Temporal arteritis

[B5252]

I wonder how temporal arteritis makes others feel? I've had it before (about 6 years ago), but felt the same as at normal times. I am different this time as feel achey, shakey and as if I'm "not there". I try to do things around the home but have to keep on resting. I'd be happy to hear if this is normal. Thank you. B.

[DorsetLady PMRGCAuk volunteer]

Hi B5252 ,

My own TA/GCA started with aching biceps, followed by stiffness and pain in both shoulders, worst in left - so was initially diagnosed with frozen shoulder, and treated as such. Months of incorrect diagnosis led to extremely painful shoulders & neck, making it virtually impossible to turn over in bed at night, general fatigue after doing the slightest job. Eventually the classic head, throat, jaw pains until finally diagnosed some 18 months from being of pains.

Can't say I felt shaky or had a feeling of 'not there' but certainly was achy in upper body.

Have you seen doctor and had any tests to try and ascertain what the problem is? Unfortunately it could easily be many things.

[B5252 in reply to DorsetLady]

Thanks Dorset Lady for replying. As well as numerous other problems found, frozen shoulder both sides was another diagnosis. I'm currently waiting for a biopsy with rheumatology sometime, and a review of the Prednisolone with Dr on Friday.

[DorsetLady PMRGCAuk volunteer in reply to B5252]

I think the frozen shoulder diagnosis is often a cop-out. I had intense physio on mine for about 4 months, which I now know probably made it a damned sight worse! Language, sorry!

If you're already on Pred, then a biopsy may be a bit late to give a definitive diagnosis. They're not full proof, but doctors still insist they're the gold standard way of approaching it. Yes, if you have a positive response you definitely have GCA, or TA, but unfortunately a negative response doesn't mean you are in the clear. The sample of the artery they take may not show affected cells, but that doesn't mean it couldn't be affected elsewhere.

Please keep us informed of your progress.

[SheffieldJane]

I can relate to the achey, shakey," not there" feelings. However my diagnosis is PMR and I put the symptom ( especially the kind of disassociated feeling) down to good old Prednisalone. As for the burst of activity and then a rest, that's just self care,mention it to your doctor though, it may be significant that you are experiencing the condition differently this time.

[B5252 in reply to SheffieldJane]

Thank you. I go back to the doctor on Friday so will mention it, but don't you just hate the awful feelings?

[SheffieldJane in reply to B5252]

Yes I hate the awful feelings, then they pass to be replaced by something else awful. A buffet of awful. I'm worse unoccupied like I've been today with a bad headache and severe eye strain for no reason I can fathom. Ho Hum!

[lesley2015]

Sounds very familiar- nrvervsure if the shakes was TA it preds- extremely fatigued- often felt detached from what was going on. Not sure if you have Pmr as well, I go do ongoing various aches and pains.

Summing up - although on appropriate meds- still feel unwell and not able to fully participate in anything - although I try my best!

[B5252 in reply to lesley2015]

Thank you for replying, I was diagnosed with PMR 15 years ago and was told a few years later I have fibromyalgia running alongside it as well as CFS or sometimes called ME. Hope you get relief from your aches and pains now and again. Laughter is the best medicine, but it doesn't always feel like it!!!

[lesley2015 in reply to B5252]

Thank you, totally agree if we didn't laugh .......

best wishes

[BonnyQuine in reply to lesley2015]

Hi leslie2015

Fully identify with your last sentence - couldn't have put it better - relieved I'm not the only one.

Take care.

[dinhal in reply to lesley2015]

Oh boy, you hit the nail on the head if you had been describing me

I have PMR and am on prednisone 10 mgs. Started at 12 1/2 and am going down 1/2 next week.

It didn't help that I had surgery for a hip fracture in the middle of this and many family problems.

Of course, this is the time fate stepped or I should say galloped , in and I had to fall

I spent a day doing my favorite thing. You know it well I'm sure

Go to urgent care and wait and have X-ray

Wait

Go to hospital for cat scan and hurry back before they close

And wait

Then they only sent half of the scan I left with the assurance that they would call me

Wait

Wait

Had an appt with my dr and they called to find out results three days later and

Guess what!

I'm fine

I'm glad of course and I have the most glorious colored black eye .

Actually it has been black, purple, pink and green and I try to match my clothes to the color du jour.

I'm 82 yrs old and don't know if I will ever be back to normal

I stumble and get very tired and go from one thing to another

Couch to chair to bed and back.i am so tired

I just want to walk my dog, dammit

I'm on Percocet and that's because I have had spinal surgery also and still have pain .

I also just started something for anxiety but don't take it unless I really need it

OMG, I have rattled on Didn't mean to write a hook entitled How to Piss and Moan and get nowhere

Thanks to anyone who

Got through this

Diane from

Michigan U S A

[B5252]

Thank you to all of you for replying. I know I'm not alone any more.

[1Healthnut]

Sounds like a prednisone withdrawal, it happened to me

[BonnyQuine]

Achey, shakey + brain fog . . Yes - was diagnosed w TA in Nov 2016, and that's how I've felt most of the time since. Esp shaky - weak n wobbly is how I describe it.

The weakness and shakiness was much worse on the high doses of Pred. Could barely get up the stairs, or up from the floor. Now that I'm hovering between 15-16mg that's not quite so bad, but the achiness is beginning to be more noticeable at times.

Onwards n upwards?

[B5252 in reply to BonnyQuine]

Thank you for replying. I appreciate all information.

[30048]

The first time I was diagnosed with Temporal Arteritis I told the doctor it felt like I had mononucleosis ( extreme fatigue) along with jaw pain and a constant low grade headache. That was five years ago..two years later I had a flare and my symptoms were not as pronounced but I did not feel well..more like the flu. ..feeling unwell was definitely a part of it. Both times I was put on 80 mg. Of prednisone and then the side effects of that blend in with my original symptoms, I think the shakiness etc. are more side effects of the medicine in my case. I hope that is some help.

[B5252 in reply to 30048]

Your first time sounds similar to the PMR, CFGS and fibromyalgia I was diagnosed with. The temporal arteritis was dismissed at that time. You are probably right about the feeling unwell is a side effect of medication. Thanks for replying.

[Cobnut]

I agree with the fact that it is the pred that makes you shaky, vague and tired. I have had GCA for almost two years with several flare ups resulting in much higher doses of steroids and each time they go up so does the fatigue and other symptoms. I am now down to 14mg and my target is 10mg when hopefully a lot of the tiredness and vagueness will disappear along with the moon face and fat tummy. As the others will tell you, you just have to put up with everything the steroids do to you to keep the inflammation under control until one day perhaps it goes altogether. I was told five years probably so only three to go!!