I am 67 yrs old, started having leg pain yrs ago, then feet pain, couldn't walk very long until severe pain started in bottom of right foot, ex-ray revealed nothing. I stopped working at age 54. Did not apply for disability. Went from Dr. to Dr. until I was diagnosed with Fibromyalgia, over 10 yr ago.
Have Chronic pain over most of body, mostly legs and freezing feet, headaches, fatigue, restless legs. My blood pressure is low. Lately restless legs have increased in evening, mostly during night, sometimes keeping me exercising and walking, etc., for several hours, goes from one leg to the other. I am getting desperate and need help to stop the restless legs. I have been to numerous Drs., lately Pain Management, series of injections in hips, in June '03.
Meds: neurontin 400mg, clonopin 1mg, darvocet N 100,buspar 15mg, imdur 30mg, lexapro 20mg,. I average 4 darvocet in 24 hrs, then suffer in between, sometimes very severe.
I am not happy with the help I am getting with Drs. Seems they just keep increasing medications, which I do not enjoy taking.
I have no social life other than Church because of my pain. My husband wants me to apply to Mayo Clinic in Jacksonville for help.
Any help, suggestions, etc., that you can offer will be greatly appreciated. I have no where else to turn.
I can not provide you with an accurate clinical diagnosis over the internet. Restless leg syndrome is a disorder which involves an uncomfortable sensation in an individuals legs. This sensation occurs when an individual tries to rest. The symptoms are relieved with activity. There are several medications to treat this disorder including neurontin, and mirapex to name a few.
The other possiblity is that you have a peripheral neuopathy. This disorder is characterized by near constant pain in your limbs, and can get more severe with activity. The symptoms in this disorder are do to dying back of the nerves.
To evaluate you problem I would recommend you seeing a neurologist and possibly having an EMG test. This test evaluates the muscles and nerves in your limbs. If you are close to Mayo Jacksonville, they have good neurologists there. Also, there is a CCF Westin which has good neurologists.
Methylcobalamin deficiency can cause many of your symtoms. I had FMS. The severe abnormal fatigue of 15 years durqation lifted in 1 hour flat. The depression of a lifetime lifted in 1 hour flat. Much of the muscle pain faded over the first couple of weeks. My many neuropathies are all improving. My voice smoothged out. My painful bladder became normal. My burning red tongue became normal. I can feel more normally all over my body. I have regained much of my sense of touch which had felt gloved for years. My daily morphine usage is down by more than 1/3 in 9 weeks. The Enzymatic Therapy Bioactive B12 1000mcg methylcobalamin is the only brand I and my family and friends have found effective so far along with a selection of other vitamins.
Another facet of all this is that I have constructed a timeline of my life documenting a series of methylB12 crisis dating back to before the age of two. Taking these symtoms I have at this late date and tracing them back throughout my life, backwards tracing how they evolved and what made a significant difference (only large amounts of liver extract) and what triggered the crises (almost any physical stressor from vacinations to colds to physical injuries) and how they manifested at different times as they got progressivly worse. Based on my experiments with liver extract I had become quite convinced by 1982 that the "protein mystery factor" of the 30s and 40s was not equal to cyanocobalamin even though that was what was identified as B12 in 1949. To find out only now that the cyanocobalamin identified as a result of a laboratory procedure filtering through charcoal and was a laboratory artifact fills in the missing information of how cyanocobalamin was misidentified as the "protein mystery factor" when in fact it is methylcobalamin, the active form in mammals.
Fibromyalgia is a real disorder-- and people do feel real pain and symptoms, but it is also a catch all for doctors to label people into a category when they dont know whats going on and when they dont know what tests to run to find out what neuroendocrine disorder you have-- or WHAT chemical is off in your body.
its a big shame because TONS of people go needlessly suffering without a found cure in their lifetime.
I have a strong medical and research background-- and i care-- because i have gone through a lot of this mess and i know what my underlying problem is causing my symptoms-- just like the last post where the person found their deficiency.
please listen very carefully to my post-- and research as much as you can on the key points i am to talk about.
no doctor ever helped me. i suffered over 10 years and finally found the answers myself. i had to then fight to find a competent doctor that would treat me-- this is very important.
there is something UNDERLYING causing your Fibro symptoms.
you need to find someone that will take you seriously and find out WHAT so it can be replaced-- and you can stop taking those needless drugs.
This i know about Fibro--
possible reasons for underlying causes--
30 % of fibromyalgia patients have an underlying growth hormone deficiency (GHD). most doctors are uneducated about this. find someone who knows about this. GET A IGF-1 level taken immediately-- dont waste time. life is too short.
a low IGF-1 can mean you have a GHD problem in the hypothalamic-pituitary axis (HPA).
a low IGF-1 should prompt aendocrinologist to do a GH stimulation test.
**EVEN IF YOU DO NOT PASS THE GH STIM TEST=YOU STILL COULD HAVE GHD AND BENEFIT FROM GH TREATMENT!! (there are IGF-1 resistences and syndromes that block GH action, but one is still GHD even though they dont pass a test).
some fibro patients show this.
i know many patients benefitting from GH and they have fibro. they report they have their lives back.
if you want to join this group-- it is very competent and you will get help from the other fibro members. We get the most up to date cutting edge medical information to date.
please for yourself join at hgfound.org- then click on adult internet support list.
i thought last year i was going to die-literally. i had no GH.
now after 1 year on GH injections (they HAVE to be injections- other stuff is useless and will not work) i am a totally new person. My quality of life is priceless.
since 30% of fibro people have GHD it is worth checking out.
the others that dont have GHD-- then have something else that is deficient or unbalanced.
like the other person said-- theirs was a B deficiency.
taking all those medications is simply MASKING symptoms of an UNDERLYING disorder. you are treating your symptoms and not your disease. a lot of doctors treat people this way.
you can go on forever from doctor to doctor and all they usually suggest is to run other useless tests like EMG and xrays, etc-- this only tells you you have a problem in your muscles or nerves---- YEAH--- DUH--- we already KNOW THAT. wasted time and money. what a lot dont realize is that many disorders such as fibro and neurological disorders that are not structural, are related to the endocrine system and the many chemicals that regulate the body.
these neuroendocrine chemicals that play a large part in the HPA can also cause those other deficincies like the B vitamin and other deficiencies.
like that person who has Methylcobalamin deficiency - they should also seek a competent endo that will test for IGF-1 and other endocrine reasons for the Methylcobalamin deficiency .
Another thing all of you should SERIOUSLY check out and research as much as you can on is MAGNESIUM DEFICIENCY.
you can have a magnesium deficiency alone or the GHD can cause the magnesium deficiency. its a vicious cycle.
restless leg syndrome-- another "unknown syndrome" in which they want to treat you with yet another DRUG that MASKS the symptoms.
The restless legs are part of an underlying cause.
its better to replace the missing chemical or hormone than it is to take another drug and be labeled with an unknown syndrome!
MAGNESIUM helps with restless legs and many causes of twitching, cramps, depression, anxeity, and much more.
PLEASE research magnesium deficiency!
*****Magnesium attaches to the SAME EXACT chemical receptor as the drug Neurotin****** and helps you naturally.
i can see you going off these drugs you hate- and taking magnesium supplements and this helping you out like you wouldnt beleive.
in the meantime-- find a competent endo that will test your IGF-1 and take GHD seriously as an underlying cause for fibromyalgia.
that group i mentioned will help you find your way to a good doctor.
below is very important info on magnesium that will help you and many others here reading this post-
PLEASE-- if you have any muscle rigidity, tremors, twitching, ANXIETY, depression, AGITATION, mitral value prolpase, heart palpatations, panic attacks, asthma, restless legs, and more-- PLEASE DO A SEARCH FOR YOURSELF ON MAGNESIUM DEFICIENCY. YOU WILL BE AMAZED.
you may even find yourself the answer you have been searching for for so long.
i cant go into all the important facts on this post-- so PLEASE READ AS MUCH AS YOU CAN ABOUT IT!!!!
some important points****
-you CANT take a blood test for it-- its innaccurate-- will come out normal. you need 'intracellular measurements'-- not blood tests!
-do not take magnesium supplements with calcium-- it interferes!
-slow-mag is magnesium chloride-- its a good over the counter supplement that favors better absorption (it has a small amount of calcium but not enough to interfere-- aviod calcium- mag combo supplements
-it is verysafe to take mag-- except in persons with kidney disease
-by taking it orally, it may take 2 weeks to get tissue levels back to normal and decrease your symptoms
- it is a very common deficiency and so widely OVERLOOKED!
- diuretics, caffeine increases magnesium loss-aviod these
-in severe cases you can get injections
it makes me so sad that A LOT of people will never realize this and never research or find this out-- and suffer for so many years.
its time to take control of your own health. please take my post very seriously.
get out of the rutt of not knowing whats going on and being passed on from doctor to doctor and come join and learn from those of us that have found the answers and are much better. We have a lot to share.
at the hgfound.org group we have a lot of medical lierature to take to your doctors to back it up.
this could change your life. good luck and i hope many people read my post-- i am reaching out and teeling you there IS hope out there-- you just need to know how to find it.
I found your comments on HGH interesting and have gone and done some reading. Interestingly the methylB12 has a tie-in. It enhances the production of melatonin, among other things, which have an effect upon HGH production. I had also been taking pregnenolone for a month prior to trying the methylB12. You might find some of these connections interesting.
I was surfing to find information on "beefy red tongue" symptoms and came across this excellent forum.
I have diabetic polyneuropathies - stocking and gloves (PN), Restless Legs Syndrome (RLS), Periodic Limb Movement (PLM), Chronic Pinched Sciatic Nerve (right hip), Obstructive Sleep Apnea (OSA), and GERD. My RLS & PLM are attributed to OBA.
Regards Restless Legs, I was able to replace Clonazepam Rx with Calcium & Magnesium 1400mg/700mg taken each night, but about once a week I still need the Clonazepam. I no longer get the same irritating prickles that made me jump up and walk (which isn't a lot of fun with a pinched nerve), but once in a while, I get a crawling sensation that Cal/Mag doesn't fix and I take Clonazepam then.
I've been able to deal with the various symtoms of each disorder through a combination of meds, vitamins & mineral supplements, a meditteranean style diet and non-prescription medication (Alpha Lipoic Acid for blood glucose control & PN - shooting, stabbing pains).
A couple of months ago I was able to determine that I was probably Vit B12 deficient (GERD & meds) through another (Peripheral Neuropathy) forum. (My doctor has been great & respects my research on my disorders.) My doctor began Vit B12 injections and it has made some improvement in my energy.
I think I am probably suffering low folic acid as well which would account for my tongue problems which have slowly developed over the past seven or eight months from blisters and canker sores to bright red tongue with fissures along sides & teeth indentation.
I am going out today with a shopping list to ensure that I get the MethylB12 you suggest and magnesium chloride (I've been taking calcium magnesium.
I live in Canada and perhaps our wordings are different to yours, e.g. blood glucose uses a different measure. I've been diagnosed with Diabetes Mellitus, which as far as I know, is all Diabetes-2. I see that there are three types on the information you posted. Mine is being controlled by diet and alpha lipoic acid (1200 mg/day).
I will do some research as I don't really know what growth hormone does for adults vis a vis childhood.
Thanks for giving me the addresses. I will follow up. This a particularly informative forum and I appreciate your prompt reply.
i need to tell you a lot of things-- and more i may not list here!!
-read also in this forum about "twitching all over" post about not taking your calcium at the same time as the slow-mag.
-growth hormone deficiency can cause malabsorption of many nutrients and minerals--- a low B vitamin deficiency can be related.
growth hormone causes low IGF-1. An IGF-1 level can be measured by a competent endocrinologist that knows about GH issues.
it is very hard to find a doctor that will take you seriously about adult growth hormone deficiency! do your research on this subject.
- many of your diseases and "syndromes" may be related to a growth hormone deficiency! you NEED TO CHECK THIS OUT for your own well being and quality of life!
***BELOW is medical literature from PUBMED that talks about having low IGF-1 and GH with many of the things you listed in your post.
the literature talks about taking igf-1, but taking GH itself may be much more effective since it might be the hormone your body is missing.
read this article below and PLEASE-- go to hgfound.org and sign up for the adult internet support group-- they will direct you to the right medical channels and proper testing and give you all the literature you need. dont suffer your whole life needlessly-- please check this out!!
GH is secreted from the pituitary gland--- then it travels to the liver and stimulates production of IGF-1.
heres the pubmed literature:
Diabetes Technol Ther. 2000 Spring;2(1):69-80. Related Articles, Links
i hope you come back to the forum and read this post! its so important.
CORRECTION-- above i forgot to add a word--
it should have read: LOW GH causes low IGF-1.
please dont be overwhelmed. it is very important you research this. there are many of us that have already been there and can help you to recovery and with all the medical literature.
this is a REAL disease and it is a real deficiency.
so that you are not overwhelmed-- please join the internet support list at
for many of us the treatment has been a lifesaver-- we feel like we have a totally new life. many doctors are not educated about it so it makes diagnosis and treatment difficult. more doctors need to know about this so that people will not suffer needlessly.
there is so much literature and real life patients out ther getting treated, but it hasnt become "mainstream" knowledge yet.
yes-- GH affects absorption of many nutrients.
if i were you i would seek a IGF-1 test to make sure this isnt the underlying problem causing your malabsorption of B12.
However-- it is not "HGH" (thats what a lot of scam companies label their bogus products)..... it is recombinant GH or rGH injections, prescribed only by an endocrinologist/specialist.
dont be fooled by over the counter products-- its a real marketing scam.
AGHD- adult GH deficiency is real. It is debilitating. it can be sucessfully treated because you are replacing a low or total deficient hormone from your body.
please anyone wanting more info go to hgfound.org
doctor selection is very difficult. if you are on the west coast,
go to Shlomo Melmed (LA), Dr Cook (OR), Dr Merriam (WA).
these are other helpful websites:
GHD in adults can be associated with many causes--- head injury, pituitary tumor, lymes disease, AUTOIMMUNE disease, decreased blood flow to HPA (hypothalamic-pituitary-axis), and more.
the deficiency can affect so many other body systems and endocrine/metabolic biochemistry---
i am a new person after 1 year of treatment.
With my GHD i had peripheral neuropathies, restrictive lung disease, osteoporosis (resulting in pinched nerves from poor muscular support), malabsorption of nutrients, depression, anxiety disorder, lack of concentration, brain fog, fibromyalgia, CFS,etc.
its all better now.
i had a hard time finding a doctor/endocrinologist that knew about this disorder-- this is your most important quest.
dont ever let a doctor tell you it doesnt exist. they did that to me for 10 years and i suffered needlessly.
get the support from the GHD internet groups-- they provided me with much direction and support/medical literature. (hgfound.org)
a IGF-1 test is what you need first, followed by a 2 hour GH stimulation test w/ a provoking agent such as arginine.
Thanks for your advice. I have an appointment with my doctor on Tuesday August 12th and will aks him about GH deficiency. He will prescribe the tests you mention (I'll print out this discussion). It would be great to find an answer like this which resolves some of the ailments I know we all suffer.
Another possibility for nutrient deficiencies is gluten intolerence. My fibro symptoms melted away within a week of trying a gluten-free diet. Now after 3 weeks my neuropathy symptoms are noticeably less. I am sleeping much better. There may be no gastric symptoms associated with gluten intolerence and there is currently no test available to diagnose it. A gluten-free diet is easy enough to try. Basically (very basically) no grains--100 percent or you're doing no good. Be sure to then supplement the lost nutrients with a super nutrition super blend vitamin that has it all.
DrHelp, I am confused about your post on 03 August under this topic. You gave some very good info about Magnesium vs Neurontin. I had been taking Neurontin, but didn't like it one bit so weaned off & started taking B12. But regarding Magnesium, you state: "Do not take magnesium supplements with calcium--it interferes!" Being a 69-yr old woman I understand that I should be taking quite a bit of Calcium. Could you please explain your statement. I appreciate your experience & research. Thank you!
FYI: I'm presently taking daily a B12 Complex, 400 Vitamin E, 500 Vitamin C, 175mg Milk Thistle, and just started on 5000mcg Methyl B12, and 2 tabs of Slow-Mag. Meds daily: Premarin .625 (altho I'm going to start weaning off this soon) & Oxybutynin (Ditropan generic for bladder spasms). Having recently (in Jan.) been diagnosed with PN I occasionally take 10mg Baclofen at night for my leg cramps. This PN is scary & I'm hoping to revive these nerves again.
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