Restless Leg Syndrome

Posted by jimbourg8 @jimbourg8, May 14, 2016

I started having this burning feeling in certain pressure points in my body. Mostly on the elbows, under forearms mostly on my left side ….mostly worse in the late afternoon and evening. It’s usually burning and/or uncomfortable feeling when I am sitting down on couch or chair. the burning sensation like I said on pressure points of the elbows, legs, or butt when sitting even if only 2 mins or so and seems like I can’t remain still…….upon getting up and moving around it relieves the sensation. Went to neurologist 4 years ago……….he confirmed that it was Restless leg syndrome…………there are different types of RLS but the classic symptoms are a feeling of burning, tingling, and a general sense of unable to relax when quietly sitting or even laying down and relief comes when changing position and/or getting up. Diagnosis is by symptoms….there is not a definitive diagnostic test………all bloodwork etc…. is normal . I now take Gabapentin, and Klonopin to calm the “restless” nerves………..there is no cure for this ( my Neurologist says )……..It’s just something you have to learn to live with and take those medications for it……….It is believed there is a link between low iron (which I had) and and RLS . Now I take more iron (but that does not alleivate the symptoms so far . ( even when iron level becomes normal ) . I was diagnosed with low thyroid 5 years ago and started taking the levothyroxine to put my thyroid back to normal which it IS NOW. But even though I still have the RLS……..there is a possiblity that I had LOW thyroid for years before I was diagnosed with it……..hence I think (my theory) the RLS evolved due to the years of LOW thyroid. This is just my thinking on this. No Dr. Told me of that…..anyways I hope maybe this helps others and they can begin to pinpoint their symptoms and get a diagnoses.
I would love to know others with RLS and how they have dealt with it over the years. It seems to be a tricky act to balance the medications with side effects and still manage the RLS……..appreciate any feedback. Thanks Jim B.

Im looking for some type healing from drop foot along with the neuropathy. There was an ad in the paper to cure neuropathy but they wouldn't take Aetna insurance.. so I didn't pursue it.

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@bburleson1

Hi; I've also used a spoonful of mustard that will immediately relief any cramps in your legs or hands..I've tried it and it worked for me.

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@bburleson1 Yes I agree a friend use to carry mustard packets when she would go out It's good for superficial burns also I burned my hand on hot coffee The waitress put mustard on it took the sting out

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@bburleson1

Im looking for some type healing from drop foot along with the neuropathy. There was an ad in the paper to cure neuropathy but they wouldn't take Aetna insurance.. so I didn't pursue it.

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Hi, @bburleson1 – for the foot drop along with the neuropathy, you might post your question here where there are lots of members dealing with neuropathy https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

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@cjc56

I am getting great relief with Gabapentin. I have been on it for 3 to 4 weeks now. I feel like i have died and gone to heaven. I didn’t think i would ever know what it was like to sleep through the night and go from waking up anywhere from 6 to a dozen or more times a night to waking up once or even none at all. I had several nights each week that i wasn’t able to get to sleep until 4 or 5 in the morning. Getting up 4 to 6 times to stretch out my legs to try to get some releif, I tried elevating them, the heating pad, walking, a lot of days, nothing worked. I take 2- 300 mil capsules about 2 1/2 hrs before i go to bed. I am almost 60, and for the first time in my life, i feel like when i wake up in the morning, i am rested. I have never felt that before. I have suffered from restless legs, as far back as High School, never knowing what it was.

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I think you are right on to suspect harmones. Example, Study the"Brain Barrier". Magnesium jel helps at night when rubbed into the lower leg. But, when magnesium accumulates in the brain barrier and does not dissipate fast enough, it can aggeravate RLS. My RLS started after I had weakness and was hospitalized from Hypercalciumia (From the hypothalmas.) I had taken 2 years of flomac for osteopenia and it affected the gland. Like wise I have a low Vit D and am on a 6 month boost. I hear a ferrin test is needed for over 76, since this has been associated with RLS. I had a negative brain scan with no tumor. But I have real leg jerks and intention hand motion., more thalmus.

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Regarding RLS: I have it my sisters have it and my mother had it and I believe there is an inherited tendency to develop this condition. There is also a similar condition called Periodic Involuntary Limb Movement or PILM when the limb moves in a fast jerking motion. My experience with RLS was that it was a compulsion to move the legs in a sweeping motion. PILM was totally involuntary and nothing slow or sweeping in the movement.

I found taking Vit D3 starting at 4000 IUs stopped the RLS and I am now down to 1000 IUs. The PILM was a reaction to Benadryl and Ambien. I can now take a nibble of Ambien when needed but I cannot take Benadryl at all.

I have also had great misery from muscle spasms in the legs through the night, especially excruciating spasms along the shin bone. I started drinking more water and taking magnesium at bedtime and after about a week, the muscle spasms totally abated.

I hope these are possible resolutions to your issues. We are all different but who knows what will work until we try it.

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@cjc56

I agree Jim. We all have to take the information we are given and find what works best for us. They actually want me to take 2- 300 mili pills, 3 times per day. The ones at night for my legs and the rest of the dosage to posibly help with some deep brain seizures they think i might be having. Gabapentin was originally created to be a seizure medication.
That is odd, Lynn. I had been taking Tylenol PM to help me sleep at night, and my doctor told me that it has Benadryl in it and not to take it any more for sleep. That could have been making my RLS worse. Good to know, Thanks!

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FYI: I too have Fibro & CFS.. w/ Restless Leg Syndrome…i take Magnesium & do exercises for < of symptoms. I also do Epsom Salt baths for RLS. Do NOT take Benadryl ) an Anticholernergic Rx b/c it hastens memory loss / Alzheimer’s! Check out your meds as to this… it was an alert issued about 2yrs ago. I still have RLS & considering your sit. I wonder if you have Fibro. It is rare for men, but my neighbor had a severe case of it.( RIP) he took a slew of supplements to try to relieve the issues…. he & I talked about our issues. I validated what he was going thru.
OST recently I discovered Guifenisin protocol for Fibro. It helps w/ reduction of pain! I also take (Costco brand Glucosamine /Condroiton and Tumeric… I KNOW they help me! I take 2 x Gluc. In am & 1 @ pm. Tumeric 1 x am & pm. Wish you much luck!

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You might look into your symptoms of Lyme Disease! Lyme has come to the forefront as of late with the news that both Shinia Twain and Justin Beiber both suffer from it! If you go on line and Google Lyme Disease you will see a ton of information! I've suffered from it for at least two years and there has been more information published on it sunce the firat of the year than the previous 2 years.
I have found that some symptoms I had that I didn't know what it was has now been linked to Lyme!
More people should explore Lyme Disease! It is one of the most underdiagnosed illneses out there today.
Very scary the amount of people who have it but don't know it. They contiue to feel Bad but don't know why!
OWK I take some of the same "drugs" as you as far as the Holistic. I do the Epson Salt baths. I still sometimes have RLS! What kind of magnisuim do you take? A certain label?
Thanks So much for the info! Let me know.
Richard(aka.. Sundance)

Liked by lioness

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@sundance6

You might look into your symptoms of Lyme Disease! Lyme has come to the forefront as of late with the news that both Shinia Twain and Justin Beiber both suffer from it! If you go on line and Google Lyme Disease you will see a ton of information! I've suffered from it for at least two years and there has been more information published on it sunce the firat of the year than the previous 2 years.
I have found that some symptoms I had that I didn't know what it was has now been linked to Lyme!
More people should explore Lyme Disease! It is one of the most underdiagnosed illneses out there today.
Very scary the amount of people who have it but don't know it. They contiue to feel Bad but don't know why!
OWK I take some of the same "drugs" as you as far as the Holistic. I do the Epson Salt baths. I still sometimes have RLS! What kind of magnisuim do you take? A certain label?
Thanks So much for the info! Let me know.
Richard(aka.. Sundance)

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RE: Mg… i get mine usu. @ Costco too. They are Extra St 400 mg tabs
.
As to Lyme.. my 1* care poo pooed it.. she THINKS she knows I couldn’t have been exposed to or bitten by a tick…. I knew w guy who got them in his privates while out hunting! Sounds super uncomfortable!!

All my Fibro issues were. Informed by 2 espérate MDs. I didn’t tell my personal MD but was told by my W/C MD for Carpal Tunnel issues that after my surgery on @ thumb( De Quervaines Syndrome) poof… I have the whole enchilada! I had it confirmed by a third b/c I developed excruciating IT pain( Illini tibial Band on the outside of my hip area. Hurt sooo bad to try to sleep!! I found a paperback book at the Rx store called what your MD never told you. Boy was it enlightening! And spot on! Lo also looked into Books on the topic.. there is one pink book ( loaned out) or I’d share the MD author. I just weren’t to the medical section of the book store and bought books to read…. talk about enlightening!! I dint care if the MD takes issue w/ my ?s… I told her right up front I wanted to be a part of my treatment team. I hope she didn’t mind me asking ?s.. I’m trying to soak up info to better understand the disorder & Tx.. even found the Mayo Clinic is considered in my insurance coverage Vs out side my scope of resources! Already went to Rochester w/ a family member. It was sooo unbelievable to see it was a whole day of MD appts starting w/ a 7:40 am blood draw. You stay at poss. The adjoining Marriott and walk underground to the wing where all the MDs offices are.. then across the patio to the Liaison.Then …. Back home. You take all testing and x-rays/ MRIs.. w/ you and get a special Pt rate for the flight… I have yet to find an Expert in Fibro here in ALBUQ., NM ! I now had Osteo Arthritis on top of Fibro & CFS! My joints swell u like watermelons! Urgent Care staff freaked when they did a Doppler scan of my previously Fxd R/ankle! Pardon Sp / typos… long nails! joy.. they never tell you that if it was injured/fx’d.. you get arthritis as an older person! Yeah!! Soc.Sec. & Pain! Just what I wanted!!

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@sundance6

You might look into your symptoms of Lyme Disease! Lyme has come to the forefront as of late with the news that both Shinia Twain and Justin Beiber both suffer from it! If you go on line and Google Lyme Disease you will see a ton of information! I've suffered from it for at least two years and there has been more information published on it sunce the firat of the year than the previous 2 years.
I have found that some symptoms I had that I didn't know what it was has now been linked to Lyme!
More people should explore Lyme Disease! It is one of the most underdiagnosed illneses out there today.
Very scary the amount of people who have it but don't know it. They contiue to feel Bad but don't know why!
OWK I take some of the same "drugs" as you as far as the Holistic. I do the Epson Salt baths. I still sometimes have RLS! What kind of magnisuim do you take? A certain label?
Thanks So much for the info! Let me know.
Richard(aka.. Sundance)

Jump to this post

I buy "Nature Made" supplements and the magnesium is 250mgs. I think any name brand supplement would we dependable.

I have been tested for Lyme and although I had it a few years ago, I don't have a current infection.

Overall, I feel pretty good for a 75 YO. I'm still very active and if my gym weren't closed for Covid-19, I would be even more active. My physical problems are under control now but I found I needed to be proactive and open minded in determining what works.

I wish good health to everyone reading this. Please stay socially isolated as much as possible. In NYS, masks/face coverings are now required for going into public spaces such as grocery stores and must also be worn outside if in a situation where one cannot remain 6 feet apart from others. I am fortunate to live upstate with room to walk and enjoy the good weather, see my neighbors (from a 6 ft distance) and even share a glass of wine — everyone brings their own and we sit far apart on our deck.

REPLY
@onewhoknows

RE: Mg… i get mine usu. @ Costco too. They are Extra St 400 mg tabs
.
As to Lyme.. my 1* care poo pooed it.. she THINKS she knows I couldn’t have been exposed to or bitten by a tick…. I knew w guy who got them in his privates while out hunting! Sounds super uncomfortable!!

All my Fibro issues were. Informed by 2 espérate MDs. I didn’t tell my personal MD but was told by my W/C MD for Carpal Tunnel issues that after my surgery on @ thumb( De Quervaines Syndrome) poof… I have the whole enchilada! I had it confirmed by a third b/c I developed excruciating IT pain( Illini tibial Band on the outside of my hip area. Hurt sooo bad to try to sleep!! I found a paperback book at the Rx store called what your MD never told you. Boy was it enlightening! And spot on! Lo also looked into Books on the topic.. there is one pink book ( loaned out) or I’d share the MD author. I just weren’t to the medical section of the book store and bought books to read…. talk about enlightening!! I dint care if the MD takes issue w/ my ?s… I told her right up front I wanted to be a part of my treatment team. I hope she didn’t mind me asking ?s.. I’m trying to soak up info to better understand the disorder & Tx.. even found the Mayo Clinic is considered in my insurance coverage Vs out side my scope of resources! Already went to Rochester w/ a family member. It was sooo unbelievable to see it was a whole day of MD appts starting w/ a 7:40 am blood draw. You stay at poss. The adjoining Marriott and walk underground to the wing where all the MDs offices are.. then across the patio to the Liaison.Then …. Back home. You take all testing and x-rays/ MRIs.. w/ you and get a special Pt rate for the flight… I have yet to find an Expert in Fibro here in ALBUQ., NM ! I now had Osteo Arthritis on top of Fibro & CFS! My joints swell u like watermelons! Urgent Care staff freaked when they did a Doppler scan of my previously Fxd R/ankle! Pardon Sp / typos… long nails! joy.. they never tell you that if it was injured/fx’d.. you get arthritis as an older person! Yeah!! Soc.Sec. & Pain! Just what I wanted!!

Jump to this post

??? ARE YOU IN ABQ? THAT IS WHERE I AM! If so there is no one! If you are here I went to every dept. at Preys. The only one who said It was Fibo was my Reumatoligist! But it was my orthopedic doc that said it was Lyme! He came from KC and started out as a microbiologist studing Lyme! My PC would never admit to it even when I carried in a list of all the symptoms that matched exactly to mine!
What I have researched is that they are all of a sudden they are discovering that many golfers are coming down with Lyme. We go out in the "ROUGH" looking for our ball and get bitten and we don't realize it. Since I am in the golf industry I've played everywhere in the country and many places in the world!
There has been an add on Sirus radio about a Fibro test, have you heard it?
Keep me posted on how you are doing.
If you are in ABQ let me know and I will give you the doctors name that diagnosed me with Fibro.
Richard(Sundance)

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@degarden_girl

I buy "Nature Made" supplements and the magnesium is 250mgs. I think any name brand supplement would we dependable.

I have been tested for Lyme and although I had it a few years ago, I don't have a current infection.

Overall, I feel pretty good for a 75 YO. I'm still very active and if my gym weren't closed for Covid-19, I would be even more active. My physical problems are under control now but I found I needed to be proactive and open minded in determining what works.

I wish good health to everyone reading this. Please stay socially isolated as much as possible. In NYS, masks/face coverings are now required for going into public spaces such as grocery stores and must also be worn outside if in a situation where one cannot remain 6 feet apart from others. I am fortunate to live upstate with room to walk and enjoy the good weather, see my neighbors (from a 6 ft distance) and even share a glass of wine — everyone brings their own and we sit far apart on our deck.

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@degarden_girl I use Nature Made also for my calcium with vitamin D3. It has some type of certification so I figure maybe it’s more reliably accurate in its formulation.
I wish you lived close to me, I’m 72 and I think I’m the oldest woman at the gym. There are woman my age and older at the health club but they do water exercises and some do Zumba. I never see any of them in the gym.
We too, in NH, have plenty of space to walk in our neighborhood. People are very respectful of leaving a distance between themselves and others.
You do not have a current Lyme infection, but once you have it don’t you always have it inactively? Or, if caught early can they cure it totally? I’m thinking the latter because my step-daughter and her daughter have both have had it (they used to live on an island off of RI) but do not seem to have residual effects. I have a niece who has had it also but she has flare-ups. It can be really nasty if not caught early.
JK

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@contentandwell

@degarden_girl I use Nature Made also for my calcium with vitamin D3. It has some type of certification so I figure maybe it’s more reliably accurate in its formulation.
I wish you lived close to me, I’m 72 and I think I’m the oldest woman at the gym. There are woman my age and older at the health club but they do water exercises and some do Zumba. I never see any of them in the gym.
We too, in NH, have plenty of space to walk in our neighborhood. People are very respectful of leaving a distance between themselves and others.
You do not have a current Lyme infection, but once you have it don’t you always have it inactively? Or, if caught early can they cure it totally? I’m thinking the latter because my step-daughter and her daughter have both have had it (they used to live on an island off of RI) but do not seem to have residual effects. I have a niece who has had it also but she has flare-ups. It can be really nasty if not caught early.
JK

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JK, Just to let you know, Lyme is the worst illness or medical issue I have ever had IN 73 YEARS because it was not taken care of early enough! I was misdiagnosed, not given enough antibiotics early enough!
I've lived through Stage IV Colon cancer, was given an hour to live because my reaction to the chemo, and a TBI (Tramatic Brain Injury) and nothing can compare to Late Stage Lyme!
It has taken my Life and made it hard to survive!
Richard(SUNDANCE)

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@sundance6

JK, Just to let you know, Lyme is the worst illness or medical issue I have ever had IN 73 YEARS because it was not taken care of early enough! I was misdiagnosed, not given enough antibiotics early enough!
I've lived through Stage IV Colon cancer, was given an hour to live because my reaction to the chemo, and a TBI (Tramatic Brain Injury) and nothing can compare to Late Stage Lyme!
It has taken my Life and made it hard to survive!
Richard(SUNDANCE)

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@sundance6 Richard, I know too well the ravages of Lyme. It really is horrendous to have to live with the flares and all that it does to a person when it has not been treated early enough, or well enough.
There is a specialist in MA who is supposed to be excellent but the wait to see her is very long. I suspect that you have already researched all avenues to find who can be the most helpful for you.
I wish you the best in dealing with Lyme and hope that you can keep it from affecting you any more than it has already.
JK

Liked by lioness, sundance6

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JK, Thanks for the words of encourgment! Not sure what can be done that dosen't cost a ton of $$ in medication and travel! I know how this relapse started, expending my energy to far! I knew it would happen when I planned the trip I made. But I didn't think it would be this severe! But added on top of it is what is happening in the world today! Just added stress!
So I need to understand how to deal with it! I saw Dr. Phil last night on the TV! He explained the amount of Stress we are all under. He explained ways of getting ourselves back into our rotine. Working at it today!
Good luck to you!
Richard(Sundance)

REPLY
@degarden_girl

I buy "Nature Made" supplements and the magnesium is 250mgs. I think any name brand supplement would we dependable.

I have been tested for Lyme and although I had it a few years ago, I don't have a current infection.

Overall, I feel pretty good for a 75 YO. I'm still very active and if my gym weren't closed for Covid-19, I would be even more active. My physical problems are under control now but I found I needed to be proactive and open minded in determining what works.

I wish good health to everyone reading this. Please stay socially isolated as much as possible. In NYS, masks/face coverings are now required for going into public spaces such as grocery stores and must also be worn outside if in a situation where one cannot remain 6 feet apart from others. I am fortunate to live upstate with room to walk and enjoy the good weather, see my neighbors (from a 6 ft distance) and even share a glass of wine — everyone brings their own and we sit far apart on our deck.

Jump to this post

With you attitude and good food, you will live like Job and Solomon to 140 yrs. old .Look over your shoulder, when you do, and some of us will be with you.Ha!

Liked by lioness

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