Anyone else developed muscle cramps in arm with PMR.?

[Runrig01]

Having reached the lowest I've ever been on Prednisolone, 7mgs, I have developed continuous cramp like pain in right upper arm and pins and needles in left arm associated with using arm. Does anyone else have this? I have for the last year had GCA type symptoms which are being investigated, but Rheumy still wants me to continue reduction. Bloods are always normal, temple biopsy negative.

[PMRpro Ambassador]

That was one of the problems I had at the beginning of PMR - it was effectively claudication because it started after doing repeated movements or even when sitting holding a phone to my ear, a sustained position. Even if your rheumy won't accept a GCA diagnosis - will they accept one of PMR?

[Runrig01 in reply to PMRpro]

Thanks for the prompt reply. I was diagnosed with Atypical PMR 17 months ago. My previous Rheumy would not even investigate GCA symptoms and spent 7 months saying it was probably anxiety or my menopause, I am very laid back person and tend not to worry. I eventually changed Rheumy who did temple biopsy and MRI scan which were done 10 months after starting steroids. The stumbling block is I'm 48 and bloods are always normal. Current Rheumy accepts GCA is possible with normal bloods, but wants to find the inflammation. I have seen a neurologist who agrees it is possible temple arteritis, but would find it extraordinary if it was. He referred me to ENT re tongue pain, spasms and discolouration. I also have pulsatile tinnitus in left ear, burning in both temples, pain above and behind both ears with tenderness, and jaw cramping when chewing food that requires effort. My husband finds it impossible to understand how if they accept I have PMR and am at risk of GCA that the most likely cause of all these symptoms is GCA. I have also been referred to dermatology to see if they can explain the discoloured patches that appear on the tongue when I'm kept awake all night with the spasms. Sorry for the length of this message. Cheers Runrig x

[dimas62 in reply to Runrig01]

I had nearly the same symptoms as you -scalp tenderness, jaw ear and tongue pain- as well as the shoulder and hip pains etc- and normal bloods but even though only 51 both doctor and rheumy agreed it was GCA / PMR and immediately started me on 40 mg pred, so guess I was 'lucky' As to the cramp / pins and needles, it could be some sort of tendonitis. Having had 3 operations to remove calcium deposits from my shoulders I thought I had cracked that particular problem but have now been told that the steroids can weaken the tendons!! Such fun this illness - always something else around the corner...

[Runrig01 in reply to dimas62]

Hi Dimas62, did you have temple biopsy to confirm or MRI? I notice you had tongue pain, which I'm told is unusual. Did you suffer with twitching of your tongue at night or purple patches and clots appearing? I have a persistent burning pain in tongue, but it's at night when it comes to life and disturbs my sleep, that I struggle to cope with. I can be awake all night then at work doing a 12.5hr shift. It seems medics don't like putting their name to the unusual. I'm glad you have a GP and Rheumy who treat the symptoms. Take Care Runrig x

[dimas62 in reply to Runrig01]

Never had a biopsy because there was a misunderstanding over the meaning of an urgent referral - Rheumy wanted it done within a couple of days, appointment clerk decided 2 weeks would be soon enough..... In the meantime I had disturbed vision so was put on 40mg pred, which made such a difference within 48 hrs the Rheumy was certain it was GCA as well as PMR. My tongue pain was more of a stabbing pain - this has more or less cleared up but have suffered from oral thrush since taking pred. Haven't been offered any scans - will mention this to my GP this week. Hope you manage to persuade your medics to look further. x

[PMRpro Ambassador in reply to Runrig01]

What I was getting at was that if they accept you have PMR then they need to do a scan - a PET scan with contrast I think but I'd have to go and look it up - to identify inflammation in the axillary and brachial arteries. If there is inflammation there (and that is typical in PMR, a large vessel vasculitis) then it could also have spread into the neck area. I really don't get why your rheumys are being so obstructive. Another lady your age was referred to Southend because of ?atypical PMR and Dasgupta was adamant it wasn't for all the reasons given to you but wanted to find what it was so sent her for a scan. Lo and behold - it came back with increased uptake showing inflammation in the right places and he had to admit it WAS atypical PMR.

[polkadotcom in reply to PMRpro]

Yes, I had repeated bouts of this in the early days. At it's worst I was given a headset at work so that I didn't have to hold the phone. It seemed to disappear of its own accord, gradually diminishing and I can't now remember when the last bout was. It was always my left arm which was the worst.

[kingharold11 in reply to polkadotcom]

Yes its my left arm which is the worst. I think it is (daft so it sounds) because that is the arm and hand I hold my book in when I read before going to sleep at night. On top of this I am feeling so tired at the moment I am supposed to be reducing preds but can't put my mind to it because I feel so awful. GP is a waste of space and I am not due to see rheumy until June at the earliest. Cheers Wendy

[Jojotay in reply to PMRpro]

Me to and woke with numb arms sometimes

[bowler]

I have been getting awful cramp in the legs, { which has stopped me in my tracks } also fingers, toe's, arms, tingling/ pins/needles in the arms hands and feet.

I had a routine blood test last week, [ I'm having a flare of GCA ] and was called to say I need another repeat b/test on Thurs. as my potassium was low.

I did some reading, and found, that it could be the water tablet I'm taking for high blood pressure that's giving me all these symptoms, and steroids can also cause low potassium, as can kidney disease, which I have.

Non of this relates to you, [ low potassium ] as your bloods are OK. But it's amazing how so many of the same symptoms can occur with different things. I was also low on vit. b12 which also causes pins and needles.

Last year I was sent to A&E by my Dr. because my potassium was too high !!!!!

and was told to stop one of my blood pressure pills as they were the cause of the high potassium and affecting my kidneys. Now the water tablets are giving me low potassium.

Isn't it all confusing.

[PMRpro Ambassador in reply to bowler]

Which is why if someone is on a diuretic they need regular blood tests to check! That doesn't mean every 6 months either!

[barbara1234 in reply to PMRpro]

Of my own volition, I cut my "water pill" everyday dose in half. I went to the rheumy yesterday but didn't think to ask for a blood test re potassium, etc. Also, he didn't suggest tests for ESR and CRP blood levels. I am a relatively (3 mo.) new PMR patient-

Q: does your rheumy or other doc routinely check the EST and CRP?

I am happy to have this chance to communicate with so many people struggling with this and appreciate all advice/comments.

Barbara

[PMRpro Ambassador in reply to barbara1234]

In my case no since my ESR and CRP have never been raised in 10 years of PMR so it is done once a year as more is a waste of time and money!

However, they should be done every 6 months routinely, together with blood sugar, cholesterol, and the other bog-standard blood tests of urea and electrolytes (U+Es) and so on and really before starting any reduction or if you have any return of symptoms - though obviously, if you have never had raised levels like about 20% of PMR patients there isn't a lot of point.

Anyone on diuretics should have U+Es done regularly anyway (IMHO).

[kingharold11]

Hi I have had PMR for three years and have developed in the last month or so tingling and cramp like pains in both arms more so in left one.I am on 5mg pred at the moment slowly reducing I have been on 5mg since before Christmas on Rheumys advice to wait until the weather got better!!!!!!

[Hidden]

Hi Runrig,

Won't recap my story as you are all too familiar with it!

I have crampy/ numb/ tingly/ pins and needle type pain in my arms and legs at night which I take amitriptyline for. I get numb hands when walking and my arms ache when I stir cakes etc.

I am going for nerve conduction tests, carpal tunnel syndrome is apparently more common with vasculitic type illnesses.

My physio told me that tingly/ numb forearm pain can sometimes originate from the neck and shoulders as well.

As always you have my admiration, I don't know how you manage the long days. If my premium bonds come up the first thing I will do is book us both CT/PET scans!

Best wishes

[Runrig01 in reply to Hidden]

Bless you Keyes. I have sent a self referral off for physio, as I am struggling to work with the constant cramp like pain in my right upper arm and shoulder. Walking around as if I've had a stroke, reluctant to use it. Thankfully the trust allows us to refer ourselves to physio, and usually seen promptly. Guess Im just a little concerned this could be another "GCA type symptom" to add to my collection. It is very different from the stiffness and PMR type pain.

Hope your nerve conduction tests help get to the root of what's causing all your problems. I had nerve and muscle studies done about a month ago, they were normal and the neurophysician said it more or less confirms this is Atypical PMR. Have you got a date yet for nerve conduction studies?

I don't do premium bonds but if my lottery numbers come up I'll treat you to the same, maybe even a spa day somewhere in lovely Scotland Take care, Runrig x

[Hidden in reply to Runrig01]

Hi Runrig,

In my mind all these symptoms are related, it's just getting the medics to accept it.

Will take you up on your offer as long as you add in afternoon tea at Gleneagles!

Hope the physio manages to improve things this time. Am finding that adrenaline rushes and distraction is helping my symptoms at work.

Take care

Keyes xx

[Tobytomtom]

Hi

Yes I get this now reduced to 20 from 60. Also now get more in right leg

[Celestee]

Yes, it wakes me up