I'm not going mad!!

Hi, I'm new here and glad I found this site. Finally, after months of badgering GP he now thinks I have PMR and being referred to Rheumatologist. Been taking 15mg Prednisolone for few weeks now and feel better pain-wise but still very fatigued. After always being energetic this has really shaken me to the core. My recent blood test revealed blood counts ok, but slightly anaemic and folic acid levels reduced. Although I presented all classic symptoms only my CRP was raised slightly, although I understand this can happen judging by other people's reports. Glad I persisted with GP, although initial reaction a to say 'you get aches and pains as you get older' wasn't helpful. My daughter suffers from severe fibromyalgia (8 yrs now) and now registered disabled. Anyone else have family connection to these two debiliating diseases?

[PMRpro Ambassador]

There are one or two people who have both at the same time! Does that count? My grandfather and a great aunt both almost certainly had PMR but that was in the 1950s and 60s so it didn't get a name beyond "rheumaticks"!

You need to manage the fatigue by pacing - there is a useful link if you want it but I'm sure the fibro daughter will have been told about it?

[Annodomini]

My father had PMR. He was terribly debilitated before his diagnosis and, once on pred, he was like a spring lamb and went off to New Zealand to see my sister and her family. Shortly after his return, he died of an undiagnosed ruptured aortic aneurism, though it isn't thought that it had anything but a coincidental connection with PMR.

[polkadotcom]

I've got both, but no family history of anything other than a minor helping of OA (my mother).

I've got hip and knee replacements too, so maybe it starts with me. I have warned my daughters!

[PMRpro Ambassador in reply to polkadotcom]

Beats my nephew and niece's genetic burden: both parents died of cancer, so did father's both parents, we don't know their mother's history as she was adopted. I'll take a few joint replacements...

[polkadotcom in reply to PMRpro]

Yeah...........I was happy to get them!

[Hidden in reply to polkadotcom]

Just noticed you've got fibro and PMR. I must say fibro sufferers do not seem to get taken so seriously as other illnesses. Some doctors don't believe condition exists. We've just fought 2 tribunals to get her benefits reinstated. If she didn't live with me I don't know how she would have survived when no payments for 10 months, and they won't be backdating them either. Been told by neuro consultant, immunologist that they can't do anymore for her, she's intolerant to most medicines too. Most humiliating and cruel interviews for tribunal too. Feel I must get control of my symptoms as I'm her carer (unpaid, of course)

[Woodiesmum]

I got diagonosed nearly 25 yr ago x with fibromyalgia and to be honest I think it's always been pmr x now I have the right diagnosis and s great rheumy life hopefully will get better x very slowly though x as I have GCA too x

[Hidden in reply to Woodiesmum]

I've now received Rheumatology appt - maybe PMR for my ailments. Think initial improvement in symptoms spurred me on to do more and now feeling very lethargic and achy last few days. Might be helpful for my daughter to see a rheumy rather than neuro consultant in future for her fibromyalgia. Good luck managing your illnesses.

[Sallyaches]

Just to say your anaemia will not be helping the fatigue, I do hope you are taking some extra iron and folic acid . It's not scientific but I feel when I have anything else wrong with PMR the effects seem to multiply.

So far as being lethargic and achy sometimes you just have to accept it and be kind to yourself.

Best wishes

[Hidden]

Thank you for your kind comments. I'm taking extra vits, iron and folic acid now. Was surprised by low levels as I eat sensibly and never been anaemic before. I also had bad reaction to all my meds for high BP and slightly raised diabetic sugar levels. GP said I couldnt be 'allergic' to all meds! Only by being firm and saying that I thought it was my body's reaction to them and something definately was wrong that GP help helped isolate problem drugs [which were confusing possible PMR diagnosis], and now taking alternatives. Seems as if PMR can really mess up whole body. We know our own body and just wish professionals wouldn't dismiss us just because we're over 60! Well, first rheum appt at end of March - feel optimist that help is nearly there. Good to see how other people cope, too. I am not alone out there.

[PMRpro Ambassador in reply to Hidden]

Anaemia is often found alongside autoimmune disease. I hope your doctor has checked for other things - though he does seem less than enthusiastic...

They can be very resistant to patients telling them something doesn't agree with them. i was given an ACE inhibitor for BP - went bright scarlet and ITCHED. I was in hospital at the time and told the ward staff - who handed me an antihistamine tablet and a damp flannel! Luckily the consultant was a bit brighter and switched me to something else.

[Woodiesmum in reply to Hidden]

Try and keep to 70grms of carbs a day x it will help control fatigue and also reduces your flammorty markers too xx

[Hidden in reply to Woodiesmum]

Thanks for carb info. Need to control this for diabetes too. May also be overdoing fruit as I try and push for more healthy eating. When I had glandular fever 30+ years ago I went to see a nutritionist. Worth every penny as she gave lots of helpful advice. Do sometimes wonder if GF mucked up my immune system. I know I caught all sorts of colds and viruses afterwards.

[Woodiesmum in reply to Hidden]

Please. Cut back on fruit x my husband was diabetic years ago and was told oh eat loaf of fruit it's good for you x it was so bad he was so ill x now it stands 3/ 1/2 stone lighter and he took control of his life back and he is now a qualified nutritionist xx and helps other free to stop diabetics x like he said it's easy but you have to say no to sugar xx simple xx the only fruit we have are berries x and cherries x but only a few xx any advice please don't hesitate to shout up x

[Hidden in reply to Woodiesmum]

thank you woodiesmum for comments. Lots of misleading info out there. well done to your husband qualifying as nutritionist.

[altywhite]

I have often thought about the connection. I have temporal arteritis but am also very achey and always sooo tired. My mum always told me that my grandma had 'neuralgia' and pernicious anaemia. I know she had a lot of pain and was bedridden for the last year of her life. This was in the late 50s when I was still a little girl. But as I have grown I have always wondered what was actually wrong with her and came to the conclusion years ago, before my diagnosis, that it was some kind of fybromyalgia. I am now pretty sure that she had PMR....probably untreated.

[PMRpro Ambassador in reply to altywhite]

Almost certainly untreated - pred was only just invented then.