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

[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 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, 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