Peripheral Nerve Hyperexcitability (PNH) Community
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This patient support community is for discussions relating to Peripheral Nerve Hyperexcitability (PNH) and the various conditions related to it such as neuromyotonia (NMT), cramp fasciculation syndrome (CFS), benign fasciculation syndrome (BFS), Isaacs syndrome and others.

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I have been dx'ed by my neurologist as having BCFS back in August, however I still keep having other symptoms that my neurologist never has been able to explain as being part of BCFS, such as joint pain, especially in the hands, swelling of my hands, and chronic fatigue.   Does anyone else have this and what does your doctor say it is?

My main daily pain areas are usually in my upper neck/base of the skull, my lower back right below the belt area, and the middle upper part of my back along my spine and shoulder blade tissue areas.

Mark
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215164_tn?1269469840
Hi Mark,

You have probably already been tested for this but the first thing that came to mind was RA  Rheumatoid Arthritis.  Not sure if that would tie in with the BCFS or not.  I have always thought my joint pain was some sort of arthritis and just ignored it and treated with over the counter meds cause both RA and OA run in my family.

Found out recently that my "arthritic pain" is actually neuropathic pain :(

Hope u get this figured out soon.

LG
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Avatar_f_tn
I also have benign fascics and only got cleared from anything more sinister less than a month ago.  I was surprised as I have been having issues with speech, my hands get stiff and I also get some pain.  

The doctor I went to is a specialist in ALS and other neuropathies and he was completely sure that I don't have anything serious.  However, there is a wonderful site for bfs sufferers call "about bfs" (do a search).  People there have had every symptom that I have had and more.  I would suggest that you post a question there, or search their archives.  I have also heard that they think that Fibromyalgia is just a more severe bcfs and I know that fatigue and pain are major symptoms.  This is also a benign condition.

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Avatar_m_tn
Yes, I was tested for RA and it came up negative, however my doctor said that early onset of it sometimes doesn't show up in the blood draw.  I was also tested for Lyme disease too; it was negative as well.  Since then I am leaning more towards Fibromyalgia, but I try not to "self diagnose" too much.  It's hard not to sometimes though, especially when you are it pain almost every day!
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Avatar_f_tn
Hi Mark,

Goodluck with your search to find out what is causing your problems.  Have you ever been tested for Lupus as this can manifest it self in many different ways with join pain being often a  major symptom.  

Also it won't hurt to get a second opinion, sometimes a new Dr takes a fresh and different approach.

Cheers,
Udkas.
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Avatar_m_tn
No, as a matter of fact I don't think that they did test me for Lupus.  I'll have to lookup it's symptoms, because I don't know anything about Lupus.

I have been thinking about seeing another doctor for a second opinion... good thinking!

Mark
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Avatar_f_tn
Hi Mark,
well it is just a thought.  Sorry I meant to type joint pain.  I have a lot of nerve pain, burning and sensory problems (Could write a book on my symptoms) but first neuro thought I had MS, then changed his mind when brain MRI was clear but still thought neurological, second neuro (new opinion) believes I have Transverse Myelitis that is now reoccuring  and now that it is re occuring he is thinking I might have lupus, so lupus I think as first illness and the TM as secondary but I am having more tests next week, another MRI with gadolinium, bloodwork and lumbar puncture, so hopefully I might have some answers. Lupus can attack different areas of the body but usually most people get joint pain with it.  Diagnosis is by bloodtest and meeting certain criteria but if you google it you should get some info.

Good luck with your search.

Cheers, Udkas.

Second opinions never hurt.

Goodluck
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737976_tn?1232122565
Mark,

Have you been had a nerve conduction test?  That was the test that the neuromuscular specialist used to confirm my BCFS.  Basically, they sent an electrical shock to a nerve that caused my affected muscles to contract.  Then, they measured how long the nerve continued to send the signal to my muscles.  On a normal person, the signal should stop immediately, but mine continued on for several seconds.  

I am not in the medical field, so I probably didn't relate this whole procedure accurately.  However, once this test confirmed my diagnosis, the specialist gave me a prescription for an anticonvulsive, wished me luck, and sent me on my way.

Scott69
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Avatar_m_tn
Yes, it is called an EMG.  I had one, that's when I was diagnosed with BCFS as well.
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752995_tn?1233644512
Hi

I am wondering if what my nero diagnosed four years ago as benign cramping syndrome is another name for BCFS.

I had the nerve test, and because of family history, had EKG of my brain.  my dr didn't thing it was necessary for MRI, since I been having pains since middle school, and I was 28 when he did the test.  In fact my whole life I had other people give me one excuse or another, "it just growing pains", to this day I don't know what a real growing pain feels like.  When I got older and was still having them, it was because I had a unhealthy diet.  If it didn't decide to act up in front of the dr I might never have gotten diagnosed.

I haven't been able to find anything on the net about Benign Cramping Syndrome and only a few days ago google finally gave me list of sites about  BCFS, though it not like I been checking it daily or anything.  The more I read about the more it sounds like what I have, my nero told me take more calcium, when I still was getting pain, my family dr said to add magnesium.  I was wondering if it had more do with allergies because it got worse during allergy season, but then I read your post, Mark, about how benadryl makes it worse (of course it has to be the one allergy meds I use) and four years ago when it was at it worse, I was talking over the counter sleeping pills, which uses the same ingredients as benadryl.

Anyway if you know if it the same thing that would be nice, but I probably end up asking my family dr, when I go in next month for refill on some of my allergy meds. (not that I don't trust you, but it always nice to get a second opinion)
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Avatar_f_tn
Can anyone tell me if the EMG is painful and how dangerous it can be.  I am scheduled for this test and had no idea it was what it says it is.  Shouldn't they do NCV test at the same time?  Thanks
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Avatar_m_tn
It sounds like you could have BCFS.  Do you get the muscle twitching too?  For me, the twitching can get a little irritating at times, but it is the cramping that is the worst part; and the thing is that you never know where or what will set the cramping off.  
Tonight I gave my wife a big hug, squeezing around her back because she wanted some of her vertebrae in her mid back to "pop" and release the tension that had built up after a long day's worth of work.  Immediately after I did that, my pectoral chest muscles cramped up on me, it was terrible.  I started to get nauseous for a minute or so due to the cramping.  I had to rub the general area to make the cramping subside.  This is a perfect example of how unique and random it's symptoms can be...

Hang in there!,

Mark
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Avatar_m_tn
The EMG is not bad at all.  The needles that they used aren't even placed that deep into your tissue; on mine I couldn't even tell where they had been placed once the test was over.  If I remember correctly, the whole procedure took less that 30 minutes to complete.  It's a little weird when they apply a small current to the site, which causes the muscle to involuntarily contract, but they are doing it for a reason: to see the signal results that occur after the current stops.  It's just an odd sensation, not painful...

When is your EMG scheduled to take place?  Keep us posted on your results,

Mark
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Avatar_f_tn
Hi Mark!  Thank you for your response.  Your info was very helpful and has helped to ease my mind about this test.  My EMG is scheduled for the 9th of March.  I should have had this test many years ago.  Don't know why they didn't schedule it for me.  I think I may ask for some kind of biopsy next.  Have you ever had a biopsy of anything?  I am wondering about that procedure as well.  Hey, can you describe your symptoms in a little bit further detail.  You have alot of twitching in all parts of your body...right?  What else?  Have you ever had MRI's of your complete spine?  If not , you should!!

Mercy
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Avatar_m_tn
I also have GERD, so during one of my annual GI scopes, my GI doctor took a small biopsy of my esophogus to make sure that the tissue with reflux damage was benign, but they totally put you under sedation during a endoscopy, so I don't remember a thing about it.

My symptoms, huh?  I originally fatigue (although not so much anymore now that I'm taking meds), I have exercise intolerance, muscle twitching and muscle spasms daily, muscle cramps (they used to wake me up in the middle of the night in random places before put on meds).  These cramps are similar to getting a charley horse, but in my neck, bicep, traps, calves, or hip/thigh.  That muscle would be sore or "pulled" feeling all the next day.  I also have arthritic symptoms in both hands, feet joints, and knees.  I also will sometimes get a jabbing or stinging sensation in various muscular regions at times, feels like a flea bite I guess you could say.  Nothing is really biting me, its just the nerves sending false signals to my brain.

As far as MRI's, I've had them on my brain (with contrast) when they were trying to rule out MS, and then I just had 2 MRIs performed (without contrast) on my back because I was going back in to have a nerve block procedure done a couple of weeks ago.  Maybe I should get copies of them sent to my neurologist too?

Mark
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681148_tn?1285160820
Wow, it sounds like you have many of the same symptoms that I have.  I am wondering if the nerve pain you get behind your pecs is predominantly on the left side of your upper chest.  I get some really bad nerve pain everywhere, and not just my extremities.  The reason I'm asking about the left side in particular is because I have a theory about the nerve pain that I'm feeling in that region that also involves the GERD and some refracted pain that goes just to the left side of the sternum.  I've been told that a lot of that is from refracted pain from the GERD.  But, since I have nerve pain in so many places throughout my whole body, I'm wondering if I am getting nerve pain, as well as the refracted pain, because that is already a vulnerable area.  I get nerve pain on the other side of my chest, too, but I get more pain on the left side than I do the right side.  Today, the nerve pain is especially bad.

Neurontin does help, though.  I have a tendency to avoid taking my meds when I have a stomach virus, so I didn't take any today, but I am going to take it again in a few minutes and see if that will make even a small amount of difference.  I think even this low dose of Neurontin makes a little bit of difference in how much nerve pain I feel, so now I am considering asking for a gradual increase of the dose to see if it will make a difference.

I have learned that one doesn't have to have positive rheumatoid factors to have these illnesses.  I'm still in limbo for a diagnosis, but at least I'm finally seeing a neurologist.  I have chronic migraines, which is how I got the referral.  It turns out that the neurologist might be able to figure this baffling array of symptoms that I have.  I have learned that FMS has nearly identical symptoms as MS.  This is important to me, because I had an uncle die from MS when I was just a little girl that I never got a chance to know.  I have learned on the CFS/FMS forum that getting diagnosed with MS can take just as long as it does for CFS/FMS, so now I have to keep struggling to get the right kind of treatment until there is a a definitive diagnosis.  I'm glad I finally got a neurologist, though, because it turns out that this is the right kind of doctor for migraines.

I also get the pain in my shins that feels like what I remember growing pains to be like when I was just a kid.  Well, now I know that kids shouldn't be dismissed when they complain about growing pains, like I was, since this feels the same as when I was just a little kid having growing pains.  Even if there isn't a lot that adults can do for little kids and growing pains, other than maybe rubbing their legs and giving them children's strength Tylenol, and mostly taking them seriously.  The pain I'm having these days feels like what I remember as a kid, and sometimes I come close to falling down.  I fell a lot when I was walking on flat pavement as a kid, so my knees are still really scarred up.  I still have a really bad scar from falling on a metal floor divider in my uncle's trailer when I was a kid, too.  

What suggestions do you have for when I see my neurologist the next time, which will be in April?
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Avatar_f_tn
Hey Mark,
I hope your feeling better. I found this site by typing in my symptoms. I am currently undiagnosed and feeling miserable. I have been to every doctor under the sun.  I am currently experiencing burning skin, burning tongue, muscle twitches, muscle spasm, muscle cramping, muscle fatigue and episodes of itching skin along with feelings of electrical buzzing under my skin. All of these thing migrate around my body on a daily basis. I never have any relief.  All the meds I have tried Neurontin, Gabapentin, Topamax, Cymbalta, Lexapro, Plaqinil, and Lyrica do very little. I have been seen by the top neurologist at John Hopkins and they can't figure me out. All of my test that I have had done have come back normal. I have had EEG, EMG, Lumbar Puncture, MRI Brain, C-Spine,
Thyroid, Diabetes, extensive bloodwork etc..... I could go on and on.  I am currently seeing a new RA docter to just get another opinon.  Maybe he can figure something out.  I saw another docter at his firm and he told me I had Fibromyalgia, but my neurologist and my new RA  say no.  Who knows, he took 18 viles of blood and I am waiting to hear the results of that.  In the meantime, my docter at John Hopkins has sent my case to NIH Undiagnosed department.  The only problem with that is that have to accept your case and they only take 100 per year. Wish me luck on that one. If you have any suggestions or questions. Let me know.  Sorry for the lengthy post! To all who suffer with these weird undiagonosed syndromes. I wish for you a life of pain free days to come!!
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Avatar_m_tn
i have been diaognosed with cramp fasiculation syndrome caused by peripheral nerve hyperexcitabilty and take gabapentin 4 x 100mg daily and 1 x amytriptiline at night, this seems to have calmed things down a bit and can now cope most of the time.  my specialist recommended the mix of two items as it tends to work better than one on its own.  i also have degenerative disc disease in my back and have steroid injections in my spine 2-3 times a year.  i have hip and knee pain which have been tested for and have now been put down to peripheral nerve pain, lupus negative but my blood has been tested and have a positive anti cardio lipin antibody which apparantly puts me at risk of blood clotting and have to be tested once a year to keep an eye on it for lupus possibly developing.  it has taken four years to get to the bottom of everything and on the right treatement and have now started with upper back pain between my shoulder blades.  i am waiting to go for mri to see if degenerative disc disease, but could again be releated to nerve problem, it just seems to be one thing after another, i am fifty and feel about seventy.  i work full time and struggle from getting up in a morning to going to bed at night.  i take co codamol 30mg/500 daily, use a tens machine, hot bath and lie in bed with 3-4 pillows under my feet to get some relief.  its a daily battle, im constantly tired even though i now manage to sleep 10 hours a night i wake up and after an hour am tired again, can't excercise for longer than 5 mins before exhausted but have learnt to adjust my lifestyle and do housework a bit at a time etc.  i am lucky my partner has ms so feel lucky that he understands my pain/tiredness etc.  the worst bit is the cramping and buzzing sensations in my groin (use your imagination)!!!!
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