Jittery muscles

[carolBF]

Morning All

Hope everyone is well? Can anyone suggest anything to help.

I have been off Steroids for a week now having tapered slowly , my hips and thighs are a little sore but much better then they have been in months.

I have a Underactive thyroid and take 75mg Levothyroxine and have type 2 diabetes, my blood sugar is under control with diet.

Since stopping steroids I cannot sleep, my mind seems really alert even when I stay up till midnight, when I go to bed all my muscles feel jittery and even move a little by themselves, the only other thing I notice is my eye balls won’t relax when I try and sleep, in fact this seems to happen in the day.

I get tired between 10pm and 12pm but when I go to bed my body feels like it’s not ready. I am fully awake every 45-90 minutes trying to find a comfortable position to get back to sleep, around 3.30am I can sleep for around 3-4 hour solid.

And I am having less than 1200 calories a day and I am slowly putting on weight. Is everything connected? I have not been tired in the day this last week off steroids

[DorsetLady PMRGCAuk volunteer]

Hi,

This seems p to have been going on for some time - post 3 months ago referred to similar issues.,..SnazzyD gave good advice then...

...and you haven’t tapered slowly in most people’s opinion!

I think you need to speak to GP, are you sure it’s not related to thyroid?

[carolBF in reply to DorsetLady]

I did appreciate SnazzyD’s advice.

I think i may need a blood test for my thyroid but it is hard to get one from my doctor. Recently I feel a burden to my doctor, she seem to not believe the pain I am in sometimes because my blood tests are mostly good, I have a raised ESR level of 40 but she just said that I have had a raised level for 15 years so no change there.

[PMRpro Ambassador in reply to carolBF]

No chance of a different one?

[DorsetLady PMRGCAuk volunteer in reply to carolBF]

I know it’s difficult with GPs at the moment, and yours doesn’t seem very sympathetic - as PMRpro asks - any chance of seeing another one in the practice? There’s obviously something amiss which needs addressing.

[Lollybygolly in reply to carolBF]

Ooh I’d change my doctor if there was even a whisper of invalidation of my reporting. Covid has been a strain fir them but it’s a sacred rule that You are not a Nuisance, Blood tests are the only diagnostic they have as you’re not being seen. I would assert my right for whatever will alleviate your pain with no reference to your doctors skepticism or compassion fatigue. Take very very good care of yourself meanwhile. Best wishes.

[PMRpro Ambassador]

Pred can interfere with TSH levels - is your levothyroxine dose right for life without pred or are you being effectively hyperthyroid? Though that doesn't fit with weight gain ...

[carolBF in reply to PMRpro]

Thats what I think that my levothyroxine maybe too high,

I only eat between 10am and 6pm

Light meal for lunch (wrap small chicken salad) and protein and vegetables for dinner, the only thing I eat i between is oranges. And I drink 1-2 litres of water a day

[PMRpro Ambassador in reply to carolBF]

You do know that you can gain weight if you don't eat enough? If you are too much below what your body needs it will go into starvation mode and you can gain weight.

[SnazzyD in reply to carolBF]

If I didn’t eat properly with low adrenal function, my body went into a sort of shock. Perhaps your fasting window is a bit too wide for your needs now. I also needed to add in a little carb and salt otherwise I felt dreadful. Low adrenal function can cause loss of salt and if you are drinking plenty, that will exaggerate it if is not balanced. Not saying it isn’t the other suggestions, just the easy fix things I discovered.

[carolBF in reply to SnazzyD]

Thank you everyone. I am in isolation again this week therefore I think I will write down what I eat,

I definitely crave salt which only started When my PMR started.

I can cope with anything in the day as long as I can get some sleep.

[SnazzyD in reply to carolBF]

Do you take salt then? If so, perhaps your potassium needs upping by eating a lot more potassium rich foods. If you are low in potassium it can make the muscles ‘irritable’ amongst other things. Are you taking any other combined supplements or teas that may be having a stimulant effect? I have become over sensitive to high cocoa which will keep me awake with that not being able to close my eyes behind my eyelids feeling like with caffeine.

[carolBF in reply to SnazzyD]

How do I know how much I need of carbs and salt?

[HeronNS in reply to carolBF]

Your doctor can run blood tests to check your electrolyte levels. If you eat a low salt diet despite craving salt you may even have a sodium deficiency. Turns out I did because I'd eaten low salt for many years and about three years into pred a passing acquaintance mentioned my symptoms could be caused by my needing more salt. Turns out she was right and several symptoms (dismissed by my doctor although things like a fluttery heartbeat worried me) also disappeared and have not returned. I have had several electrolytes checked since then and my sodium level is normal despite my now heavily salting my morning eggs and using salt where in the past I never did.

On the other hand I have read several times in the forums that pred can cause high sodum. So a test is a good idea. For the record, the symptoms I remember included the skippy heartbeat, legs which ached so much at night they'd wake me up, skin which didn't rebound quickly after the "pinch" test, and waking with a new headache. It was the morning headache which made my acquaintance suggest that I try eating salt - just a few grains at a time. If it tasted good I should keep doing that until it no longer tasted good. The next morning, no morning headache, and the other symptoms (I know I haven't remembered them all) also went away and have not returned. They actually started before I was treated for PMR and continued to worsen until the salt thing was suggested to me.

The secret to knowing if you need salt? The taste. If you take a little salt on your fingertip and taste it and it tastes good, you probably need it. I still remember the moment I'd had enough. Suddenly the salt was vile! But this won't work with salty food, just with the plain salt, eaten a few grains at a time. It actually took me doing this at suppertime two days in succession to reach that point of "yuck"!

[carolBF in reply to HeronNS]

Thank you that’s a great suggestion will try that tonight. I do have fluttery heartbeat however my fitbit say my heart rate is 79- 82 resting . I am down for a phone call with my doctors for next Monday to get my thyroid checked

[HeronNS in reply to carolBF]

Yes, you definitely need that done - your doctor should have been on the ball monitoring thyroid levels all along.

[SheffieldJane in reply to HeronNS]

That makes sense. I’d forgotten about your experience with salt. It is bound to be something that’s out of balance.

[Kendrew in reply to HeronNS]

Wow! Wow! Wow! That's been an utter revelation to me......and made me rethink a few things! I've recently had to increase my pred from 2.5mg up to 10mg for return of aches and pains following a return to work. (Off work again now)10mg still not fully got things under control ....although continuing to improve slowly and was wondering why. Last Friday my husband had a take out dinner of scampi and fries from our local restaurant, and I finished off the chips (as a treat!) There were a lot of salt flakes on the chips which I consumed with relish. Next morning, the aches and pains were significantly reduced! Any connection or a simple coincidence???

[PMRpro Ambassador in reply to Kendrew]

If it was salt flakes they will have been the same as Heron's plain salt, as opposed to being part of the food preparation process. Worth trying some salt for a week or so - it isn't as bad for BP as it has been painted over the years it seems.

[Kendrew in reply to PMRpro]

Thankyou. Definitely going to give that a go and research it some more.

[HeronNS in reply to Kendrew]

If you find anything I would be interested to hear. I only know this because of a chance meeting, and my own experience. The person only told me more salt would help my morning headaches. It was a pleasant surprise to find the other issues, apparently unrelated, had also cleared up. The skippy heartbeat had worried me for a while; my former doctor had even sent me for some sort of heart check (nothing found). So it's all anecdotal.

I have to say if you look up salt they are still recommending people cut back their salt intake. BUT if you don't eat much prepared food and cook with little salt and don't add any salt at the table (me, especially after I cut carbs when starting pred) you can get too low. I used an internet tool, deliberately overestimated and discovered that my daily intake was under 1000 mg. Even the most anti-salt proponents say we need more like 2000 (and more may be better). Even with what I do now I may not getting the optimum amount.

I think there was a tv program which described sugar as being the evil white crystal, not salt!

[PMRpro Ambassador in reply to HeronNS]

What calculator did you use? I can't find one that works!!! Cancel that - found one from Uni of Toronto eventually! Mine was 700mg it reckoned ...

[HeronNS in reply to PMRpro]

Oh gosh, I have no idea. I just looked it up and there were a few so I chose one which seemed to come from a decent site. I also checked packaged products (like nuts, cheese) with labelling to see if what the calculator told me matched the packages and it did, so I felt that demonstrated some trustworthiness. This would have been in 2018.

[HeronNS in reply to PMRpro]

I found one on this page but my virus protector is blocking it saying its certificate has expired. I rather think this may have been it, though (more than two years ago): utoronto.ca/news/how-much-s...

[PMRpro Ambassador in reply to HeronNS]

I used it - took the risk!

[HeronNS in reply to PMRpro]

I just used the other calculators on the website, and that was kind of interesting too.

[PMRpro Ambassador in reply to HeronNS]

Go on then?????????

[HeronNS in reply to PMRpro]

Heart age 58, life expectancy 91, and "age" 67 - my chronological age is 73.... Probably because I don't smoke and don't have the co-morbidities mentioned. I was surprised I did as well as I did because I hardly exercise at all these days.

[HeronNS in reply to PMRpro]

Looking at the description on the website (I am not risking opening that calculator) I'm not sure. I definitely remember going through an average day and entering figures for the sodium in every food I ate, it wasn't a generalized "guess" as I think the other calculators on the website are that I just used for fun. I then got a total which was not much more than 900 mg. for that typical day.

[Kendrew in reply to HeronNS]

I have also had issues with palpitations.....suffered from them before PMR but became significantly worse after starting pred. Had a small ECG monitor attached th my chest for 2wks recording every rhythm and twitch!! Just ectopic beats and not dangerous. Everything else checked out ok. So pred was determined as culprit.Like you, I eat lots of fresh cooked food and no processed or 'prepared' food. I don't ever add salt to my cooking or baking and up to now have avoided it......looks like I may need to rethink that!

I'll definitely let you know if I find out anything significant.

[Lollybygolly in reply to HeronNS]

I read this whilst nursing a headache and general malaise: so I took a few grains of rock salt and tried it. Wow. Just wow. Avoiding salt must have left me deficient because I instantly felt better... just a few grains of salt. Thank you!!

[SheffieldJane]

I have had Graves’ disease since 1984. It was successfully treated with radio-iodine and yet something about PMR seems to have woken the disease up. Definitely have your thyroid levels checked just in case. Eating little and gaining weight is characteristic of Hypothyroidism. Failing that. I found that 10 mgs of Amitriptyline, taken an hour before sleep allowed my body to be comfortable enough to sleep. Having been diagnosed with GCA and experiencing a similar high alert, uncomfortable sensation at bedtime, I have asked for it to be prescribed again. Try to go for walks Carol, apologies if you do already. It seems to calm the body.

[carolBF in reply to SheffieldJane]

Last night I had I little salt before bed plus walked around my garden for 30 mins because my legs felt restless. When I went to bed I was less restless until 4pm then couldn’t sleep at all after that. It was nice to get off to sleep. I still woke 4 times between 12-4 for the toilet, I used to get once a night before pred s then twice while taking them now 4-5 times, I don’t go like that all day

Thank you for your advice everyone. Going to have a little salt tonight, to be fair it was nice on my food but not so nice dipping my finger in.

[SheffieldJane]

You may have a urine infection, that is a lot of getting up for the loo, even for us.