PMR OR OTHER !

[SRIXON]

Hi all. I have appreciated input on this site before, here goes;.

First diagnosed with PMR in 2017, put on pred which had defo positive effect on my neck, shoulder, back and arm pain. Starting I think 15-20mg pred.

Over time i reduced my pred, had several flareups, upped again which had the desired effect.

This year I saw another doctor, I discussed my issues, he organised a referral to a Rheumatolgist at my local hospital.

In the following months saw him twice, had blood tests, xrays, visual examinations.

Final visit and letter stating I had not got PMR, diagnosis as per attached letter.

At the time I was on 7 mg, I am now on 5mg, suffering with fatigue, arm ache, pain in the back of my right hand.

To top it all 6 weeks ago I was brought to a stand still with terrible back, left buttock and left upper leg pain that made my upper leg numb, along with shooting pains which were aweful.

I have seen my doctor who said he thought it was sciatica prescribed painkillers co-adomal, now waiting for MRI scan.

Today have pain in my lower back, slight numbness in left upper leg, arms ache/hurt if I try to lift anything, my right back of hand around index finger knuckle hurts like hell at times.

I have an appointment with my doctor this Thursday I really feel I want to say I want in crease my pred again to at least 10 to start with.

Im not in a good place at the moment, pain gets you down, sure would appreciate your inputs. Thanks Carl xx.

PS I am type 2 diabetic.

[PMRpro Ambassador]

I'd be very tempted to blame the "Witch's Shot" on piriformis syndrome - part of myofascial pain syndrome which is common alongside PMR and typically causes sciatic problems. The nerve passes through the muscle and if it is in spasm it pinches it. Doesn't have to be spinal in origin - though the MRI will show that one way or the other,

I don't read that as saying it ISN'T PMR, just a bit of scepticism. Which I am not entirely sure is justified. I don't see a second opinion as much of an option in the current climate - unless you can go privately. And then it needs to be the right person who is fully aware that normal range markers are "normal" for 1 in 5 patients. It COULD be entirely due to myofascial pain syndrome - I can vouch for that.

[SRIXON in reply to PMRpro]

Thanks for your input x

[Sharitone]

Sorry Carl, this is above my pay grade. But yes, pain does get you down, and I wish you lots of courage for Thursday. If your GP isn't kind and caring, show what him/her what it says at the bottom right of your hospital letter! Kind and caring, honestly! Whom are they trying to convince, and why do they need to?

[SRIXON in reply to Sharitone]

Thanks for taking the time to comment. Carl x

[Bridge31]

I have had similar back issues recently with similar amounts of Pred. varying between 7 and 5I’ve seen a chiropractor in the last two weeks who surprisingly was very knowledgeable about PMR/GCA. ( The last one I saw knew nothing about it )

He’s given me some gentle exercises to do before getting out of bed which have helped .

Just knee raises towards your chest and then rolling them gently from side to side etc. I do them for about 10 mins.

[SRIXON in reply to Bridge31]

Thankyou

[bBarnabus]

I have been laid up for over five weeks now with sciatica. It is absolutely awful. I thought it was piriformis and laid with ice and heat then doctor suggested it may be vertebral. Awaiting the results ofa ct scan at the moment. Nothing to add really but sympathy. It’s difficult to know if you have put your back out or if it’s piriformis. I get pain all the way to my foot which apparently is more typical of vertebral problems. Best of luck

[SRIXON in reply to bBarnabus]

Thankyou x

[PMRpro Ambassador in reply to bBarnabus]

I had pain down to my ankle at one point - all muscular in origin!

[bBarnabus in reply to PMRpro]

That’s interesting but I’m feeling more and more that I’ve an herniated disc. I read somewhere that piriformis pain does not get below the knee. Do you think otherwise. It’s just that I’ve been plagued by electrical sensations in the front of my calves at night in bed. I’m waiting for my ct scan results tomorrow.

[PMRpro Ambassador in reply to bBarnabus]

Whoever said that had obviously never had it! I definitely don't have disc problems ...

[bBarnabus]

Incidentally I am on 12 mgs of pred and lowering

[cranberryt]

I read this as him thinking you have multiple issues. Doesn’t seem to negate the PMR. But the numbness, pain, etc. could be sciatica. It’s brutal. Hopefully they get answers on that soon. I would call the dr and ask if you cannincrease. But it won’t hurt to take a couple extra mg to see if it helps while you wait for an answer. getting below 7 is really hard anyway.

[SRIXON in reply to cranberryt]

Appreciate your comments. Carl x

[bBarnabus]

Thanks I will await the scan results and see if there is a source I can begin to deal with

[bBarnabus in reply to bBarnabus]

Actually my pain down the front of my calve not the back !!

[bBarnabus]

Thanks the links were very informative

[SRIXON]

Thanks for your input much appreciated Carl x

[bBarnabus]

Thanks Dad good luck we’re in the same boat There will be a day when we will forget all about this pain hopefully