Family, parents don't understand my diagnosis

[alexamarie]

I am 50 y.o mother of 3. I have a 15 you daughter at home. The others are grown, have grandchildren. My parents are 76 move around like crazy and since I have a sister with cerebral palsy. They think I am a sissy and don't understand disgnodud. I have searched for a book or domething, but I know my parents won't read it. How do you explain to them your not feeling well and your diagnosis? I am a RN.. not able to work with this condition. Thank you for any responses.

[PMRpro Ambassador]

Would they watch a DVD? Or read a short booklet?

This support site sells both, made by themselves for their members but also available to others - look at the shop link:

pmr-gca-northeast.org.uk

I can imagine the problem - but I'm a bit at a loss to suggest much other than the DVD/booklet. There is a YouTube video too - but everyone on it looks awfully well!

[Runrig01 in reply to PMRpro]

I have had pmr for 4.5 yr, I was 46 when it started. I'm fortunate with my husband and daughter, it my mum who is 74, and has no ailments, really doesn't get it. It's frustrating as each phone call she says "I don't think these steroids are doing you any good". Cannot get through that it's not curing me but treating the symptoms. Arthritis research do a booklet you can download. I also work as an RN which is challenging but I manage with the support of occupational health. Good luck 😃X

[DorsetLady PMRGCAuk volunteer]

Hi alexamarie,

Sorry to hear you're still having problems 'educating' your parents.

If they won't read a book, then perhaps a leaflet, short and concise would be better. If you ring PMRGCAuk on 0300 111 5090 they will send out info pack. I know you say you're not very good with computers so that might be best way.

As runrig01 rightly says, you can get longer leaflet from arthritis uk - see pmrgcauk.co.uk, on left hand side of home page - bring up PMR or GCA - both will lead you to leaflets on arthritis uk webpage which you can download - if only for yourself.

If that doesn't work, then think you just have battle on alone - unfortunately - apart from your friends on here of course.

[piglette]

Hi Alexamarie, I have decided that no one is really interested in other people's illnesses or even their problems if it comes to that. There are a few people with empathy and we are lucky if they are our friends and family. If I can't do something I just say so, great if I get sympathy, but most people cannot understand why I can't carry on as I did before. I must admit I have wonderful neighbours who sometimes cook for me and drive me, so I suppose I should not complain. I could be in a much worse position.

[trish29]

Hi Alex Marie.i really feel for you ..i am around people all the time who are so full of energy and keep pushing me to do more !! Last Summer I was treated very badly at a BBQ by a very busy Daughter-in-law and in a Garden full of Family and her friends she shouted at me and told me I was PATHETIC because after 12 years then I was still on high steroids and my weight had gone back on ..nearly a year later I am still up and down on the Steroid.. I am now learning to say no I need to rest, but because I have just had a wonderful 70th Birthday including a Party for 85 people..i needed a week in bed after it because I had a Flare-up in my legs I now have to be stronger and say I can't do anymore .. My only comfort is talking to my Bowen Therapist who I am seeing today but the moment I get home I am pushed in the Fast Lane again. I have a good Rheumatologist who listens to me. I have Always found Kate Gilbert's Book very reassuring especially if I am having a flare ..i wish you well ,listen to your body . I say to my partner and my family that the more I am pushed the more my PMR shows its ugly head ..best wishes trish 29

[Parijm]

I share the same opinion as feel others have no idea how debilitating we can feel which for me is morning stiffness in arms and legs. When I have times of fatigue or have issue with something 'extra' such as tendonitis in one arm at present, I sense from comments that 'we all get aches & pains as part of getting old'. I am completely frustrated by the lack of things I can do without help, or when I do what I can the result can be further muscle aches. No one knows what PMR is like unless they have it. It's a hateful condition.

[alexamarie in reply to Parijm]

Thank you for the reply. Worried my husband has tendonitis.. we had mold in our home.. is this all caused from mold. ????

[PMRpro Ambassador]

It wasn't until my back seized up totally and I was in hospital that it penetrated to my husband how poorly I could be with PMR. That hospital stay added in atrial fibrillation to the mix which scared him to death! But he did see very clearly how bad it was - I don't recommend it as a way to convert the sceptics though!

[alexamarie in reply to PMRpro]

Thank you for the kind reply. I now have coronary artery spasms, lipids high. My chest bone hurts so bad.. does yours? I think I must have the GCA as well.

[PMRpro Ambassador in reply to alexamarie]

No, never had any problems with my chest bone. That isn't a typical sign of GCA - but you should check with your doctor.

[jinasc]

The DVD that pmrpro steered you towards 'You are Not Alone' was made specifically to overcome the problem with family and friends as we found and others told us the same tale and that it was a problem as we looked well.

Also people came out of the GP and or Consultant and were bewildered, they had never heard of it. Neither had we, till we were diagnosed.

It was made with Consultants, Opthamologists, Physio's et al and with people who have PMR & GCA. Most importantly there is no medical jargon, the medics all co-operated and as they said at the end of the day, they had learned as much from us as we had from them. The DVD was launched at the Centre of Life in Newcastle and over 300 people attended on the day. Rheumatologists were given 5 copies and they gave them to newly diagnosed patients. They helped spread the word.

We ordered 1000 copies and have since had a re-run. They have gone to many European countries, USA, Canada, Australia, New Zealand and a few others.

Whereas it can be difficult getting people to read books, watching the TV seems to make a difference they will sit and look.

The booklet is aimed specifically at PMR and GCA patients and includes Tips and Tricks supplied by patients on how they managed both. I am not saying they work for everyone, but actual experience by others who have tried them and found they worked is helpful.

[Pebble-Sue55]

I know how you feel, last year when I first started with PMR and could hardly move, friends and family were really concerned, they still are, but now if they ask how I am, when I tell them how I 'really am' they glaze over and look at me politely, when I try to explain that I can't keep up with them any more, I get the feeling they think I am milking it. One person said 'did the tablets not work then?' Lol

[alexamarie in reply to Pebble-Sue55]

So, really what is this autoimmune disease. I am having chest pain and have had a cardiac cath. Coronary Artery spasms??? so then do I have the other disease . ??? I forget what it is called. Thank you so much for responding.. sorry for the delay.. I am not good on the pc

[Pebble-Sue55 in reply to alexamarie]

Hi alexmarie, there are people more qualified than me on this site, who can explain the full definition of what Polymyalgia actually is, and what causes it. Also if you Google PMRGCAUK there is all the information to help you make sense of what is happening to you. It is not a pleasant illness to have and as well as all the main symptoms such as intense pain and stiffness, being unable to get out of bed, or sit because of buttock pain, there are other nasties which appear along the way, such as fatigue, tendonitis, brain fog. I have also experienced a few spasms across the arms and upper abdomen, which leave my arms feeling heavy and weak for a few days. My GP blames this on the Pred and pushes me to reduce more quickly than I am comfortable with. You can still have pmr alongside other illnesses so that may explain your trouble with the cardio symptoms, a good rheumotologist would be able to advise you. We are all in it together and have to be firm when well meaning people try to jolly us out of it. It takes time to burn itself out, and in the meantime we have to learn to pace ourselves be patient and above all be kind to ourselves. Hang in there.

[alexamarie in reply to Pebble-Sue55]

Thank you

[PMRpro Ambassador in reply to alexamarie]

PMR is the name we give to the symptoms - many painful muscles - but that isn't the disease, that is an underlying autoimmune disorder that causes your immune system to attack the body tissues and damage them, leading to pain and inflammation.

The autoimmune part of PMR can also do damage to other parts of the body - and in my case it damaged the electrical cells in the heart that trigger the heart beat. If you have heart problems that seem to have started since the PMR first started or soon before then it is probably a good idea to get it checked out. I have atrial fibrillation as a result but there are other things it could cause too.

According to the Cleveland clinic site, one cause of coronary artery spasm is inflamed cartilage - which I suppose could be due to PMR. But I can't find anything that suggests that vasculitis is a cause.

[alexamarie in reply to PMRpro]

Thank you

[alexamarie in reply to Pebble-Sue55]

pebble sue, so sorry, I am with you on that. I also was exposed to mold 4 years ago. I have the double genetic defect that makes me sick around mold and cannot get rid of it in my body like normal people. I have tried to explain this to my family as well. They just moved into a mold infested house. MY husband notice, me, the neighbors smelled it across the street. I told them the dangers for my sister with cp. My mom yelled and said "Are you really concerned?!!! Unbelievable. My husband tried to tell them. My brother says he wants his sister back from 4 years ago. I said , I am here but hidden. Except now, don't judge me. God help us all. Sorry,

[Pebble-Sue55 in reply to alexamarie]

Poor you Alexamarie, I have found that unless a person has experienced illness, whatever type, for themselves, they just don't understand the implications

[Pebble-Sue55 in reply to Pebble-Sue55]

Sorry about that, pressed wrong button. People don't have the patience to deal with long term illness, they run out of patience with us, but at least our friends on this forum have the knowledge and experience to help us along this 'Long and Winding Road' 😊