Muscle Spasms

[2Yellowdaffodilsx]

Hi everyone diag Polymyalgia Sept '18 mainly affected thigh muscles which recently wake me up 6am with very painful spasms. Up & down with Predisolone now tapering very slowly 7mg to 6.5mg. Need sticks etc for walking . Recent Blood test normal first time Bone Scan normal. Any ideas please you lovely bloggers! Too much chocolate maybe! It is nearly Christmas! Thank you xx

[SnazzyD]

Hello, I’m sure others will reply but just looking at the basics first, do you supplement magnesium and eat potassium rich foods? Also, have you restricted sodium while taking Pred? What blood tests did you have? Sorry, more questions. What exactly is making you need to use sticks? Does it happen every night? Also, when did it start happening? Lastly, is your PMR under control?

[2Yellowdaffodilsx in reply to SnazzyD]

Hi SnazzyD thankyou I have supplements but not Magnesium at the mo so I'll get some Don't have much salt . Blood tests Esr & Crp normal first time. Needed sticks long time for thigh muscles very stiff. Can get upstairs & steps slowly . See excellent Chiropractor every 4wks & Homeopath. Spasms started last wk 6am mostly.

Never have been sure PMR under control.. changed GP as she wanted quick tapering.

Have a gd diet lots fish etc Best foods ?? Huge thanks for replying. Appreciate

[SheffieldJane]

I wonder if a magnesium supplement would ease this? Do report this symptom to your doctor, it is sufficiently unusual and concerning.

[2Yellowdaffodilsx in reply to SheffieldJane]

Hi Sheffield Jane Thankyou so much . I used to take Magnesium so better get some !! I'll try GP on Monday. Doing so well then a setback! Take care enjoy your w/e.

2yellowdaffodilsx

[DorsetLady PMRGCAuk volunteer]

Hi,

See you posted a couple of months ago about a couple of things -

a flare which I advised you on…did you increase as suggested, and did it works?

Plus you did mention the about muscle cramps and homeopathic remedies- guess they didn't work?

Main question would be same as SnazzyD - PMR controlled? Doesn’t sound like it.

[2Yellowdaffodilsx in reply to DorsetLady]

Hello again ! You soon found me! I did increase to 9mg & trying to come down slowly since. Forgotten I mentioned muscle cramps they subsided for a while but now at 6am. Weird! How does one control PMR?Gosh that wld be bliss! Yet blood test was gd in Esr & Crp. Homeopath trained by the well known Helen Johnson 15yrs now. I cld ask her again & get Magnesium tabs.

Thankyou so much

[DorsetLady PMRGCAuk volunteer in reply to 2Yellowdaffodilsx]

“How does one control PMR?”…

Not really rocket science, simple answer by taking the correct level that your illness needs….

although you did say in a previous post that you never really felt on top of things even from the beginning, so maybe you have something else going on as well as PMR? Do you? See you mentioned diabetes in previous post.

Think you need a good discussion with GP to cover all options.

I know you’re not new, but maybe have a read through this link, might rings some bells on what you are doing or not doing -

healthunlocked.com/pmrgcauk...

[2Yellowdaffodilsx in reply to DorsetLady]

Thankyou Dorset Lady for your understanding. Homeopath found me 100% healthy ! Just inflammation showed up. I'll check your info thankyouEveryone has commented on how well I look! Frustrating! Im busy all day out most days drive meet friends . Takes big effort! Battle on! Hope spasms calm down but I'll def get Magnesuum again

Take care

[PMRpro Ambassador in reply to 2Yellowdaffodilsx]

"Homeopath found me 100% healthy ! Just inflammation showed up"

That in itself is a contradiction - if there is inflammation, then you are not 100% healthy,

[2Yellowdaffodilsx in reply to PMRpro]

Aye true!! But I feel so good apart from legs!! Sleep well til 6am! Thankyou so much for your time. I'll take note of all replies. Amazing group of friends!! Thank you xx

[DorsetLady PMRGCAuk volunteer in reply to 2Yellowdaffodilsx]

Think you have answered the issue - busy all day! Need to pace yourself better / there’s a link in my info post I attached …,

[2Yellowdaffodilsx in reply to DorsetLady]

Oops yes maybe !! But trips are planned & wheelchair s at most gdn centre s so I can shop & whizz round! Thanks for link & your time to reply to me. Only blog when I have real issues. Gt service with a smile! Don't faint a quiet restful w/e! Might help!! Enjoy yours. (73yrs)

[2Yellowdaffodilsx in reply to DorsetLady]

Sorry me again bit blase these days, I have been taking combo Magensium & Calcium 100mg each . Found my Magn spray for thighs start today & so maybe separate Magn higher dose ? If one upped Steroids how far? Sadly they don't seem to make much difference to me..been up couple times so moving slowly 7mg to 6.5mg over a month.. hope muscles follow! Thankyou so much. Its wonderful to be able to get instant advice it really is.. xx

[DorsetLady PMRGCAuk volunteer in reply to 2Yellowdaffodilsx]

Can't really help on that, didn't take Magnesium regularly.... there may be something in the FAQs... or start with this post, and then look for related posts -

healthunlocked.com/pmrgcauk...

[2Yellowdaffodilsx in reply to DorsetLady]

Thanku again lots helpful posts so I'll try a few tips. I do enjoy bananas nuts etc..Love 2Daffodilsxx

[2Yellowdaffodilsx in reply to DorsetLady]

Good morning Dorset lady. I think I've solved the spasms. Need to drink more. I had a Funeral to go to on Friday certainly had much less than usual so added extra herbal teas yesterday. Only tiny one at 7am! So must persevere with more fluids. Fingers X! Thank you. Happy Sunday! 2Yellowdaffodilsx

[mgrogers99 in reply to 2Yellowdaffodilsx]

I was told to take magnesium 1000 mg at night and it has helped with thigh pain that was cramp like.

[2Yellowdaffodilsx in reply to mgrogers99]

Well that's interesting mgrogers99, thankyou. My tabs are only 100mg Magnesium plus 100mg Calcium . Think higher Magnesium separately worth trying. Tho I do eat bananas , nuts etc.Thank you for your input. Appreciate.

Have a lovely day 2Yellowdaffodilsx

[PMRpro Ambassador in reply to 2Yellowdaffodilsx]

Whatever you do - don't take more of the combined tablets if you also take calcium and vit D supplements with the pred - too much calcium is not a good idea! Mind you - I imagine 6 per day would work out a bit expensive in the long run!

[2Yellowdaffodilsx in reply to PMRpro]

Ah ok appreciate the tips which I'll follow! Huge thanks

[mgrogers99 in reply to 2Yellowdaffodilsx]

I do not take any calcium and my labs for calcium are fine!

[PMRpro Ambassador in reply to mgrogers99]

That's OK then - people have been known to up their calcium/vit D supplements to get more vit D, Not a good idea at all!

[2Yellowdaffodilsx in reply to PMRpro]

Aye agree on that def Thank you

[mgrogers99 in reply to PMRpro]

Right....that's a reason for getting separate meds instead of the combination ones.

[2Yellowdaffodilsx in reply to mgrogers99]

Well done! Think Magnesium on its own probably better. Thankyou have a nice day 2Yellowdaffodiksx

[PMRpro Ambassador]

Are the thigh problems really muscular in origin? Could it be trochanteric bursitis?

We have had homeopathic practitioners on the forum in the past, as patients. And I know 2 or 3 who all have said that while homeopathy can help deal with the pred adverse effects, it won't deal with the PMR/GCA itself and pred at the right dose is needed. One very experienced practitioner said she needed remedies at levels they are not allowed to use for patients. I'm not dissing homeopthy at all - it has its place. But not for something like PMR or GCA.

[2Yellowdaffodilsx in reply to PMRpro]

Hi thankyou so much yes def feels like muscles top thighs to knee going into painful spasms . Probably right re Homeopathy which has been brilliant for many things.. guess I'd better contact GP on Monday for advice. Not heard of trichanteric bursitis.

Huge thanks again xx

[Noosat]

Don't know your hsatory. this is mine Terrible pain in quad muscles, no sleep for 3 nights, diagnosed with PMR. On 40mg for 3 days then down to 20mg, left on my own, using very slow taper got down to 2.5mg, flared went up to 5mg. and now at 4mg. Like you my legs have suffered the most. down to slow walking, can go up and down stairs if there is a handrail and stair edges are slearly marked. Hope in 2 weeks to drop another .5mg. It has been a long 3 years

[2Yellowdaffodilsx in reply to Noosat]

Gosh Noosat we re very similar! PMR hit me in my thigh muscles end May '18 no idea what it was eventually saw GP Aug diag Sept 20mg Predisolone I think tapering ev since mostly on my own. Upped doses twice. Now real slow. .5mg a month. Use 2 sticks or triangle frame on wheels. Muscles v sensitive. Can go up steps holding on. I will look into heat pads , gt idea. Used hot water bottle til now..thankyou so much. Take care 2Yellowdaffodilsx

[Elle914]

So sorry for your struggle. I’m waking up with locked thighs from a difficult post-dental surgery flare. I don’t go anywhere without my trusty electric heating pad — and 20 minutes of my pad on the front and back of my thighs increases my mobility enough to get moving. I would have already taken 7 mg prednisone. Sort of old fashioned remedy, but works for me. Good luck and certainly consult your rheumy for increased dosages and other remedies.

[PMRpro Ambassador in reply to Elle914]

That is actually something we used to recommend when the forums first got going - taking pred early and settling down in bed for another couple of hours - AND using an electric blanket or hot water bottle before getting up. Then getting into a warm shower and stretching before you had a chance to tighten up again! I used to do aquafit in the years before I was offered pred and the best days were the ones where aquafit was early in the morning. I staggered there - but after the class could manage yoga or Pilates which improved things even more.

[2Yellowdaffodilsx in reply to PMRpro]

Thankyou PMRpro heat pads seem to be the in thing so I'll try ASAP. Gt idea. Hot showers a must first thing def helps mobility..Battle on . Gt replies today. Soo appreciate.. Happy Christmas 🎄 to all.2Yellowdaffodilsx

[2Yellowdaffodilsx in reply to Elle914]

Hi Elle914 I'm def going to look into heat pads. Tel appt with my Rheumy 21st Jan .Thank-you so much reply.. take care.

2Yellowdaffodilsx

[Q-owl]

Quinine works for me. GP prescribed and I only take occasionly when the cramps get annoyingly persistent.

[Fireleigh in reply to Q-owl]

Hi Q- owl, I get terrific cramp in thighs ( especially on right). Consulted the rheumatologist who could only suggest magnesium. If I’m out walking and it happens I have to stop. I didn’t know about Quinine. I think developing these cramps must be part of the muscle journey back to normal. It’s very slightly better than it was. I can walk quite quickly and without sticks now. I think doses above 5.5mg steroid Made me trembly. When I was first on a steroid inhaler same effect. Over 20 years I’ve adjusted to that. But not to the higher steroid doses needed for PMR so trembling has been an issue.

[2Yellowdaffodilsx in reply to Fireleigh]

Hi Fireleigh I do hope these spasms are a sign of healing!! We all wish! I'm 7mg going slowly to 6.5mg. Still need 2 sticks but only had PMR 3 1/2yrs. A way to go yet. Battle on

Have a gd day x

[Fireleigh in reply to 2Yellowdaffodilsx]

Thank you for your reply. I’ve had it four years. It would be nice to know signs of muscle healing, With PMR there’s so little information. We do know it’s not good to vegetate on the sofa but which activities help the muscles and which are unsafe?

[PMRpro Ambassador in reply to Fireleigh]

Walking is as good as anything, aquaerobics is also good, in a warm pool, cool water may be uncomfortable.

[Q-owl in reply to Fireleigh]

There is a bit of natural quinine in some tonics as in G&T.

[Nextoneplease in reply to Q-owl]

I was advised by my GP to drink tonic water for muscle cramps - then advised not to do so by dentist, who picks up on its acidic quality being bad for teeth!!! So I compromise on one glass a day, a good magnesium supplement and lots of plain water 🧘‍♀️x

[2Yellowdaffodilsx in reply to Nextoneplease]

Interesting advice Nextoneplease! Thank you. Agree drink enough water &

adequate Magnesium which I'm working on. It is def improving thank gdness. Take care 🌲

[PMRpro Ambassador in reply to Q-owl]

A bit being the operative word - nowhere near enough these days to have any effect! Greatly outweighed in benefit by the sugar and carbon dioxide that makes it acidic.

health.harvard.edu/newslett...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Not keen on their advice - “don’t mix gin with that tonic”!🤣😂

[PMRpro Ambassador in reply to DorsetLady]

No me neither - what's the point of tonic without gin?

[pmr_nikola]

besides low magnesium, I found that if I overdo things or use muscles in a different way ( say walking uphill if you are not used to ) may cause spasms. Warm bath and gentle stretches help.

[2Yellowdaffodilsx in reply to pmr_nikola]

Hello nikola you re so right! I have to be so careful which way I turn & we have 6 biggish steps a steepish path then 5 little steps to our cars. It's very challenging! I hold onto the rail firmly! A cold am & this defeats me so hub brings my car round the front! Have Magn spray so back to that & new tabs. Hot showers good. Take care & thankyou

2Yellowdaffodilsx