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Neurology (Expert Forum)
Restless legs
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
Restless legs
by ninahh, Jul 29, 2003 12:00AM
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.
Thank you. Ninahh
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.
Thank you. Ninahh
Doctor's Answer
by CCF-Neuro-M.D.-CS, Jul 29, 2003 12:00AM
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.
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.
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.
take care