Polymyalgia Rheumatica ?

[Emilytom52]

I'm new here but I have been reading lots of your messages and post. I would be so grateful to anyone who could give me some advice or just to tell me I'm not alone. About 4 years ago (after major abdominal surgery ) I woke up one morning thinking I'd got the flu I ached and was stiff all over arms, fingers,legs and upper front of legs it felt like I had been exercising but of course I hadn't. After 3 months of visiting my gp and bloods coming back as normal He gave me pred 10 mg daily and it did the trick so after a quick taper I was off them in about 4 months. Then last sept 2015 I started to get stiff painful buttocks worse in the morning and after resting. Saw gp again and bloods were normal he did give me pred again at 10 mg and wanted me to reduce asap I have tried but oh! The pain. Please is there anyone else that has this awful burning pain and stiffness in both sides of buttocks. Tender points seem to be low down either side of spine. I've upped myself to 11mg of pred and it's a bit easier I'm really worried now.

I just wonder if anyone else has this type of pain and would be kind and advise me

Thank you Elaine X

[piglette]

Elaine you were very lucky the first time if you had PMR, you normally start on 15mg or even 20mg and some lucky people get off them in less than two years but a lot do not. They say that the faster you get off the steroids the higher chance of it coming back. I am not sure how true this is. In fact you are never cured of PMR as such, it just goes into remission and you hope it carries on sleeping, the important thing is to get the inflammation under control even if you have to go up to 15mg. Once the pain starts to take control you can't stick it out, the PMR just takes over and makes life a misery. Around twenty per cent of people do not have raised blood markers which can make diagnosis more difficult.

[Emilytom52 in reply to piglette]

Thank you. Xx

[Emilytom52]

Ohhhh. Thank you so so much for replying to me. I've felt very low today and although I have a wonderful husband and family I find this pmr can make you feel very alone. From now on I will keep in touch with the friendly people on this site.

If there is anyone out there that has this awful buttock pain I would be very relieved to hear from you

Thank you so much E X

[Rose54 in reply to Emilytom52]

Hi

Yes I do have the pain in the rear to put it politely normally for me a warning sign I have done to much the previous day

Sometimes it feels like cramp normally goes with rest

Rose

[Emilytom52 in reply to Rose54]

Thank you for replying to me Exx

[piglette in reply to Emilytom52]

I have the buttock pain, it also feels that I am sitting or lying on large pebbles. In fact I had the cushions in my armchair replaced because of it, only to discover that it was me not the chair! The same happened with a new mattress.

[Patricia157]

Hello Elaine

Following on from Piglettes comments normally you would be given 15 mg Prednisolone to start with and then very slowly reduce. The flare points for me were when I reduced to about 11/10mg and had awful back, buttock and thigh pain. The next was at 8mg when the pain was mainly in my lower back. I upped it to 8.5mg and that worked gradually for me. I found the most helpful thing was to sit when I could with a heated electric pad on my back -bliss. Otherwise I was really in pain and very uncomfortable. I found it helpful, if you can manage it, was Aqua aerobics, it seemed to help my mobility but I know how hard it is to get started. Some people find the Bowen therapy helps them.

You are not alone and I am sure others will make good suggestions. It is a case of finding the lowest dosage to give you a reasonable quality of life and then when that settles start reducing very slowly.

Best wishes and hope you improve soon.

[Emilytom52 in reply to Patricia157]

Oh Patricia thank you so much for taking the time to reply to me you are so kind. Thank you for your advice I will certainly take it and increase my pred. I'll tell my GP when I next visit and tell him what I've done and if he doesn't agree I'll make apt with another. Do you think I should first go up to 15 mg to see if that works or to go straight to 20mg and then reduce from there

I'm very grateful for the reply I've had from you Rose and Piglett how kind E xx

[DorsetLady PMRGCAuk volunteer]

Hi Emilytom52,

What a nightmare for you, so sorry. If you say you have improved slightly going from 10mg to 11mg, then going up to 15mg will probably be enough. Try it, and you should know within a couple of days whether it has worked or not.

But you do need to talk with your GP as soon as you can, so he is aware of what you have done, even if you just leave a message at the surgery asking him to get back to you.

Hope you get some relief soon.

[Emilytom52 in reply to DorsetLady]

Thank you for taking time to advise me I'm very grateful. I'll try 15 mg. E X

[violetsnowdrop]

On a similar theme .....My wife says I'm a pain in the rear, does that count?

[DorsetLady PMRGCAuk volunteer in reply to violetsnowdrop]

No! That's nothing to do with PMR!

[Emilytom52 in reply to violetsnowdrop]

Mmmm she's prob right. X

[Runrig01]

I often get pain in the buttocks, often as some describe like a cramp like pain. My rheumatologist has also told me I have bursitis in the Ischio- gluteal area, (the bony bits of your bottom that you sit on). Bursitis does cause burning pains, when I get bursitis in the hip it is a burning pain that spreads to the point I have to stop walking. I agree with the others re your dose, but would contact gp to inform him if you change dose.

[Emilytom52 in reply to Runrig01]

Thank you runrig01 for replying to me I'm so grateful for everyone's kindness and advice. My buttock pain is in the padded muscles either side of lower spine further up towards my back than yours not the part I sit on. I was hoping that someone would be able to tell me "I'm not the only one in the whole wide world that has the pain and stiffness there" there are two pressure areas either side exactly the same area that are sooo tender to touch/press I think this is the inflammation area.

Thank you again E x

[Runrig01 in reply to Emilytom52]

I do get pain in the areas you describe, I feel it more when I'm walking for a little while. PMR can affect all the pelvic girdle muscles, which includes the ones you describe. I'm sure your not alone. 😃. Take care, Runrig x

[Emilytom52 in reply to Runrig01]

Thank you thank you runrig01. I'm not alone in my bumper pain then ? X 💐

[1Purplecrow in reply to Emilytom52]

Hi, One of the symptoms I experienced in the early days of my PMR journey was pain in my butt muscles. The pain started in my glutes and extended down the back of my thighs. I felt like I had done some vigorous exercise, but was only sore in my backside.

Good luck in your PMR journey. Be patient and give yourself time for the disorder to work its way through. You will get better. It has been 3 years for me, and I finally have the end in sight. Jerri

[Emilytom52 in reply to 1Purplecrow]

Awwww jerri thank you for giving me your time and your kind words. It's so heartening to know that the pain can be controlled even if it does mean putting a few pounds on, but hey ! I'm not going to be wearing a bikini any time soon ( never) so I'll just look after myself and enjoy my loving family. I'm sure my beautiful grandchildren won't care how much I weigh or what I look like. Bikini or not !!! I'm sooo glad you can see the end in sight it gives us all hope. Thank you. Xx 💐 E

[PMRpro Ambassador in reply to Emilytom52]

I'd be inclined to suggest myofascial pain syndrome - and I'll tell you you are not alone, I had it too. It is common alongside PMR. I had steroid injections and manual mobilisation of the trigger points MPS causes and I also find Bowen therapy is very helpful, doesn't always help but worth trying a few sessions (you usually can tell in about 3 sessions if it is going to help you although you may need more for full effect). Doesn't do much for the PMR itself but does often help the add-ons.

There are loads of posts about it in various place - not got time to tell you where at present though. If you can't find info remind me next week when I'm back from my conference...

[ajbutt49]

I too was diagnosed with PMR. I first developed symptoms following abdominal surgery in spring of 2016. My body aged 20 years in just two months. Following medical treatment with prednisone and Celebrex, I adjusted my diet while completing Ayurvedic detox treatment. I still avoid: processed foods including sweets, nightshade foods, and most bovine products. I maintain an active life with yoga, swimming, tai chi, Qi quong & walking along with regular meditation. I've experienced relapses usually following excessive exercise such as runnin, active sports even pickleball and heavy yard work. Symptoms are best treated with lose dose preds. Good luck!