Hi, I wonder if anyone experiences a weak sensation like low level pins and needles or restless legs after exertion? It is currently keeping me awake following a demanding journey, unpacking and washing. I am used to PMR pain after over-doing things but this is weirdly unpleasant. Does anything help? I took no extra Pred. For the whole holiday experience, is it indicated now? It is a horrible sensation.
PS. Still can’t join in without signing in from each email I get. I can access from the list on the site once in though.
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SheffieldJane
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That does sound unpleasant and it could possibly just be a consequence of your extra exertion recently - but of course like you i'd want to know 'why' this is happening. It does sound kind of 'circulatory' although there are things like neuralgia and myalgia which could be implicated if it keeps on happening. Once again I can profess no expertise in these things but having had the side effect of myalgia recently i know how awful this sort of 'similar' stuff can be and I sympathise. I'm sure others will be of more help with the specifics of this - but in the interim I think a bit of rest might be in order (if you can manage it) a warm bath (I like it quite 'hot') before bed can help circulation, relaxation etc. Sometimes it DOES feel a bit like 'one damn thing after another'so I hope you get some answers (you are so supportive with others here) and feel much better soon !
Thank you Rimmy. It helps to share weird symptoms. I took an extra mg of Pred. My subsequent night was quite nightmare-ish with weird dreams and oxygen starvation symptoms. I dread going to the doctor, nothing helpful is ever said, complain and Methotrexate is brandished. Didn’t expect the last lap to be hard.
Yes I really understand that hesitation to go back to a doctor with anything that seems even vaguely 'nebulous' - well not in our eyes of course - but apparently too frequently in theirs. If our symptoms don't rather simply 'fit' their established 'categories' then they feel at sea - either dismissing our perceptions and experiences as something shall I say akin to 'psychological' or suggest tests for things which don't seem quite 'right' - many of which we'd rather NOT have to endure. I felt similarly frustrated recently when I had my first (after 18 mths) GCA 'flare' and had to up my dose and subsequently promptly 'got' myalgia which then either facilitated or exacerbated the Achilles damage I had inadvertently done. I had a full week of interrupted sleep with night cramps which lasted hours and were excruciating to say the least - oxycodone didn't even help ... Anyway I don't mean to ramble on about 'moi' here but I can tell you tapering my dose down is resulting in an improvement for me as the myalgia is gradually fading and I am getting real sleep. I am not suggesting THIS is your problem but muscle weakness IS a side effect and quite a common one. This in turn can lead to additional pain from any damage we do while probably over-exerting ourselves - and that is 'too easy' sometimes to do. Then again the issue of nerve related pain may be worth considering. Probably worth fronting up to the doctor again though even if you have to prompt some of the possibilities and decide which way to go - after all you need to extract from THEM what YOU most 'need' and you are a smart woman so it may be the best thing to do next ... Hope it resolves before then though !
Thanks for your useful and empathic reply as ever. I think our doctors have lost the art of observing the patient and really listening. Loads of us took ages to be diagnosed, probably because the blood tests aren’t a true indicator half the time. I may have picked up a bug in the stale air of the plane, I’ve felt quite viral today. A poor baby screamed all the way from Mallorca to Manchester and I could just tell that the poor mite was ill.
I turned my ankle on the stairs and I ‘ve been limping all day, I can relate to your Achilles problem. Muscles are like jelly.
I had a phone call from my pharmacist today and had the first ever in depth discussion about my meds and side effects etc. It was so useful ( poor man). He said that they are taking over this function from the GPs in the U.K. This is great, because my GP never did it! I am so glad that you are enjoying the blessed relief of real sleep!
My father was saying when he was training to be a doctor they acted much more like detectives. They were taught to smell things such as puss which could give information or even confirmation of illnesses. He said it really was very helpful in diagnoses. At one time doctors used to taste patients’ urine to test for diabetes. Can you imagine that happening nowadays? I suppose they have started to use dogs in smelling for illness.
'I think our doctors have lost the art of observing the patient and really listening' - I agree - many doctors (not all of course- I am fortunate with my regular GP although he is relatively 'young') seem distracted, too busy, too focused on their computer screens, disinterested even and/or 'judgmental' of our own perceptions etc etc - which is of course not good. In the end we have to 'shop around' and try to find a doctor who has the necessary capacities to assist us - a medical degree is not enough ! My doctor told me when he was doing his training there was another (senior) doctor who would virtually leave a trail of destruction after his rounds and another doctor would have to run around after him conciliating patients and trying to prevent possible complaints - ##@@!!!!???
Jane I get it too and I am fed up with trying to find out what it is. I reckon, and I am not medically educated, it’s muscles sort of fizzing from exercise and just some sort of reaction to exercise. I knyit sounds stupid but I have almost given up worrying about it. I would urge you to be sensible though and find out what it is before you get dismissive like me. I think I have a bit of varicose veins btw but you need to have nerve conductor testing. Xxx
Have never heard of nerve conductor testing. It’s funny your mentioning fizzing, because that’s exactly the description I used to a friend to describe the sensations I am feeling. I can’t say mine was from exercise, but the sensation ran through my body, alongside other aches, pains and ‘stabbings’. The restlessness kept me awake until 4.30am and woke up at 6.30. It all seems so complex, and especially when you have other conditions running alongside!
I haven’t heard of that either! I have the monthly blood tests to see if my levels have gone up. Otherwise I only have blood tests if I have gone in with some complaint or other. I should ask for printouts, because I never remember what they were for!
It is unlikely you will need an EMG test, it is not a blood test. My surgery are now offering us on-line test results, so I can even get graphs shown on the screen showing results over a period of time. In the past I used to ask for printout from reception. Perhaps your surgery offers on-line facilities too. I had to take my passport to the surgery so I could prove who I was and they could set up my sign on. The fact that I am on first name terms with them did not seem to count.
I will ask for information when I go for my blood test. So difficult to see a doctor these days, and barely time to ask questions other than what you went in for, I find.
Hi Jane, have had the restless legs but don't know why as I hadn't been doing anything untoward at the time. The problem is rest doesn't help at all, mine did eventually go so didn't go to the GP but hubby has them a lot and was given medication for his but it didn't seem to be that effective - eventually went on it's own. Can only sympathise as is very uncomfortable, I used to take paracetamol to help me sleep with it. Probably worth a GP visit.
I felt exactly the same Jane, all the pain and strange sensations, when I returned from holiday recently, and am paying for it now. When I was away I was out and about every day, (Whitby, Scarborough and Beverley- not some sun drenched beach, relaxing!) I stopped thinking about PMR and did what I always do, but flopping a couple of times. For me it was live now, pay later, and haven’t felt well ever since. I knew I shouldn’t ignore the signs, but being away I couldn’t accept the ‘new’PMR me. I’m sure you’re more sensible than me, but airports and travel, lifting bags etc can’t help, even without this.
Thankyou for the valuable advice you gave me when I was first diagnosed. Brenda
You are welcome! I know you pass it on. I learned everything from PMRPro and Dorset Lady and Kate Gilbert’s book in the early days. I did everything bar clambering over a rocky beach and having too much wine over three card brag. I’m still wrecked.
Sorry to hear you are having troubles on vacation. I agree it does seem to be one thing after another. We are always trying to figure something out. I have vaguely felt restless legs but not after exertion as I don't exert much haha. Seems to pass. It was a fantasy to think at lower levels I would be so much better. I am better of course, just not as well as I had "hoped". Look at your restful view and I will say a prayer for you to feel better❤️❤️
I think whilst our minds are occupied with exercise/holidays/travel / visitors etc our minds block out the strange symptoms we get. But come the quiet wee small hours or after the clearing up and you think .....ah.....rest.....everything twitches and you notice so much more.
I've just returned from a group weekend with 31 people in sports cars.....mine with a wheelchair on a bike rack......so many offers of help.......such embarrassment .......but did manage 2 dances each night with Hubbie. Buffets were worst nightmare.....I tried to order from waiter to save Hubbie double the journeys. So this last morning he is ill with sickness.....no pusher for my chair......must get breakfast to take Pred and antibiotics......struggled on 2 crutches .......had to ask for help from friend to collect water for tablets and ordered from waitress. Ask another friend to take luggage to car by "out" time of 10am. Settle Hubbie for a sleep on a beach chair near the WCs for a nap. Wake him to drive (I'm not allowed to drive MG at present) to ferry. Get aboard and breathe a sigh of relief......then can't get off the extra low Ladies WC seat for 5 mins.......manage that only to fall over the threshold!!
So now, at home, rest rest rest and more rest. Hubbie asleep on bed.
I do get similar symptoms, but my back is very unstable due to long ago surgery, so I often get pain and wierd symptoms in my legs. The PMR seemed to really bring it on! The pred did help to settle it down but I still get those pins and needles sensations in my legs and feet if I overdo it. It is all so complicated. I have also recently started getting a similar, but as someone else described it as a fizzing sensation in my chest which goes right up into my jaw after exertion, it goes fairly quickly if I rest whereas the leg thing comes on when I rest.
That potentially sounds like an arrythmia and you need to get it checked. It could be due to pred but it could also be due to the autoimmune part of PMR/GCA. Either way, arrythmias need management to reduce the risk of other nasties.
Thanks PMRpro. I will get it checked. I did have a sneaky feeling it was something I ought to get checked but I was being a bit of an ostrich. Like others I hate going to the doctor;s now!!
Hi Sheffield Jane I have had almost non stop pins and needles type pain in both hands. Really hurts so know what you mean. Have put myself back on 5 mg but am seeing doctor on Friday so will mention it. Hope you feel better soon, yes a bath does help for a while. 😁
I still get restless limbs after exertion and it's been 18 months since I stopped prednisone. I find what helps me is 10mg. of CBD taken 3 hrs. before bed. It seems to relax my body and help me sleep better.
I’ve have a sort of fizzing pins and needles in my feet and more specifically my toes most of the time. I don’t find it troublesome though. GP said nothing to worry about. However I’m seeing rheumatologist for the first time next week and it’s on my list of symptoms to show him.
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