Everything going crazy what do I do????

Hi Pam, I'm so sorry to hear abou your pain, exhaustion and other problems. I can empathise with you. I have PMR, fibromyalgia and osteoarthritis in my knees and hips. I can't work and receive esa, I have applied for pip but haven't heard from them apparently I need to go to ATOS for a medical. I'm not holding my breath though I think it's unlikely they'll award it to me. I've finally applied for a blue badge afte denying that I really need one. I'm pretty much house bound if my husband isn't home to drive me. My children have told me to get an electric scooter but I feel humiliated just at the thought of it. I'm 56 but feel more like 96!

Could you get a sick note from your doctor and take it from there? I know it isn't a lot of money but could you manage? Deb

Hi Pam

I'm in Canada and i went off work in April with just not coping with work, back aches, and my doctor took me off work and during this period my symptoms got worse to the point they figured it was pmr.

My LTD denied me saying i went off work on one diagnosis and now i have pmr. They denied me and i had to prove i had pmr from day one which is easy for you. I proved pmr at least we all thought we did and now they say i could do my job.

My job is alot of writing and i bairly can spell or put a thought together. I do know people with pmr on Ltd but were diagnosed before going off.

Good luck and keep me posted. I couldn't work, were are you and what do you do.

Mariane

What do your doc says about it?

When did you see him last me?

About the tapering of your steroid?

Please, let's know, I am interested and other fir sure are too.

I have GCA and lately I am having flare ups which are bringing symptoms I had ever has -, a mild swolleness on legs .

I exercise daily., I stick on the recomended diet.

I am taking Pred there are 3 years.

I see that after a certain time Pred brings new-/ strange symptoms

The same I hope for me, I hope for you , Pam

Hope we get the help of our doc on the proper treatment, on tha tapering of the steroid..

What is your steroid prescription level .. I would up it by the sounds .. I my told my RA that I would stay on 20mg a day if that is what it takes to have quality of life .. I'm almost 75 don't care anymore about chipmunk cheeks and weight gain as long as I can breath .. and with my PMR and all my other Health Issues that might be what it will be .. I'm now down to 18mg but am having breathing problems .. so I'll probably go back to 20mg .. he doesn't like it but will listens to me .. Just keep hanging in there .. and I'm sure Eileen will send a post .. she is very knowledgeable

Many of us don't work - the nature of the beast is that more older people develop PMR/GCA and several of us were already retired quite early. I worked but I was freelance working from home and that meant i had far less to cope with in terms of commuting and so on.

If you are that ill then really you need to consider longer term sick leave to allow your body a chance to recover. There is no question that being able to rest properly and not being subject to stress definitely helps. Your job with school-age children will expose you to loads of infections. You don't say what dose of pred you are on but it is an immuno-suppressant and that means your immune system is not able to respond well to infections. The result is that when you develop an infection it lasts longer, there is more stress on your immune system and you are even more likely to catch another - rinse and repeat.

 I don't know where you live, I assume in the USA judging by the terms you use, but in the UK GCA is covered by disability law. Can't comment on US employment law but it is something you will have to consider investigating if you want to be able to recover well.

However - you say the GCA is the worst and you can't exercise because of the pain. Do you really mean the GCA symptoms pain is back? If that is so you probably need a higher dose of pred so you really need to see your doctor far sooner than May. If you have reduced to a level of pred that is allowing the GCA pain to return you are having a flare and the same applies as at the outset: you could still have visual problems if the GCA is active in the wrong arteries.

Gosh Pam, shingles is bad enough particularly if you have PMR and GCA. If you get paid sickness at work at least get a sick note from your Dr . It might be worth finding out how long you can be on sick leave before your pay is reduced ..it used to be 6 months but not sure what it is now. After that your employer may let you have a phased return to work but I guess it depend where you work. I was an Intensive and critical care nurse specialist and was lucky to have the option to take early retirement having paid into my pension from the age of 18. Shame to do it I know because I loved my job but knew I just couldn't keep up with the physical demands of the job. Prescription charges are another necessary evil for us too!