Im hoping this doesnt sound weird or strange but Im looking for a PMR friend on here, where we can share how our days are going and offer each other online support.
The forums are great but you dont really get to know anyone and their story because of so many posts.
My story is - I was diagnosed with pmr just after Christmas. Im 64 years of age, female, live alone, family not really interested in my illness so I have no support at all.
Im trying to reduce my dose of 15mg but its not going too well.
Im normally a very fit and active person who has lots of hobbies but this illness has reduced me to an achy old bag!!
I have a great sense of humour and most days try not to let it get me down but like everyone I have bad days, full of anger and 'why mess'.
Id love to find someone on here to share our experience as an ongoing thing and hopefully make a good friend in the process.
Many thanks.
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You might be surprised - many of us have become friends here and the nature of both the disease and this particular forum is that you will always find people who can empathise with today's bad place and also hear you having a shout in anger when you need it. Once you settle into this forum you will be able to identify people who will help you - and having a few of them around means you see lots of different approaches to living with PMR. and that there is always someone who will respond. This is a very international forum and that means it is alive 24/7 - someone to hear in the middle of the night too.
Good morning, if you are looking for a place to share your story about PMR/GCA and all the "delights" that go with it then you have come to the right place. The forum is composed of many people from across time zones so there is always someone around to listen and/or chat to as well as being happy to talk about their experiences with our ailments and the things they have done/are doing to make their lives easier and what for them has or has not worked.
Yes, if you reach out, you most certainly will find folks with whom you can share your deepest fears and successes. We all need support in a world where “invisible illnesses” are not recognized or given anything but minimal report. I don’t know your name or locale, which is helpful when communicating. I’m in the USA and am have developed a supportive, lovely friendship with a lady in the UK (8 hours time difference). I am a couple years older than you and have struggled with obtaining the correct, initial dosage of Prednisone to combat the aches & pains of PMR. On 10 mg./day, it has been a long 8 months before I finally learning from the wonderful Administrators and loving participants on this site that 15 to 20 mg. was the only level that would reduce my pain and also diagnose my condition.
Thankfully, I just located a rheumatologist 3 hours away who has found I most probably suffer from Spondylitis (AS) perhaps with PMR as a complication. After an few MRI’s and blood work, she has scheduled me for immediate transfusions of a TNF Inhibitor in lieu of Cosentyx or another interleukin (IL-17) inhibitor. Since I can no longer stand or walk any more than 30 minutes at a time, I am grateful to have found “hope”.
Yes, this illness can make us feel old and decrepit but with exercise, diet, and the correct medications for our body, we can go forward...
The initial challenge is to settle into the fact that few get out of this illness quickly and without lots of side effects from the medications (which are often as awful as the illness).
As one gentlemen told me, at least PMR is usually resolved; whereas, Spondylitis does not go away...life long illness.
I also have few people who support me, especially after the last 7 months being bedridden and usually having to cancel any plans made with friends. Even friends who are nurses have NO IDEA how disabling this condition can be. I’ve recently realized numerous friends and family have simply stopped calling, obviously avoiding me. While I have maintained humor and have not gotten depressed often throughout this past year, I suspect most just do not want to hear anything but positive things about my condition.
Well...that may be some time before things look up. However, the “good news” is that my health insurance is paying ALL the $6000 medication costs plus administrative costs for the TNF transfusion, which may or may not do anything more than lower my immune system even more.
I am a 67 year-old retired insurance adjuster and lawyer who lives in the magical, beautiful mountains of southwestern Colorado. I am married to a sweet man who has stood by me through years of low back issues. My two fur babies are Red Standard Poodles, who provide humor and love every hour of the day. Children and grandchildren live far away and are, understandably, self-centered in their life’s explorations.
My Buddhist beliefs have helped overcome the constant level of pain. It is training to get “out of the body” and let the mind support our recovery.
In order to have friends, you need only reach out...be a friend. Share your thoughts and disappointments and frustrations. I suspect most have had similar experiences and can relate...
We all go “up and down” on this wild roller coaster ride of life (and illness). May your journey be more “up” than “down”
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Hello new friends! Need guidance!
