Do you experience 'Painful legs and m... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)
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Do you experience 'Painful legs and moving toes' (PLMT) together with Raynaud's?

SRUKadmin
SRUKadminAdministrator
25 Replies

One of our community members has got in touch to ask whether anyone else experiences Raynaud's, alongside a condition called 'painful legs and moving toes' (PLMT). If you experience both of these please get in contact on here or via info@sruk.co.uk.

"Over four years ago I developed the syndrome called 'painful legs and moving toes' for which no cause or treatment has been found. The Raynaud's has been worse this year and the pain in my feet seems to be made worse by either being too cold or too hot. I wondered whether any of your Raynaud's sufferers have the legs and feet syndrome? I also wondered whether there could be any link with the collagen/systemic scleroderma aspect."

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Goldyukr

I do not have Raynaud's officially. I have both extremes where the blood vessels sometimes constrict and other times over dilate (erythromelalgia). The vascular specialist explained it as blood vessel instability and believes it's related to the nerves. I also have small fiber neuropathy, myositis and neuromuscular junction dysfunction (among other things). I have terrible pain in my legs every day. If I stand or if my legs are down for very long, my feet turn blue and the pain is much worse. Most of the day I must have them elevated but even then have pain. I do not have the movement in my toes mentioned though. I'm not sure if this could be similar or not. I am curious as I've never heard of that condition before.

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Twitchytoes

Like Goldyukr I have Raynaud’s secondary to small fibre neuropathy as part of Sjögren’s. My feet and legs are often very painful - in my case it’s worse when I’m standing or lying down rather than walking. I have orthostatic tremor so standing for longer than a minute at most is impossible but I can walk okay. It sounds similar to this PMLT which I’m afraid I’ve never heard of so can’t help. In my experience there are all sorts of names for similar or the same conditions and the one get diagnosed with depends which specialism we are coming from/ attending. Orthostatic tremor could be orthostic intolerance or autonomic dysfunction. Small fibre neuropathy could be another persons Fibromyalgia etc. So perhaps PMLT is same thing as restless legs syndrome or tremors and twitching as part of Small Fibre Neropathy?

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Hidden
Hidden

I may or may not have Raynauds but am now on Prozac which seems to have helped with my hands and now my feet are not so "frozen" but I have like a painful hardening of the front shin muscles of both legs. It gets so painful when I lay down I have to get up and walkabout. It is not so bad walking but tingly numb when I sit down. Both sides feel very hard and numb - so hard it almost like I've been in training hardening up my muscles. I now seem to have developed a pain on my right side lung or ribs at the side back. I do have gallstones but one consultant said he did not think this causing it as I should have pain horizontally around my torso. Left side is OK. I saw an orthopaedic surgeon and he doesn't think it is caused by my back although it is deteriorating with age. If I breath in I can feel it and it almost a muscular pain all the time but worse when I lay on my back.

I did have a nerve test which answered "spinal lesions" but no medical professional thinks this is the cause.

So I am rather a mystery but I go on Wed to see a General Surgeon - to re-look at gallstones theory and think ofanything else. I get very fatigued mid-afternoon along with painful middle back. (Idid have a protruding disc L4/5 I had operated on in 2008 and this really helped with lower back pain and jumpy legs and sciatica.)

I lay down in afternoon which relieves my middle back pain & I drop off, sometimes for 2-3 hours but in the end my hard, throbbing, shin muscles wake me and I have to get up. It have taken months and years to see the different specialist. I do have an inflamed trocanteric left hip which also causes pain and referred pain into bottom. The rheumy consultant signed me off after prescribing Prozac. So I've gone round and round different specialists over the last 5 years. I am on blood pressure pills and co-codamol for the pain.

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SherrySanford65
SherrySanford65
in reply to Hidden

I’m not sure I understand the Prozac for your condition. Prozac is an antidepressant. That’s Interesting. I’ll have to do research on that. So sorry you’re suffering. I hope you find some relief as you journey through this. God bless!

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JessicaEccles6

I was also put on Prozac for Raynaud's by Prof denton at the Royal free. It seems to help in some way with blood circulation

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Doogal

Prozac is prescribed for raynauds.

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bookworm

Hi my leg used to spasm, start jerking violently and then I fall on the floor.

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bella99

I do have raynauds, but had painful feet&toes before I was diagnosed. No body believed I had health issue, just told to deal with it (my favorite activity was running) I also worked in health industry in New Zealand and get no support from doctors I worked with. Still have toes&legs while on meds. Does anything help. Love the support from this site 💟

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Sylviamoore42

Hi everyone,

I was at rheumy this week and was diagnosed with limited schleroderma but the dr thinks that most of my pain is fibromyalgia .

Has anyone came across the same thing

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akshayv2

The plantar fascitis shoes have really given me pain relief from my year long battle with plantar fasciitis. I have are so comfortable and really helps my planter fastidious. Able to walk now even long distances without much pain. Will definitely be buying another pair from orthofeet! I would recommend them to anyone with any kind of foot pain. Wonderful support all the way around.

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honeybug
honeybug
in reply to akshayv2

Nice to know askshayv2

😊🌸🌿🦋

Will keep it in mind if needed and thanks for sharing.

😊🌸🌿🦋🤗💗😘

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Patatie50

Yes, I have Raynaud's. Also have Restless Legs alternating with night cramping in thighs, calfs, feet, toes. Miserable. When others are uncomfortable by heat, I am usually comfortable. Cold weather, hands (up to my wrists) turn purple, tip of nose purple, ears purple. Take Procardia XL daily. Never was told there is a connection between restless leg and Raynaud's. Is there a test for that? My primary care ignores my question about the restless leg/cramping issues. He tells me to get up and take a walk. Not helpful at all. Can take quinine, but I can't due to other serious health issues. I think everything is connected, but doctors who are specialists only know their field and don't look beyond to examine possible connections to other symptoms. Basically, I have found that as a Raynaud's patient, I'm pretty much on my own. Newly diagnosed Afib. problems along with prior stroke. My Coumadin levels bounce back and forth between being much too high (between 5-6) to crashing down to nothing (0-1). It is frustrating, but I swear everything is interconnected, yet can find NO ONE to do a complete work up. All records of my past history were destroyed (in my area of USA the norm is to destroy all records after 7 years...hospital records (blood tests, other tests, MRI, CT-scans). Physicians' offices follow the same practice. My problems first manifested more than 25 years ago. You can imagine my surprise when I found out my past history was destroyed. Had I known about that, I would have insisted on copies of records (a practice most doctors do NOT want to be bothered with.

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Cindyione

Yes! I have scleraderma,Raynauds disease and Rhumatoid arthritis and have a very hard time sleeping at night. I try and stay as warm as possible on feet and hands. So far I’m pretty lucky with scleraderma and not bothering much but arthritis is bad . Many surgeries on hands and feet! I pity anyone with these conditions and when I was diagnosed with each one the doctors said they all tend to kind of run together so by golly I ended up with them all. I believe it came from my fathers side since my grandmother had many of the same symptoms as I did. If you here of anything that will help your feet please share this here! Thank you!,

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Ncoff

Yes I do it disrupts my sleep my legs and feet feel tight

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Doogal

I have raynauds, also painful legs, please explain what you mean by moving toes - as I would like to understand before posting further. Thank you

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bearman

I have been diagnosed with limited scleraderma, luckily it doesn't cause insurmountable problems so far. I have had painful legs when walking for a couple of years. Spent a lot of time doing leg strengthening exercises which didn't have any effect. For the past couple of months I've been doing some simple Tai Chi and I think it's helping.

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cagol

Not sure if it's still useful to you to have a reply to this after 9 months, but yes I have RP and also restless legs (and a variety of other symptoms which I am waiting to develop into something which will interest my local rheumatology dept!!). I have to admit that it didn't occur to me that the legs could be related to the RP. The leg symptoms are really odd - I feel like I just have to move my legs and can't sit still. The movements are quite sudden and jerky and must annoy anyone sharing a sofa with me. Like all of my symptoms except the Raynaud's, it comes and goes randomly - bad for a few weeks or months then remission for a while. Hope that helps...if anything, it's always nice to know that someone else is experiencing something similar :-)

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stemie

Admin re PLMT syndrome

I am fairly new to HealthUnlocked (joined Raynaud’s, Heart and ITP communities).

I noticed a pinned post from you drawing attention to PLMT syndrome. I have the 2 main symptoms but had not really considered them before as I have other, much more serious medical problems.

I haven’t got used to the system yet, and I wonder if there is any significance in your post at this time?

I will tell my GP about this potential medical problem next time I see him.

Many thanks

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Toecrazy

I was diagnosed with Painful Legs Moving Toes (PLMT) less than a year ago, and, just today, with Raynaud’s. I have had carpal tunnel surgery and trigger finger surgery during this time, and other nerve problems. It’s painful, but, worse than anything else, extremely frustrating to have to endure it constantly!

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honeybug

SRUKadmin

Thank you for contacting me.

Hi. Yes I have Raynauds Phenomenon. I also have multiple AI conditions.

I have restless leg syndrome and painful toes.

I have Ehlers Danlos Syndrome. Osteoarthritis Sjogrens Syndrome Inherited Erythromelalgia.

My paternal 8 Aunts all had Lupus. I have many of those symptoms but never went for diagnostics testing as at last count I have 60 diagnoses that started at birth and I just cannot withstand anymore prodding poking and blood draws MRIS CAT scans etc

My inherited Erythromelalgia combined with my RP are cyclic in that which ever one starts the other follows in flares. My feet/body are constantly freezing and burning up. The IEM really became a problem age 19. I’ll soon be 68 and at this age the progression holds me imprisioned to them. I can’t take the heat or the cold. In the Winter when I could sleep in my bed I used to sleep under 2 sheets and in short summer pjs. In the Summer I have to have the air conditioning on for multiple overlapping conditions my IEM HBP and Mitral Valve Prolapse. I haven’t been tested for scleroderma but I know there is collagen destruction in my OA and my Ehlers Danlos Syndrome.

I’m not sure if I helped or confused you.

I’m willing to answer what questions I can. Feel free to chat anytime if you think I might be useful to you.

Thanks for asking and allowing me to answer

Best wishes. Take care.

EJ. xx

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Toecrazy

The best expert in the world on PLMT is Dr. Anhar Hassan, a neurologist at Mayo Clinic in Rochester, MN. She has authored the largest and most updated study on PLMT, based on 76 patients Mayo clinic has seen in the last 20 years (since the article was published). We are a very rare breed indeed! However, the chances of treatment success are not very promising. They don’t know much about it yet. So far, all oral medications I have tried have been useless. I received an initial Botox shot in my right foot a couple of months ago, and hasn’t helped much, but it was a low dose. I’ll be getting a second, stronger dose at the beginning of April, and hope that will reduce my pain and frustration.

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Hidden
Hidden

Yes but not sure what you mean by moving toes. Mine intermittently go numb and can’t spread toes apart and same with fingers . Is this what you mean they also get painful then bend sideways

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Kimi9

I have Raynaud's and also suffer from painful legs, along the shin. I also experience night cramps, and severe pain which wakes me up most nights

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marie5454

I have raynauds and suffer cramps in shin, feet, hands, the pain is awful and have to walk around in the middle of the night sometimes for a good 25mins to get any relief!

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