experience the burning/chills in my leg muscles and nausea that would linger for a few days. Well, duh, I finally figured out running=bad, but by then even walking, or any type of exertion (tried stationary bike and stair climber) would bring on same symptoms. I also became extremely heat intolerant and hypersensitive to touch during this time. Here's what I've done so far: basic bloodwork...thyroid, B12...normal. MRI of brain and spine....normal. Nerve conduction test....normal. Tried acupuncture....didn't help. Currently, I'm giving a chiropractor a try...what the heck! I see my internist and neurologist this week, I hoping I can get one of them to refer me to a rheumatologist just to rule out any weird autoimmune stuff. I have not used my oil paints for about a week and I am giving up my nightly glass of wine or beer, because I read somewhere that alcohol irritates the nerve endings (or something like that). Personally, I thought it would relax my crazy muscles and nerves that seem to have a life of their own, but I guess not! This is probably not an issue with you since you have Crohn's. Sleep is yet a whole other story, a little tricky when legs are burning and muscles are twitching constantly....I give it a couple of hours, but usually resort to Nyquil or 1/2 of a pill of my very precious stash of Valium! I saw an ad on the internet for a product called BENFOTIAMINE and read all the testimonials. I think I'll give it a try. Again, I am truly sorry for your pain. I am lucky enough not to have to get up every day and earn a living, because I'm not really functioning beyond the very care and feeding of my family. Hope some/any of my story helps.
Hi Lbs- I had the pituitary tumor out two years ago- but have had this burning pain in muscles for 14 years without a diagnosis- I too paint paintings and had to give up the oils, but have discovered the water soluable oils- I also discoverd that you can clean regular oil off brushes with Soft Scrub Citris believe it or not- works wonderful and doesn't have the fumes of Terp. So I'm back painting again :)
Alcohol definately does hurt hte nerves- I get extremely weak the next day and my muscles just burn terrible- worse than usual.
Your symptoms definately sound spot on for neuropathy, I went through all the tests like rheumatology, infectious diseases like lyme, etc and all came out normal. Had I known about peripheral neuropathy back then, I'd have saved myself a lot of unnecesary tests for sure, but I just was unaware of this condition and really spun my heels trying to figure out what could be wrong and what tests to get. don't settle for just one neuorology test if it comes out normal either- because my first neurologist didn't do a thorough test and he stated that there was nothign wrong- so I went for 2 years thinking that my problem must be due to another condition, and had a myriad of useless tests done trying to find out. There are two tests in the neurology test that should be done (My first neurologist only did the one test) one is the NCS and the other is the EMG (or somethign liek that). Also be aware that these tests are sometimes fluky and miss problems- especially if not doen by someone with a lot of expertise- perhaps have hte test again by someone else, and insist on both tests being done- Yeah, they are unpleasant tests, but worth it if they find the cause of your pain.
Yeah- I was really healthy too- very active- almost hyperactive- always worked long hours, and slept very little, but that all came to a halt when I started getting sick, so I definately sympathise with you about losing that drive and energy- it's certainly not an easy thign to accept for sure.
Have you tried Tramadol or Ultram? They are pain relievers, and I find that it is about hte only thing that really works on the actual burning pain, BUT, it only works for a couple of days for me, then it starts losing it's power to overcome the burning pain, and it causes restless legs with me terrible after about 5 or so days- I can't take it due ot that, but my rerlatives can take it just fine. I've read that it does work for peripheral nerve disease in some people fairly well. I have to take Hydrocodone myself, but it really doesn't work very well on the burning pain- but it helps I guess to relax the muscles just a bit. I do keep some Tramadol on hand and only take it when I've got to go out somewhere where I know I'll be exherting my muscles too much (Like just going shopping for the necesities of life- can't even do that anymore without pain- uggh)
Anyway- you symptoms definately sound like neurological problems, so try to find a doc who will be quite thorough with you with testing- and one who has experience with muscle conditions as well. Your problem may perhaps be a muscle condtion, of which there are quite a few, and you'll need to see a specialist who specializes in these rarer condtions. Hope you feel better soon.
Thanks for the quick reply...I see my neurologist this afternoon and I will definitely discuss the things you mentioned. I also have an appt with a different neurologist next week, so I look forward to getting a second opinion. Thanks for the tip on paints, I was thinking I might give acrylics a try, but I really prefer oils, I had forgotten about the water soluble ones. I used to clean my brushes with DAWN dish soap and that works pretty well, too. I had a few Hydrocodone from a previous running injury left over, and did take those a few times...might have taken the edge off just a bit...hard to say.
Yeah I don't think the Hydrocodone is all that great for hte pain- like you say, it might just take hte edge off, but not much more- I don't really want ot have to go to the more rugged drugs like Oxycodone- but might have to.
Talking Docs into taking the symptoms seriously isn't an easy thing- the docs tend to dismiss complaints by us, thinking we might be exxagerating or something. I once had a Doc tell me after explaining that I get severely run down and it takes me days just to recover back to my general crappy feeling, she said "Well if I don't get enough sleep, I get 'run down' too- everyone gets 'run-down'" I thoguht to myself "Ma'am, you haven't got a clue what it means to be run down and weak" but I was polite and just let hte comment ride- but hte point is, Docs just really haven't a clue how bad things are, and trying to explain it to htem is quite difficult to impress on them that we aren't simply talking about feeling a little 'punky' but we're infact functionally dibilitated.
I wish you well in your appointments, and hope you can make it clear to hte docs that this condition has debilitated you, and that the cause needs to be investigated thoroughly and carefully- Tell the Docs that you beleive the problem is either neurological or physical/muscle problem, and don't ever let docs try to suggest it is all due to depression- I can't tell you how many lazy misundrstanding doctors have tried to pawn anti-depressents off on me because they couldn't figure out what was going on with my muscles- VERY discouraging being dismissed like that.
Did you check out the BENFOTIAMINE website? Most of the testimonials are from diabetics, but one was from a runner (older guy, I believe) who described accurately the same type of burning pain you and I are talking about and he had success with the product. It's sort of my next great hope! I do think I have good doctors (my brother-in-law is a doctor and knows the best guys in town), but when you show up in the neuro office on your own two feet and not in a wheelchair, I think they think you're doing pretty great!
I just quickly read about it and it mentioned it was a precursor for B-1 which, in some neurological cases, patients are deficient in due to malapsorption- I've been taking B-1 myself mainly because of the fact that I have the Crohn's disease as well and figured it couldn't hurt to try it, but so far, not seeing much improvement.
I've tried many many different (and expensive) natural suppliments and vitimins and herbs, all to no avail, but this Benfotiamine seems to be on the right track incase there is a B-1 difficiency- it's at least worth a try I think. I see it helps ot prevent lactic acidosis, and one hting I've said all along is that the burning I feel is exactly like lactic acid build-up- and is as though the body can't get rid of the lactic acid like in an ormal person when excersize is over- so maybe this Benfotiamine will be pretty affective- hopefully anyways. I have to check into it though because it appears it may affect sugar levels, and I have to make sure it doesn't lower blood sugar because I also have low blood sugar
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