Dealing with GCA&PMR&Sever Depression

We are in awe of those patients who have to work whilst suffering from PMR and GCA.  Many find they have to take a period of sick leave in the early days, gradually returning to work on a part-time basis and slowly building up their hours.  Some patients also decide to take retirement.

​Like you, I remained undiagnosed for 12 months, with four of those being spent in bed and travelling to hospital appointments by ambulance and wheelchair.

​The steroids do mess with our emotions but we promise that you will slowly start to feel better as you reduce the dose.  Meanwhile, don't suffer in silence but tell your GP what you have told us - there is medication that will help you.

Hello gillian, like Mrs o I'm in awe of patients of PMR/GCA who need to work  especially in the very early months of symptoms and diagnosis. I am lucky in that I run a couple of holiday cottages and so I work for myself. I do all the work plus the gardening but if I ever feel unwell, sore or stressed my husband always helps me out. 

However, for those of you who do not have the luxury of deciding what and how much to do, especially on the days when you are feeling unwell life must be very hard and you have my admiration.

as you reduce down the doses hopefully you will again begin to feel more like your normal self and perhaps work on a part time basis. Luckily for me I have not suffered much from depression although some days I have my moments. Perhaps see a different Dr at the GP surgery, one that takes the subject of depression with the seriousness it deserves and hopefully they could signpost you to a councillor. As for information on PMR/GCA there is plenty of info online, also do look up the Bristol PMR plan, that should help you in relation to treatment best practice, then when you get down to 10mgs ask us about the dead slow and almost stop method of reduction. All the best, regards, tina

Hi Gillian, I'm really sorry to hear you describe how bad you're feeling. But here's a few thoughts - At least you know now (after a year) what exactly are the conditions your're suffering from. GCA and PMR can be quite nasty conditions - but they're not fatal. Indeed you can recover very well. There are many in this forum who are great expmples of this and you can ask all kinds of questions as time goes on. Depression is really awful, seems endless and is often reported with Pred. use. Mrs.Os advice here is really the best. Do this. I don't know how to advise you re. the work situation except to stay off for as long a period as you can - if both boss and finance permit. .

You're not on your own now, and you're more resilient than you might think - It must have been so hard to keep going for a year feeling so unwell and yet no diagnosis or proper treatment. That's all changed now and here's the beginning of a road to much better health.  Kind thoughts, J

You do have a challange, being sick and working.  For me, researching the symptoms, asking people here as you have, even odd symptoms, like someone here asking if Pred making their hair curly, which helped make light of things... I too get depressed often and think, I just don't like this way of life I'm having to live right now.

When I went through the serious brain fog time, making decisions was so hard, I said almost in tears to my husband "this is NOT me!"  he agreed and said it was the Pred.  That did help to have that understanding.

Unfortunately Pred is a must for the extreme inflammation that caused our pain, and many of us still have some pains, just not as bad, but yes... bad for our mental state.  When I hurt, my mind hurts.

People might say to you, you don't look sick, or you look good, but they don't understand we don't feel good all the time.  And then the round face and turkey neck symptoms make us feel aweful too, but ha, I'll wear a scarf or bright jewelry hoping someone just looks at the colors and not my face, hee, hee.

KNOW you are NOT alone!  What you feel is real, we can relate.  My doctors did NOT tell me of any symptoms!! So until I found this site, I didn't understand what was going on.

Hang in there.  Know some days you may feel depressed, I watch funny or light movies to DISTRACT my mind!  But did have a cry yesterday because I've lost my tastebuds now.  A rare side effect I think.

Good for you for posting here!  Safe place.

Hi Gillian

I was diagnosed with GCA at the end of 2014, after 5 years of PMR, although the PMR was in remission and I wasn't affected particularly by it during the last 18 months or so.

I'm so sorry you find yourself in this situation with no apparent help from your GP. You need the support of a good GP or rheumatologist. Can you ask to be referred to a rheumatologist?

It's a hard journey and difficult to manage, especially as you are so new to it.

I don't want to go into all the symptoms and management of the condition just yet, but if you want to pm me, I'm happy to talk to you.

You have found a great support group here who are very knowledgeable, so that's a great start. We are here to help you.

For now though, you need to be signed off work. Your GP should have automatically signed you off for several weeks to begin with.

Take care and do use us to get you through this. X

Here are the links to the pinned thread mentioned by MrsO.

http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316

 Do go and look at both sites.

Where do you live, there might just be a support group near you.

When you visit the North East site, click on the relevant section and it will take you to the national organisation which lists all support groups.

I agree with what everyone else has said - and I completely understand. I'm 51 and work full time - even though it's an office job, some days I can barely cope, I can't imagine trying to waitress!

I was diagnosed in December last year and struggled through with the odd sick day, but recently had a month off - mostly to deal with the depression that seems to come with PMR. It's done me the world of good. I still hurt, I still struggle but I'm winning the brain war again.

I hope you can get some relief and maybe find a new direction - who knows, there might be some really good changes coming as a result!

Hello Gillian, I agree with everything  the ladies on this form have told you (i am still a newbie) diagnosed in January of this year and thank goodness found this sire.

The ladies are wonderful, when i first went to my doctor he was not helpfull at all, so when a new lady doctor arrived i went to see her best thing i vere did, we are learning together about PMR and she does not mind when i go armed with a pile of papers on questions i need to know about( and the ladies here have given me advice on what to ask the doctor) she laughs and says we should change places, so what i am saying is if the doctor you see is not helping you go see another in the practice.

I too worked for years not knowing what was wrong with me, and i do get depressed somedays, and cry like a baby.

I got the book written by Kate Gilbert and it is so helpfull try and get it if you can, it even helped mu husband to understand.

Good luck and please keep in touch there are ladies who can help you here, we even have some men!

sendin you lots of hugs, Mags