Ongoing leg pain: I have suffered with... - Restless Legs Syn...

Restless Legs Syndrome

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Ongoing leg pain

Mum007 profile image
7 Replies

I have suffered with restless legs for around 40 years. It comes and goes, sometimes it’s horrendous and other times completely gone. I also get it in my arms just as much. I take iron magnesium and I’m on HRT. Luckily I have never given into the restless legs drugs as yet. My problem is that for the past 20 years or so I have suffered with leg pain usually from my hips to my knees. Over the years it has got progressively worse and it also comes and goes. I get it on resting as well as walking. It feels like I have done a 30 mile walk, throbbing and burning and quite tender to touch sometimes. I have never slept well and I also suffer from PLMD and I was wondering if anybody with restless legs also suffered with this, I was wondering if through thrashing around at night for years has maybe caused some permanent damage to my joints or muscles. I am not overweight,don’t smoke and I do lots of exercise. I used to go mountain walking/hiking but I’m finding the leg pain gets too painful now when I walk for any length of time. Doctor doesn’t really seem interested and just says it’s not arthritis (blood tests), I’ve been tested for nerve pain and the conclusion was it’s probably fibromyalgia as I also get fatigue on and off. Any ideas?

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7 Replies

Hi, your doctor may be right. It might be fibromyalgia.

Some people experience their RLS as pain.

It does sound a little like neuropathy which does cause nerve pain. However, I although I get tenderness and burning pain with my neuropathy, I also get tingling and have a few numb spots. I never get throbbing pain with it.

"Probably" fibromyalgia isn't a useful diagnosis. Has the doctor done anything to confirm it's "really" fibtomyalgia? Admittedly it's not easy to diagnose.

Mum007 profile image
Mum007 in reply to

I do get tingling in my hands and feet from time to time and they feel numb and cold especially if I am out walking. I probably didn't describe the throbbing correctly, it is more like a very strong ache, a sore feeling. I went to a fibromyalgia clinic but because I didn't seem a very bad case, I am very fit and tend to push through the pain, I didn't get much sympathy..I had a nerve conduction test which was clear and blood tests which were all ok but I know there is no definite diagnosis. The problem is I can be so tired one day and be sore and the next day I could run a mile or do gardening all day.

in reply to Mum007

I'm sorry, I can't really help.

I do have a neuropathy which is mainly in my legs, both of them, but more so in my left leg. I know it:s due to a compressed nerve in my spine due to degeneration.

I've never had a nerve conduction test though, I had an MRI in 2017 and last year I haf a bone scan.

None of that however gives me fatigue one day and not another. That does sound more like fibromyalgia.

I do believe however that for a diagnosis of fibromyalgia you have to have "ttrigger points", very specific spots which if you press them, you have pain. If I recall correctly you have to have at least 3 of these on both sides.

Kratom has helped me tremendously.

I notice some people say oh it banned I better not.

Read the side effect of the meds Dr offer.

This stuff works in 20 min 2 to 3 grams every 4 to six hours.

Personally no one or any law will get me to not try natural solutions that work.

Its a cousin of the coffee plant. Can't kill you.

If your really tired of it try it.

If you'd like a source to get it from my son has a online company.

Pm if you want more info.

LotteM profile image
LotteM in reply to

That is wonderful, Dave. I hope it lasts! Several other people have reported about the effectiveness of kratom for RLS. I have a small supply to use as a rescue. It works fast! About 30 min to get relief. And for me 1 gram suffices.

However, people that reported using it daily said they had to up the dose after a while. How is that with you? And is your current dose sedative or stimulating?

in reply to LotteM

I use the same strain

Mange da red

Its the strongest.

I can you a gram duri g the day if I'm up and about. At night and when sitting around which my back requires.

Then I up the dose.

I've not had the issue yet.

I'm not looking for the mental effect just the opioid antagonist part.

It just blocks the receptors and legs do not twice.

I need none as long as I'm moving But I can't constantly move.

I have a great friend of my sons who has a site to get quality tested kratom cheap.

A lot of companies blend the kratom..

I'm so looking forward to sleep we added the colonopin today Wahoo.

LotteM profile image
LotteM in reply to

Thanks Dave, yes I know, we're using our meds to relieve the awful 'urge to move'; that's all. Too bad the kratom doesn't let you sleep. Have you tried the red vein Borneo? It is supposed to be the most 'sedative' one and may allow sleep. Worth trying if you can get hold of it? I find that lack of sleep, or simply insufficient sleep makes the legs worse. So yes, sleep is important. And of course not only to make the legs behave a little better.

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