PLMD and restless legs: I am now 6... - Restless Legs Syn...

Restless Legs Syndrome

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PLMD and restless legs

slim1953 profile image
23 Replies

I am now 67. This started at about 25. I have been reading about other conditions that are linked to this.

Arthritis is one. I have a spinal stenosis and sciatica. Not helpful having the spasms. Right knee also now needs replacing. Arthritis in the hands and shoulder. I no longer go to bed. There is no point. Legs start and i cannot get up because of the back.

Life, if you can call it that is more a miserable existance.

Because the specialists are just that no one sees the overall picture.

Anyone else out there feel the same as i do.

23 Replies
smilingjane profile image
smilingjane

Hi slim53

I am so sorry to hear of your suffering.

I havent the knowledge to advise you re conditions linked to RLS. It is so varied that best to leave to the experts on this forum.

I can empathise with you and truly understand how miserable untreated restless limbs can be.

There are effective treatments out there.

But with those treatments can come problems. as you may already be aware.

Take note of advice on this forum. I am being effectively treated now.

Your life hasn't got to be miserable. Seek out a doctor or specialist to prescribe effective medication to help you out of your horrible current state.

I hope you find help quickly 😊

Hi and you have my sympathy.

I can appreciate to some extent what it may be like to have severe RLS having experienced this myself. However to also have arthritis must be doubly awful as each contributes to the other.

In your case it seems that you have idiopathic RLS/PLMD as you've had it from a fairly young age and presumably preceding the arthritis.

It's true there's a link between RLS and both rheumatoid arthritis and osteoarthritis and there's different reasons for this. In your case, your arthritis may be an aggravating factor rather than a cause of your RLS/PLMD.

Since I have absolutely no idea if what treatment options you've tried for your RLS/PLMD I will resist launching into all the options in detail. It may be that you've tried them all, but it may be there's some you haven't. It depends partly on the expertise of any doctor or other health professional you've been depending on for any treatment.

But here's a brief overview

The treatment for RLS/PLMD for somebody with arthritis is no different from the treatment for anybody else.

Pharamacological treatments include alpha 2 delta ligands, dopamine agonists, benzodiazepines and opiates.

Non-pharmacological treatments include iron therapy, and the correction of other deficiencies e.g. magnesium, vitaminB12, vitamin D

The avoidance of medications which are know to aggravate RLS e.g. antidepressants, some antacids, sedating antihistamines, some antihypertensives, beta blockers plus others.

Dietary measures, including the avoidance of alcohol and sugar, low carbohydrate, low oxalate, gluten free, lactose free, FODMAPS, anti-inflammatory diets.

The use of creams, gels etc which may relieve symptoms temprorarily e.g magnesium, local anaesthetics, counterirritants.

Devices, including vibrators, massagers, compression stockings, weighted blankets.

New treatments being investigated but not yet licensed for RLS/PLMD including Dipyridamole, Suvorexant and repetitive Transcranial Magnetic Stimulation (rTMS).

Cannabis.

I hope this may give you some ideas and hope of finding some relief.

Graham3196 profile image
Graham3196 in reply to

Hi Manerva I have seen rTMS proposed as a treatment for depression but not for RLS. Are you referring to its use for the depression that often accompanies RLS or actually to treat the RLS.

I hope its nothing like an MRI I had to be drugged to tolerate lying in one of those! Doctors should ask patients if they are claustrophobic when referring you to an MRI. If you are then the crew at the MRI are used to it and can give you a puffer of relaxant so it becomes a good experience. Don't plan to drive yourself home though. In Australia I had to pay AUD90 for the puffer but it was the only way I could do the MRI so I thought it was worth it. The MRI was free.

in reply to Graham3196

Hi Graham, yes I am referring to the same rTMS that is tried for depression.

It is also now being investigated as a treatment for RLS. Please see the posts from Arjiji. The main benefit is that it can promote sleep. No evidence of symptom relief.

There is currently a commercial version of a rTMS device currently available which is nothing like a MRI scanner. It comes in the form of a fairly compact headband!

The company that produces it does not claim it can treat RLS.

Graham3196 profile image
Graham3196 in reply to

Thanks.

Annie2133 profile image
Annie2133

So sorry to hear this!!!! Please know that you are not alone and that I'm sending love and light to you!!!!

slim1953 profile image
slim1953 in reply to Annie2133

Thank you

oldfidgetlegs profile image
oldfidgetlegs

Hi Slim53

I totally sympathise. I have spinal scoliosis and underwent a 12-hour operation to fuse most of my lower back. Also osteoarthritis of feet (also operated on including 2 toe amputations) in knees and hips. There have been nights when I have self-harmed simply to feel a sharp and specific pain somewhere else in my body just to divert it from the legs/back/knees/hips scene. I've tried many combinations of medication without any breakthrough success but now take 150mgs Pregabalin twice a day (lunch time and again in the evening) with 0.25mg

Ropinirole which I'm trying to wean off, a couple of co-dydramol and sometimes 10mg amitriptyline. Some nights I get through without waking, others I simply get up and bake bread, do the ironing, paint a wall! Anything which is an activity to take my mind off the agony going on in my body. I forget sleep and can catch up at some time later. My medication regime is not ideal, as you will see if you read the excellent advice given on this site, but please keep going back to your GP to tweak your medication. By the way, I'm 73 and have suffered with this for as long as I can remember and have never found anyone who understands - this forum is brilliant. I wish you good luck.

slim1953 profile image
slim1953 in reply to oldfidgetlegs

I understand totally. Doing things to take your mind off the pain is what i do. Drives my wife mad bless her. Always gets up to a mess. The doctors have no idea. I tell them what i want to try and they give it to me. As for operations all i get are excuses as to why they cannot do them.

Nlthomp profile image
Nlthomp

Hello slim,

I’m very sorry to hear you’re living with such pain and misery. Although I don’t have all of the medical issues you mention, I have some that are being treated successfully (well, most of the time 😊)

For RLS of 20+ years I take Pregabalin 150mg late afternoon and again in the evening. Also 1mg of Ropinirole in the evening. When I have breakthrough RLS I use mentholated CBD cream and wrap my legs tightly with ice packs. I find it helps quite a bit, when also listening to calming music. 50mg of Tramadol at bedtime takes the edge off and helps with sleep.

For spinal stenosis I had a laminectomy in February. Like you, I have arthritis in my knees (R knee replacement 2013), both hands and feet. Visit with a rheumatologist scheduled for November. Have you seen this type of specialist to determine what type of arthritis you have? In the meantime, I find that Celecoxib 100 mg twice a day is helpful. For breakthrough pain, over the counter Ibuprofen helps. I’m also going to physical therapy to treat the overall stiffness and regain strength. I find it to be very helpful, although I’m very sore after my visits, I’m beginning to feel stronger. Once again, for nighttime throbbing knee pain I find CBD mentholated cream and ice to be helpful.

I know how hopeless and overwhelming these chronic conditions can be, but if you can find knowledgeable specialists (I know 😂, but after trying several, I’ve found some great doctors), you can begin to treat each condition individually. It takes time, a lot of research and patience.

Have you read some of the information on the rls.org website? I wrote to them and got a free membership. Now I receive lots of helpful information and newsletters. There are webinars you can attend, as well. Everyone there has suffered with this dreadful disease, so you receive lots of knowledgeable support. I also contacted the RLS specialist Dr. Mark Buchfuhrer for advice. He responded the next day with lots of helpful information and advice. The yellow boxed email link is on the website.

You will get tons of helpful advice from the experts on this website. At the very least, you will know that you are not alone. Best of luck to you!

slim1953 profile image
slim1953 in reply to Nlthomp

I cannot take ibuprofen as i have a hyatus hernia and barrett's with ulcer so not allowed. Oxycodone hydrochloride for the pain but that doesn't last long. The spasms now come anytime. Day and night. All i have to do is sit down and within half an hour they start.

Nlthomp profile image
Nlthomp in reply to slim1953

Have you thought about buprenorphine? Check out Shumbah’s posts. She’s got a lot of info about it.

slim1953 profile image
slim1953 in reply to Nlthomp

Hi. Yes i have. Been a member for many years. I used to be on one in California. I lefe as so many people i used to chat with commited suicide as they could no longer stand the pain. That was 20 years ago

Nikki609 profile image
Nikki609

Hello yes I just sent to my orthopedic doctor and I have cervical disc bulging and it is causing me a lot of stuff going on also I have lumbar spine ddd. I get leg spasms ALL the time and at night it’s a lot worse cause the rls kicks in so I feel your pain feel better

slim1953 profile image
slim1953 in reply to Nikki609

I know what that's like. I also have a bulging disc and a slipped one

C4 and C5. I hope they do somthing soon.

Steve.

Graham3196 profile image
Graham3196

I have sent a message by private message. I hope there is something there that will help you.

Sandramilnes profile image
Sandramilnes

Hello

My thoughts are with you Slim.

I'm 63 and live alone with my dog. 6 years ago I was fit and healthy, I did have RLS and it was manageable. I had a good job and played badminton 6 hours a week, I climbed nearly all the fells in the Lakes and walked the coast of the Isle of Wight with a tent on my back (72 miles in 4 days). I now struggle to walk even the shortest distances because of arthritis and I'm waiting for hip replacements. Ive had bilateral tendinitis for over 12 months and I'm waiting to see a Parkinson Disease specialist. GP's are oblivious to the symptoms and I have been their guinea pig for years through experiments with medication for RLS which has seriously affected my life. I'm not allowed to sleep or rest.

The physical jerks of RLS are crippling on my already painful joints, yet RLS is not recognised as a disability and its not taken seriously by the medical profession to warrant trials for a cure. My immediate family all have RLS and different levels. My mum is in the final stage of Parkinsons. I still find time for crafts and can laugh and feel happy some of the time. I believe that one day some ordinary person will discover how to control this crippling disease.

slim1953 profile image
slim1953 in reply to Sandramilnes

Hi. Thank you so much for replying. So sad to hear your story. The jerking legs are not restless legs. That is called periodic limb movement disorder

PLMD for short. The specialist always say restless legs with plmd. The othfer way round for me but they say not. The professor who diagnosed me said it was the dopamine receptors that were not working properly.

I sleep in a chair. Oxycodone hydrochloride helps with the spasms and the pain.

I hope they do somthing soon for you. I live in Hedge End. My daughter in Portsmouth

She also has PLMD. It is hereditary.

God bless.

Steve

If you are over here call in for a cuppa.

slim1953 profile image
slim1953 in reply to Sandramilnes

citizensadvice.org.uk/law-a.... This may help

HughM profile image
HughM

I suffer from severe RLS and get about 75% freedom from a dose of just 0.088 of pramipexole and am glad to say I have not had any of the side effects that I was warned of, I know that if I miss taking the tablet at 4pm then by 7 pm I will have an hour or three of severe symptoms. I have tried to investigate the dietary treatments but have not come to any conclusions. If I have a strenuous day of physical work then I usually get some mild symptoms the following day, usually when relaxing.

slim1953 profile image
slim1953

Not tried that. Will ask my gp

mmb8083 profile image
mmb8083

Yes I absolutely feel the same as you describe. Some days I ask the question “why me”? It robs you of the simple pleasure of going to bed and actually going to sleep which of course causes all kinds of other health problems due to never getting anywhere near the rest that you need to live a healthy life. I must add that this particular forum has the most knowledgeable people ready to answer our questions intelligently. So glad I found this site. I also belong to a few other RLS groups but I must say the “knowledge “ isn’t evident on those sites. Here you can learn more than what most doctors in the country could ever teach you about this maddening disorder. Many thanks to all

Pindarinda profile image
Pindarinda

I an also suffering plmd at daytime as well as during the night. My legs kick unvoluntary all the time. It’s exhausting.

Please take into account that amitryptiline triggers both rls and plmd. Bupropion is an ad that is safe to use when suffering rls/plmd. In case amytriptiline is used as a neuropatic painkiller, you could try tramadol or Oxycodone instead.

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