is it restless leg syndrome or fibromyalgia

hi everyone, I’ve had intense pain for over 40 years in my legs when I lie down , I’ve been diagnosed with ME and then Fibromyalgia who knows what or which it is , I don’t think the specialist know themselves ! Anyway I’ve have had in the past jerks all over which would stop me from sleeping but I don’t get them now but I still have severe pain in my legs mainly below the knee (also in lots of other places on my body ) I just wondered if this is restless leg my doctor said it was many years ago but I’m not sure I use a tens machine which helps a lot anyway to all sufferers of pain I wondered if you would know, take care every who’s life has been affected by pain x

[SueJohnson]

All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

[Hidden in reply to SueJohnson]

Thank you Sue my legs are only painful when I lay down I’m still not sure if Rls but thank you so much for replying to me , take care

[Hidden in reply to Hidden]

Ps yes u get the urge to move my legs x

[SueJohnson in reply to Hidden]

Do you meet the other ones?

[Hidden in reply to SueJohnson]

I have pain but i also feel I need to move my legs , thank you Sue

[Joolsg]

pmcfootandankleclinic.com/c....

They're related so likely you do have RLS. RLS is usually described as unbearable, creepy crawly, pulling sensations, but it also presents as leg jerks and pain.

Before you consider any meds for RLS, ensure your brain iron levels are raised. You can achieve this by raising serum ferritin levels above 100, preferably 200.

Also review ALL meds you're taking because many prescribed for Fibromyalgia actually trigger or worsen RLS. Amitriptyline, Mirtazapine etc are anti depressants commonly used for nerve pain. They worsen RLS.

So, review ALL meds, switch to RLS safe options where possible and raise iron levels.

All set out in Mayo Clinic Algorithm.

There is effective treatment.

[Hidden in reply to Joolsg]

Aah thank you , I appreciate you taking time to give me this info 🥰

[Jumpey]

I have RLS and periodically I have painful lower legs with it.

[Munroist]

If you lie down during the day does the pain start immediately and does it ease if you get up. Does it happen if you stay awake while lying down.

[Geniemb]

Hi Annie, I have suffered with chronic RLS for many years, at those times I cannot sit or lie down for more than the count of 5 and that can continue for several nights until my body just konks out. Now I’ve been diagnosed with fibromyalgia and the pain with that is generalised all over the body in joints etc however fibromyalgia doesn’t keep me awake at night as long as I keep taking pain killers ( which don’t work with RLS) I sympathise with you greatly

, I would say yours is fibro, I believe there isn’t much you can do for RLS. I do take ropinerol which treats Parkinson’s. My doctor , looking to cut costs give me ropinerol but if you look it up ropinerol for RLS is a tablet called adartrel which is, sadly more expensive so he gives me the cheaper alternative , the side effects I suffer. Is weight gain which doesn’t help with fibro, maybe I should change my doctor!!! When I first got hold of adartrel it wasn’t known about nor was it in any medication books, it was my life saver and I never went out without it. I would speak with your doctor and if your RLS is as bad as mine try to get prescribed ADARTREL. Good luck

Gina

[angelflonne]

Hi Annie

I'll stick my neck out but please note I'm not medically qualified in any way whatsoever. I'm 60, contracted ME (Myalgic Encephalomyelitis) some time before I was 30 years old and have had Restless Leg Syndrome intermittently since I was 40 years old.

ME is a type of Chronic Fatigue Syndrome, the symptoms are exhaustion, feeling tired all the time.

Restless Leg Syndrome is a feeling of *restlessness* in the legs (not pain), a desire to move or shake your legs. According to the NHS (UK), you may have had "PLMS" (Periodic Limb Movement Disorder) which affects 80% of RLS patients nhs.uk/conditions/restless-...

You're very lucky if you recovered from your PLMS. Since you have acute pain, in my opinion you neither have ME, RLS or PLMS. I've just checked the symptoms for Fibromyalgia and it sounds like a very good diagnosis, the key difference is *pain* nhs.uk/conditions/fibromyal...

Aside from the pain it seems that ME and Fibromyalgia have similar symptoms which may have lead to your being diagnosed with ME then Fibromyalgia.

Personally I'm in the gym five mornings a week before work doing a hard workout, I weigh and count every last calorie, write down everything I eat, track my weight and waist daily, avoid a small number of foods that disagree with me and lately I've become a strong advocate of Ashwagandha, an Indian medicine that has revolutionised my life by completely eradicating anxiety.

I hope that helps you

[Jenevewill in reply to angelflonne]

Are you on medication for restless legs ? What foods do you avoid ?

[angelflonne]

No and virtually none. I went to my doctor, he prescribed me something I didn't request, I looked it up here and found it was well known for making symptoms worse, it was making me drowsy all day and after two days I threw it in the bin.

Since then I've been taking curcumin, about 400mg a day which is a low dose, and all my symptoms have gone. There is an article I discovered after I started Curcumin which backs its use up blakeleyfoundation.org/rest....

I'm following the medication in the rest of that article but I don't know if it makes any difference, the curcumin definitely works. You don't need some special version, I bought the cheapest I could find from a health shop and use a measuring spoon.

The only food I avoid for RLS is caffeine and I still drink coffee in the morning so pretty much like everyone else.