fibromyalgia numbness and tingling

[kwag]

Hi. Thank you for taking my question.  I am 38 yo female.  I have been very active all of my life.  I jogged (til 1999) 2-6miles a day (most everyday), and I attended exercise classes about 3 times a week.  I felt good.  In 1999, my health went down.  I have always (since I can remember) had muslce twitches.  In 99 I began to have very sore and knotted areas in my muscles.  I was told by an ortho that I probably had fibro.  I did no testing because I could still function in normal life but I had to stop jogging because of severe pain on my inner ankles (post-tibial tendonitis).  My right nevicular bone fractured and it feels better(not treated for the fx).  My left one is still very painful but not all the time.  I now have more S/S of fibro:  some fatigue, most every tener spot, IBS (dx as Chronn's in 2000), dry eyes, weird skin sensations and numbness and tingling in the bottom of my feet.  That brings me to now.  The numbness and weird tingling is trying to drive me crazy.  It came on my left foot, then leg and sometimes right foot.  Then it showed up on my left arm and the left side of my face 2 1/2 months ago. My GP ordered and MRI with and without:normal.  Did labs of CBC, CHEM 7, thyroid, lupus , not sure what else: all normal.  I saw a neuro last week.  Did exam:normal.  Says does not look like MS or other problem and to come back if worse or lose fx.  So, What can I do to relieve this numbness?  I do stretches(yoga) just about every morning and some pilates for strength.  I take whole food supplements, no caffiene, very little sugar. HELP....KARMEN

[CCF-Neuro-M.D.-CS]

There is no particular treatment for numbness. However, if there is a painful quality to the sensation then a trial of a neuropathic pain medication would be reasonable. Some of the more common drugs to try include Neurontin (gabapentin) and Elavil (amitryptiline). Good luck.

[kwag]

Need to add:  the MRI was of my brain...

[graham]

Hi Karmen, Your symptoms are very similar to those caused by vitamin b12 deficiency.  The fact that you have already been diagnosed with Chronn's disease would make this even more suspect as deficiency can be one of the side effects of Chronn's.

Ask your doctor if he has tested your b12 level and don't accept that it is "normal" without knowing the actual result.  Many people have suffered neurological damage because some doctors are still unaware of the levels at which serum b12 becomes suspicious.

If you are in the US, the bottom of normal is probably about 200pg/ml and some doctors think anything above that is ok unless you have other hematological changes, such as anaemia or megablastic (enlarged) blood cells. There are many medical reports from specialists in the field that totally disagree with this.

If your tests are anywhere in the 200's area, even slightly higher, then with unexplained neurological symptoms you should also have your methylmalonic acid and homocysteine levels checked.

Hope this might help
Graham

[kwag]

to Graham, I was taking a B-100 everyday and I had stopped about 4-5 months ago to do a detox program.  I will start it back up again.  Thanks for the reminder!!!

[graham]

Karmen, before you start taking the b-100 supplement I would still see your doctor and get your levels checked. The problem may be that you are not absorbing vitamins because of your Chronn's or other stomach problems.

It might be worthwhile not starting until you have had the tests carried out. If you are having nuerological symptoms, and if b12 deficiency is part of your problem, you may have to have b12 injections or very high doses (1000-5000mcg) of oral b12.  Methylcobalamin  seems to be the form of b12 that many think is best.

I have had similar problems to your own and quite a fight with the medical profession in the UK where accepatable levels are lower than elsewhere (150-900 pg/ml). My b12 levels eventually became deficient as did my folate. The fact that my levels were always dropping was not thought important as I was within the acceptable lab levels and at that time I had no other hematological changes.  

I hope you get to the bottom of your problem. It would be nice to know how you get on.

Best of luck
Graham  

[kwag]

to Graham, how are your symptoms now?  Is B-12 and folate all that you needed?  Did you have a poor diet?  Why were your levels so low?

[graham]

Hi Karmen, well I'm certainly not out of the woods yet but at least people are realising what has been going wrong with my health and as it happens I see my GP tomorrow to discuss treatment.

To cut a long story short, my health had always been pretty good with the exception of stomach/bowel discomfort and swelling mid 90's which was suspected of being Chronn's but examination simply revealed severe inflamation (inflammation) in the duodenum and ileum.

About five years ago I had slight tingling in my lower legs, and  occasionally my arms. I had also not felt run down and slightly light headed. I was scared that I was developing MS, my GP and the neurologist I was sent to thought that it probably was no more than stress.

To fast forward five years, I have burning and painful tingling in both legs and arms, muscle weakness, tremor in fingers, occasional blurred and at times double vision (very slight), tinnitus and last year hearing tests showed distinct hearing loss. I also still have stomach/bowel discomfort. My b12 level was 289pg/ml and my folate  9.8ng/ml in 98. I was continually told my tests were within normal range but what was not mentioned, or noticed, was that my results continually fell. Over the five years both fell constantly, my folate ending up at 2.8 (approx 70%) and my b12 by over 40%.

I have recently had a colonoscopy which also shows that I have diveritular disease in my bowel.

The stomach/bowel problems have been there for nigh on ten years and I don't think there is much doubt that my b12 problem and subsequent neurological problems have emanated from this.

I do not want to see anyone else going through this, and although I cannot say this is definately a problem you have, I would urge you to get properly tested now.

Good luck
Graham

[Spring-02]

These symptoms of numbness, tingling, stiffness etc. also seem to fall into a lot of other neurological disorders.  I convinced my doctor to give me oral B12 injections even though they said my results were normal.  My grandfather and two aunts had Pernicious Anemia so I figured if the B12 injections wouldn't harm me, I had nothing to lose.  My symptoms started in the fall of 2001 with foot drop.  The arch on my left foot is now higher then my right one and I am constantly aware of the pain, tenderness and stiffness in my four extremities.  My MRI in 2002 was normal as were EMG's to my left foot and right arm.  It feels like somebody is sticking toothpicks under my finger nails. My leg feels numb, stiff and cold in the daytime and at night it turns to a burning type of pain.  My right foot is normal but the cramping pain that first affected my left foot is now starting in my right one.  I have lots of allergies, had Bell's Palsey in my late 30's and a history of neuralgia like pins and needles pain.  It is so frustrating not to have a label or explanation for these symptoms which have severely affected my lifestyle.  I go to the pool and joint works exercises as sponsored by the Arthritis Society twice a week and also go to fitness classes three times a week.  Althought the exercises help, the symptoms still persist.  My speech is also affected with slurring and stuttering and my nervous system is hyperactive making it very embarrassing in public when I scream so loud at any sudden noise or sudden movements.  I have hyperactive knee reflexes and my massage therapist tells me she never saw such tight legs and arms.  My neuro couldn't comment on my tight legs as he said I wouldn't relax enough for him to make a correct commnent.  When I wake up in the morning both my hands and arms are numb, although I don't sleep on them.  Even if I am resting on the couch I will get twitches or jerks and see my legs, arms or fingers move suddenly on their own.  I am no further ahead now then I was when all these weird symptoms started but I am trying my best to maintain functionablity and to stay flexible. If I miss my exercises, I stiffen up and can barely shuffle down the hall.   My balance and coordination in affected as well. I can do armcurls with 15 pound weights yet can't open a candy wrapper or a coffee creamer becasue of the numbness.  There must be an explantion to why so many of us suffer with these symptoms.  Fibro may be the name they call it but it may also be because it doesn't fit any other disorder.  I have been told I don't have Fibromylgia (fibromyalgia), RA, brain tumour etc.  At first they suspected MS or a leson on my upper motor neuron but the MRI was clean.  My mother died of a brain hemmorhage at age 48 and there is MS in her aunts and cousins.  I am 57 and was in menopause when all these symptoms started. My younger brother also has leg problems and has to wear an AFO splint.  Two neuros suspected he may have Charcot Marie Tooth but the blood results were inconclusive.  There is a history of leg problems in my father's side of the family.  He had terrible leg ulcers and his father died from a diabetic coma and used to put his feet in the snowbanks to get relief from the burning pain.  I don't have diabetes, high blood pressure, heart trouble or any organic diseases to explain these symptoms.  I had always been a very active, athletic person until the foot and leg problems caused so much mobility problems.  I can't even look at the treadmill at the gym or an escalator or anything that moves quickly as it makes me dizzy.

I hope that people who receive an explanation or diagnosis for similar symptoms will share it with the board.

Good luck,
The Canadian

[kwag]

to Graham, thanks for your advice.  I hope you have improved over all this time.  Some days I feel pretty good and others, lousy.  I have determined to concentrate on good things like the Bible says to in Phillipians.  Today, I have had more numbness or whatever you want to call it (I have pretty good feeling in my extremeties but they feel dull or sl tingly)  and my neck is really tight.  I didn't get to stretch or exercise at all today so I usually feel worse.  I try not to think about how I feel much but many times it's so intrusive that it is impossible to ignore.  I will call my gp tommorrow for a b12 level and folate and a lyme.  Otherwise, I am about to give up on medicine helping me and seek more alternative methods.   I hope the physicians on this site can shed some light on this and tell me some treatments to bring relief.

to the canadian:  thanks for your input.  I'll pray for your health to return also.  All things a possible for God.  May He release you from this trial real soon.

[Spring-02]

Hi Karmen:
Thank you for your kind words and although my life has changed a great deal since this illness, I have also met wonderful people that I wouldn't have otherwise. It pays to look on the positive side of things and faith in God and yourself can help us all on our individual journeys.

I have a stiff neck as well, forgot to mention that in my lengthy message earlier.  However, I had an osteopath treatment and go for monthly massage treatments, which I have found help a lot in that regard.  Just thought I would add that for your information. Sometimes, these alternative health therapies are very beneficial.

All the best,
God Bless.
The Canadian

[Dave-in-Switzerland]

Karmen,

You posted a reply / comment to my own question a few days back - thanks. I just wanted to point out something that might be of use to you, since our problems aren't all that different frokm mine -  although I only mentioned it in passing in my post, I too have had digestive problems for probably 10 years or so.  I was dxed with limited, distal ulcerative colitis in 97. Been taking Asacol ever since, and luckily it's been more or less in remission since '99 or so.

So what Graham had to say about absorption problems may well be a factor in my illness - which as I said is kinda similar to yours. My GP picked up lowish iron back in May, before my current problems started, and lowish rbc MG levels which have not improved despite taking 300 mg daily for 3 months.

So I'm thinking I should make sure someone checks my B12, as G. recommended. And I think maybe you should too - for what it's worth from a non-MD!  I do know that Crohn's messes up absorption more than what I have (which is basically confined to the tail end of the colon). Best of luck to you - I really hope we're both back out there pounding the pavement (or in my case, the trails) by the time the weather warms up again.  dave

[kwag]

Dave, I was on Pentasa for the colon for about 3 months.  then I began to eat better, well, not just better but totally different.  That helped my GI tract tremendously.  I cut out all pop and as much sugar as I can.  My colon feels pretty good now and I am not on any Rx drugs at this time (thank God).  If I eat pizza or something else bad, I feel it so I just have to fight that temptation. I took a B-100 complex today as I have the past few days and I did yoga and pilates exercises and I prayed for relief and I had much relief from the numbness today.  It was so mild.  There has to be a reason that so many suffer from the same S/S.  Anyway, thanks for your comments.  God bless

[graham]

Hi Karmen, just a quick point. I noticed in your reply on 15 Jan that you took your B-100 complex, it's just that if you are arranging for your b12 to be tested through your doctor it might be better to hang off any supplements untill the test is done. I hope your doc does not take too long to arrange this.

Dave, I'm glad you picked up on the info for Karmen, I think it well worthwhile getting your b12 checked.  I noticed that you have been on medication for your colitis.  I'm not aware of the drug you were on, I was on Pentasa for some time, as was Karmen. I have read a number of comments suggesting that certain drugs for inflamatory/ulcerative conditions can also hinder the absorption of vitamins and add to the problem. It could be another pointer that your problems may be malabsorption related.

Good luck to you both
Graham

[kwag]

Hello, hope you're feeling well today.  I got on some more sites and read alot about B-12 (and its different forms).  Lots of people with fibromyalgia report numbness and tingling like feelings and I saw where the B vitamins have helped them.  I used to take alot of vitamins but as I began other programs I limitted what I took so that my clinical picture was more clear.  I also read where most people have a normal blood level of B-12 and folate but the vitamin, whether oral, or sl or inj.  really helped.  I knda figured whether my levels were normal or abnormal, the B-12 couldn't hurt since it's water sol.  Anyhow, I had called my gp about 3 weeks ago for a lyme test and I have never heard back.  Just wanted to get a jump on healing.  I understand your point.  When my gp schedules me, I'll hold off on all my vit. before I go.  I believe you hit the nail on the head with the B-12 problem.  Thanks!!!!!!!

[Quantum1]

Do go ahead with the Neurontin or Elavil if you get the opportunity. For some reason, suppressing neural activity for a while can allow your body to "reset" its response levels so that you can back off the drug and retain the lower level of pain/paresthesia.

Plasticity of the nervous system is the enemy when it is causing problems like pain syndromes, but it can also be your friend in managing them.

I have fibro and have benefited from Neurontin. (In fact, my story is remarkably like yours, Karmen-- I was an athlete, then was felled by severe pain, knotted muscles, tender points, etc. I have continued with stretching and light weight lifting, but it's a real change. The Neurontin really calms the nerve symptoms, and I have been able to reduce the dose over time). Hang in there.

[kwag]

Thanks for the info.  I have met others with fibro that take Elavil at night and they say it helps.  Will look into it.  I hate to hear that you have had to modify your exercise so much.  I keep hoping to run/jog again.  I loved to go on a run and I miss that so much.  The pain on my inside left ankle (dx as post-tibial tendonitis by ortho) is so bad even when I try to walk.  I walk with a stiff ankle to relieve the pain.  I'm considering surgery on it now.  The modifications in my gait are hurting my knee and hip so I have to do something.  Sending healing prayers your way.  God Bless

[Quantum1]

You might consider waiting on the surgery until you try the Elavil or Neurontin for a while (a year, say). Calming the nerve symptoms actually relieves some of the stiffness over a long time. I walked with a very stiff knee for 2 years due to severe tendon/muscle pain that might be like your ankle situation. This made my hip tight also, and began to reshape the bones.

With the Neurontin (1 year), continued exercise, and a healthy diet, I have gradually gained range of motion in that knee and have started to be able to strenthen some of the muscles that weren't used for a long time. I'm not totally symmetric in terms of flexibility and function, but it's a lot better.

Studies have shown that fibro patients have more pain and for longer duration after surgery. It may not be easy to rehabilitate. I had arthroscopic knee surgery before we knew I had fibro, and it was a much bigger deal for me than for most young athletes. In fact, it would have been preferable not to have it.

But you are not me! It might be different for you. I just wanted to share what I know from experience. As for your attainable level of activity... everything with fibro is "until further notice." Maybe, maybe not. Enjoy each day!

[kwag]

Let me ask you this... Did your knee feel really stiff and painful sometimes and then others not so ???  My ankle can feel pretty calm (I still baby it by not using much range of motion with it) and then I sit down or something and go to walk and it hurts so bad that I have to limp to get anywhere.  Then after a period of time(varies), I can walk with only sl. pain.  Sound familiar???  Also the hip on that side is so tight and less flexible.  Did heat help you?  I'm looking into meds.  thanks

[Quantum1]

I would certainly call the pain variable. And while there are activities that are sure to make it worse, at other times it may decide to flare up even without a known stimulus. As you know from experience, at its most severe the pain is a major distraction and hindrance to normal activities.

I find that I feel better when I am warm enough, as opposed to when I am chilled. But extra heat in the form of a heat pack or hot water bottle doesn't seem to help (me, at least).

You may have noticed that regular anti-inflammatories (either over-the-counter or a prescription like Celebrex) don't do much for the severe pain that makes you limp. That's a clue that it isn't true tendonitis, like tennis elbow or something. Medication for nerve pain should be more effective.

I hope whatever treatment you choose works well for you!

[Orphan Annie]

Hi!  I'm wondering if anyone can tell me what they think about the following symptoms:  I have numbness and tingling on my left side--it almost feels like there's plastic wrap on the areas that have numbness.  By this, I mean that there is a bit of feeling but not like the right side.  I get muscle and joint pain and it's awful at times. I get dizzy, tired and just plain clumsy!  I just started a course of prednisone and it's helping the pain and inflammation. The breastbone area seems to get inflammed as well as my neck area and left ribcage. The breastbone even pops!

I'm having a workup from a neurologist and I'm waiting for the results of an MRI.  So far, there aren't any positive tests with the exception of a slightly elevated ANA.  I had gone to a rheumatologist who suspected fibromyalgia and then suspected RA and mentioned that the rheumatoid factor might not always show up elevated on a blood test.  I'm getting really tired of this and want to work to feel much better.  Any ideas what it might be?  Any health tips to manage the symptoms?   Thanks!

[LiaLinda]

Hi, I have FMS as well.  Not only B-vitamins, but "Omega 3's" help with the brain fog / farts.

As for exercise with FMS, I used to bike for an hour and a half every day, and it didn't prevent me from getting fibro, so I have to ask how on earth it's expected to cure me.  Although it's a "point to ponder", I do have to say that exercise is beneficial - we are going to hurt anyway, so may as well have strong muscles that hurt instead of weak ones.

Hope you have a pain-free day!

[kwag]

I believe I know what you're saying about the plastic wrap, I usually describe it as a spider web feeling on the area.  I also had left sided numbness and tingling but I had feeling in the areas.  I also can get really light headed and dizzy easily.  I think it is because my neck muscles are way too tight.  I find that doing stretches really helps and taking high quality whole food vitamins and drinkg lots of good water and of course stress reduction, I read the Bible and pray to God for help.  I meditate on God's word and promises.  This really takes my stress and worry and puts them in God's hands.  He's the only one in control anyway and He is the only one that can restore my health.  I had to realize that and my anxiety went down a lot.  Hope this helps   God bless

[kwag]

Read your comment and I wanted to elaborate on the exercise.  It really helps me to stretch out my extra tight and sore muscles.  It's like my muscles have shortened as the tightened and this makes me stiff.  I believe that this shortening and tightening causes some of these numbness and tingling.  When I get stretched, these symptoms actually decrease and sometimes are gone.  I have to work to maintain my fexibility all day.  Any way that I can throw in a stretch I do.  Also, I agree about the omega 3.  I take cod liver oil for that and I eat omega 3 rich eggs.  This helps with the colon problems associated with fms also.  Thanks and God bless.  May your fms be cast far from you.

[memorylane4ever]

Does anyone think there is something more going on here??? i mean can everyone be just dx'd with fibro all at once??? I guess I think its just weird, you know like a dx's that the doc have come up with when they just don't know??? Could it be something more,, anyone out there with an explanation??? I guess the more I research fibro, I am just having a hard time w/ my own dx... I wish all of us good luck though :).

[tori_1]

A related discussion, Fibro tingling was started.

[DandySandy]

A related discussion, numbness on right side, from head to feet was started.