Having PMR and/or GCA made me feel isolated. Do y... - PMRGCAuk

PMRGCAuk

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Having PMR and/or GCA made me feel isolated. Do you agree/disagree?

Dev_Director profile imageDev_Director105 Voters

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21 Replies
rockyandzeus profile image
rockyandzeus

Hi there,

When you have a disease and you don't know anyone else who has it in your own city,

And you have no bloodwork to support it (atypical ) you not only feel isolated by 'neighbour' community but also by medical community.

Thank God for this forum

mamma1027 profile image
mamma1027 in reply to rockyandzeus

Couldn't agree more rockyandzeus - I too am atypical, having neg bloods and being under 50. Having found this site abd being able to 'talk' to fellow-sufferers has been a Godsend.

Just felt isolated because there was so much which I could not do initally and I was stuck at home just watching TV/videos. I had to give up some of my voluntary work and could not drive for a couple of months. Fortunately my health gradually improved and so I was able to do more and felt less isolated later on.

Green_girl profile image
Green_girl

It took 4 months to get to the right person to start the diagnosis and a further 4 months to go through all the tests to make a good diagnosis before any treatment could start. I had only heard of a few very elderly people who had it -and that was from their relatives, no personal contact. Felt very, very, isolated and afraid!

5lupins profile image
5lupins

When finally diagnosed after 9months too ill to care what it was, so took meds and waited . The last 2 years with ok bloods I have often felt very 'lost' . , Doctors need to believe in everyone. Fingers crossed for the future.

mickt profile image
mickt

Hi i voted disagree ,tho i know what most have felt .Im 12 mth in ive had good attention from hospitals im under.All the tests .mri ,tab,ultrasound ,ecg,echocardiograms , lung function tests.had 2 mri scans.Im type 1 diabetic have addisons disease,borderline APS got to start warfarin,In july i start second lot of six cyclophosphamide infusions .Ive had 3 flare ups when on 20mg steroid currently on 25mg daily,my eyesight was under threat with gca .Im was 50 when it started now 51,initially thought too young but not.Ive had to retire fortunately on a good pension from my manual job i had.It doed change your life it has mine that's for sure,but i have never felt isolated up to now.Ive had my moments of frustration though be lying if i said i haven't.I can understand more elderly folk feeling cut off with this illness ,its hard been younger with it never mind older.Good luck all keep positive if you can its hard i know some times but only way forward i think.

jinasc profile image
jinasc

mickt

was referred to and attends a local support group. How he can vote disagree I do not know. Even he must admit, he has not been 'Alone'.

These two illnesses were very low profile and because, at that time it was mainly people over 65 that contracted this auto-immune illness, not much was done about it. However Professor Bhaskhar Dasgupta a world leader in GCA and PMR knew that the age profile was lessening and as the 'baby boomers' came on stream it would increase and it has. The age range has now been recognised as lower. Bell curve statistics can be very misleading.

Jeanieallergy profile image
Jeanieallergy in reply to jinasc

sambucca I think you have misunderstood the question. Voting disagree means you don't feel alone. Mickt has voted correctly: by voting disagree he means he has had the support he needs.

Badgergirl profile image
Badgergirl

I have felt very isolated. I was always working very hard with studying and 2 jobs as well as having a good social life. Since having PMR I have been too ill to work much or go out. My life consists of reading and TV and occasional gentle walks and meanders to the shops, usually with my husband as I can't carry anything - so no window shopping. Since I've been ill few of my friends have contacted me and none have visited. Thank goodness, I do see my grandchildren.

Badgergirl profile image
Badgergirl in reply to Badgergirl

Just to add, if it wasn't for this forum I would feel more isolated. I am very grateful to the people on it.

duchessrenee profile image
duchessrenee in reply to Badgergirl

Hello again, Badgergirl! That's what really gave me a jolt - the so-called 'friends' who I had known and done things with for years who suddenly dropped off the radar when I became ill, less able to do physical things and had to start using a cane to walk with. I was very active in 2 choirs, theatre, going out socially and all that has stopped, and I have come to accept that but what I can't get over is how there are never any phone calls, etc. to just see how I am doing or to 'catch up on things'. The few people I have bumped into act embarassed to see me because I was such an active person before. ( I want to tell them don't worry, you can't catch this!) I can do much more now than when I was first diagnosed, but to tell the truth my heart just isn't in those activities anymore. Thank God I love reading! It's nice to hear you have a supportive husband and the miracle of granchildren.

Badgergirl profile image
Badgergirl in reply to duchessrenee

Hi duchessrenee. I am very disappointed in my 'friends'. I have always been there for them when they've been going through hard times either physically or emotionally. Some of these friends I have known for many years. I now think that's all I was good for. Now that I am unable to go out and listen to their tales of woe over a late night drink I have served my purpose. Like you, I haven't even had an email or phone call to see how I am! Serves me right for always being a 'fixer' I guess.

duchessrenee profile image
duchessrenee

Hello again, Badgergirl! That's what really gave me a jolt - the so-called 'friends' who I had known and done things with for years who suddenly dropped off the radar when I became ill, less able to do physical things and had to start using a cane to walk with. I was very active in 2 choirs, theatre, going out socially and all that has stopped, and I have come to accept that but what I can't get over is how there are never any phone calls, etc. to just see how I am doing or to 'catch up on things'. The few people I have bumped into act embarassed to see me because I was such an active person before. ( I want to tell them don't worry, you can't catch this!) I can do much more now than when I was first diagnosed, but to tell the truth my heart just isn't in those activities anymore. Thank God I love reading! It's nice to hear you have a supportive husband and the miracle of granchildren.

mickt profile image
mickt

Sambucca I voted that I did not feel isolated ,yes at first it was strange but ive had good support off groups, people on here ,Medics and gps ,maybe im lucky.It is a rare illness I know that much.Everyone on here has a different story mine has been a positive one.Might just be my mindset !,hope this has gone some way to explain why I voted disagree.All the best Mickt.

daveD profile image
daveD

I was just informed by GP that i had Polmyalgia Rheumatica WOT, given Tablets for this & that, and left to get on with strange journey, Without the knowlege gained from this & other sites i would have been in trouble. I dread to think how you girls+ managed before these FORUMS were set up.I owe all my progress along to you ALL.it was hard to explain to family how one felt & to some extent still is. THANK YOU, ALL THE BEST. Dave

jinasc profile image
jinasc

Thanks JeanAllergy (is this a play on geneaology) for that.

I read it incorrectly.

piglette profile image
piglette

I have been very lucky, friends and neighbours have made meals for me, shopped, acted as carers, taken me for blood tests, to the medic and many other things. I always had masses of soup and flowers as well. I was amazed at people phoning me who I did not really know that well. About five of them had a key to the house, so would just let themselves in as I had trouble getting up. The only problem is that they all say how well I look! I blame the pred. and say wait until I get really aggressive because of it. They say it won't be noticable!

Badgergirl profile image
Badgergirl in reply to piglette

That's lovely piglette, the support you have!

Tobytomtom profile image
Tobytomtom

Reading all the above I feel a bit of a fraud.

Diagnosed dec 13 and put on 60mg reduced now to 15' next week 12 1/2 with no 'touch wood' flare ups. Been horrid and had such strange symptoms ie frozen head/shoulders poor vision aching limbs etc etc but this site has explained lots of things. Doctor also been great and consultant at hospital, once realised I was a fairly intelligent 50 something, talked to be as if I had a brain !!!!.

Good luck to you all suffering more than me

tomasina profile image
tomasina

I think it is very difficult for people to understand how dreadful one is feeling because, in my case, I look so well, and I feel a fraud, although I make a point of getting to bed early, which is a bit anti-social, but very necessary. I also pace myself much more than I ever would have done.

Tomasina x

Nones profile image
Nones

PMR has left me very isolated because nobody had ever heard of it and they didn't know what i had. Neither did i. So they just kind of moved away. Now i'm really trying to be more social but life is hard when you can't move and have to have a couple of naps every day. wish i had help preparing food etc but ...