What I am hoping to do is collect experiences from members both in terms of reinventing our role and where we can seek professional help to do it.
Almost all of us have had to make a total u-turn when PMR or GCA turned up. Some have been just inconvenienced by the limitations they and pred bring with them, but some have been stopped in their tracks and faced with giving up successful careers - and adjusting to the financial implications of such a step.
S4ndy's post today was the starting point - she replied to another post and I asked her to raise a new thread about it. I will do the same if I come across other particularly relevant stories and then list the links in this post to create a onestop shop post. That will mean I can keep it relevant - I hope I can make it work but if I have control of this post I should be able to edit and amend.
Now it is over to you - I suggest you write your post about how you reinvented yourself or how you accessed financial advice and assistance if you needed it. Then reply to me here with your name and a short outline plus the link to your post if you know how.
Thank you in advance.
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I was in this position but as it happened gradually I struggled on far too long, even becoming self-employed so I could try and work a few days a week and rest the other days. Eventually I had to admit I wasn't in a fit state to work and it was damaging my health to try and do so.
I've ended up on benefits but it was a minefield and I got turned down initially, you need expert help to fill in the forms. Age UK can help, as can Citizens Advice if they are still going in your area. Also ACAS offers good advice on working with employers to keep you in work. Access to work can help with aids you need and costs of transport to get to work. The main benefits you may be able to get are Employment and Support Allowance (ESA), but it is means tested so if you have a partner who is earning you probably won't qualify. ESA is gradually being replaced by Universal Credit so it depends where you live. Then there is PIP (Personal Independence Payment) if you are under retirement age and Attendance Allowance (AA) if you're retired. They are not means tested ie is doesn't matter if you have earnings or savings.
I was the MD of a successful AIM listed plc when PMR struck - although I didn’t find out what it was for a further frustrating 5 years. From being fit and healthy, full of energy, jogging around 3 miles regularly, I found I could barely get up from my train seat. I was so tired, sometimes I’d use my train pass to do a journey home and back at lunchtime just to have a midday nap. Worse I felt fluey and downbeat and uncertain of what was wrong. I decided I could no longer continue with my city job.
Fortunately I managed to negotiate a pay off which set me up for the first year. I converted the garage into a studio apartment and rented it out mainly at weekends so I could clean the rooms over a couple of days. I also signed up for one day a week to retrain as an arborist so that I could work as a consultant at my own pace. It’s taken a long time to recover. I’m not quite there yet. Last year we downsized which has given me more flexibility financially. I’m so lucky that I could do this or I’d be lost.
Sounds like another terrible PMR journey, sorry to hear. But it sounds like your positivity and resilience is finding a way forward. Dr Mackie recently wrote a blog about how when PMR hits young it hits particularly hard. I lost my best earning years and was unable to do the work I loved. And when I tried to get benefits I was treated as a malingerer even though I'd been working all my life. I wish I could work
I'm sure that PMR hits a lot of women in their 40s and 50s but it isn't picked up because GPs aren't looking for it, that was the case with me although it 'only' took about a year to get diagnosed. They are probably sent packing and just told to do more exercise or that they are depressed, or they have fibromyalgia
My gp sent me straight to a rheumatologist who - god knows why not - didn’t pick it up. I think because I had a bursa in my right hip it wasn’t bilateral pain - well it was but one side was worse ! I had some guided steroid jabs in my legs by a orthopaedic surgeon , then saw a spine specialist because I also have scoliosis and wondered if that was impacting on my hips ( no it wasn’t !) a neurologist who suggested I just had a cold , a private gp who put me on HRT which helped , gp offered medicine and therapy for depression , tested me for everything under the sun including thyroid, parathyroid , then met an old friend for lunch. She watched me get up from the table and said without any prompting , I think you’ve got PMR !!!! Bingo !
Yes, will do Pro, however it will be referencing any aid we might get here in Nova Scotia for low income, disabled seniors....which isn't anything to write home about. Lol.
My experience of PMR was a 'slow burner' to begin with. I worked mornings only in the nursery class of a primary school, and began to notice I was having difficulty getting up off the floor when engaged in a floor activity with the children. I constantly felt stiffness in hips and knee joints and also pain in neck and shoulders.
The extreme fatigue had the biggest impact though with a complete loss of strength & stamina. My job was very physical as you'd expect when caring/teaching 4-4½yr olds, so to suddenly find I wasn't able to lift resources in & out of storage was quite disconcerting.
The symptoms became significantly more uncomfortable and troublesome until I was advised to see a rheumatologist, who then diagnosed me with PMR.
Eventually it became obvious I was struggling and not at all well and so I went off sick. What I thought would be a week or two, turned into several months of sick leave.
I began to improve again and after consultations with my headteacher, the SLT, OH, & HR, a phased return was agreed with limited duties and reduced hours to begin with.
This seemed to work initially, but as soon as I was working 'normally' again, (approximately 6wks after my return) I began to flare and feel poorly again. This resulted in another long period of sick leave.
My statutory sick pay ended as I'd exhausted the maximum number of weeks I was eligible for it, but my union rep told me I'd be eligible for Employment Support Allowance (ESA) Sure enough I was, so I claimed and started to receive the full amount that could be awarded within a few weeks. It was executed quickly and efficiently.
Unfortunately, after yet another attempt to return to work, the same scenario happened and it was finally decided that after a medical (arranged by the education authority) more meetings with HR,OC, headteacher and Union rep, the best course of action would be to apply for full medical retirement. I knew in my heart o hearts that I simply wasn't capable of doing my job competently any more.
I was granted full medical retirement and also remained eligible to continue receiving ESA until I draw my State pension in March. I've been medically retired for almost 3yrs now.
I adored my job and being unable to deliver the early years curriculum in a fun, exciting and energetic way any more, almost broke my spirit. Suddenly I'd lost my identity and felt worthless, useless and very lost.
As time has progressed, I'm now able to see that I didn't really have any other choice and my health and well-being has benefited more than I ever could have imagined since retiring.
Yes...I've lost some aspects of my life pre-PMR , but I've also discovered that new doors have opened. Life is still challenging but it's good too.
May I suggest that people be requested to add a couple of words to begin the title of their own post which references this one. E.g.: Reinventing myself with PMR/GCA? Or something like that? Which should bring up all or most of the posts in future searches?
I got PMR at 52, proper diagnosis at 54. Now 64 years old and on the same dosage as at the beginning after many many flares for various reasons, some of them not clear at all.
At the time PMR arrived, I was at the height of my private therapeutic counselling practice. At least it was not physically demanding! And at least I was self employed too. I managed initially but it got harder and harder as the years went by because OA arrived and was very aggressive ( enhanced by the Pred.?). By 2014 I couldn't walk at all well and needed both knees and a hip replacing. This didn't happen until 2018, by which time I also needed the other hip done, because my local orthopaedic surgeons refused to operate because of my weight which has been a life long issue. The pain was constant and significant and also involved my back, shoulders and pelvis. no painkillers worked, including morphine. The steroids weren't really helping the PMR much, and increasing them didn't always help either.
I reduced my workload bit by bit. I had always imagined working well into my 70's and counselling was my passion, but, although it took me a long time to decide to retire, I knew that the time had come when I felt like I was in a worse state than my clients and lost all my enthusiasm.
That was in 2018 after my first joint replacement. My last one was in February 2020 and we all know what happened then. I made a good recovery at the time, but the last 2 years have been my worst- a lot of pain all over, arthritis in my foot, nausea over a period of 18 months and horrendous insomnia ( caused by the Pred. but much worse recently). I did get a very small amount of PIP before my ops but not for very long. Getting a blue badge has been extremely useful and I hope I can continue to have one. I have very recently got a "Rollator" which does help me to walk a bit further and helps my balance.
I don't feel I have been able to re-invent myself. I can't even look after myself at home- walking the dogs, cooking , any cleaning is all beyond me at present. I became a school governor but had to stop as I couldn't manage all the reading, meetings etc. There are so many things I want to do but can't.
One big decision this year has been for me and my husband to travel as much as we can and not wait for me to get better as that doesn't seem likely to happen.Carpe Diem!
First trip is to Costa Rica in February. Our travel agent has had quite a lot to factor in to find a way for me to manage it, so I am hoping that I will survive it, maybe even enjoy it?
I’m not sure if we are allowed to jump in & ask a question, but here goes…I have 11 medical issues now & cannot get travel insurance for outside Europe without paying £4,000+ for one single holiday. I was wondering if you could tell me who you got your insurance through, please? Our hobby has been travel for 43 years, & we are very unhappy that our planned holidays cannot go ahead this year, one was to celebrate our Ruby wedding anniversary, which happened during the pandemic! Hope you enjoy Costa Rica! It was on our list! S x
To cut a long story short, we have been with staysure who were ok until I told them of 2 upcoming scans and they cut off all my medical cover! They were not at all nice about it so we are not staying with them. Just waiting for the PET scan result before finding a different insurer. It’s a minefield! Could suggest Worldwide Insure as they have been recommended to us.
Hear, hear! We were with Staysure for years. Then I got medical issues, just 3 of them by then, I think. They wouldn’t renew our annual insurance. Since then we’ve been unable to find anybody for long haul travel, where the insurance money can be justified! We could afford it, but I don’t like shelling out thousands of pounds without any ‘reward’ or something of substance!! With that money we can have four weeks of European holiday! I’ve tried 30+ now & not found anything, I will try worldwide insure, thanks very much indeed. If you find success would it be possible to let me know…in private chat, naturally! Good luck! We will be looking too! S x
I have just replied to Heron and, given that I am the person who was going to beat GCA & PMR in 6 months (It's now been over 3 years), I've had a tough old time getting used to it - if indeed you ever do. So I thought I'd send you a few lines.
There's a stark contrast that I believe many of us faced when one minute we were rockin' and rollin' and the next moaning like buggery! Before being admitted to hospital, I was asking to visit Dignitas. Never had I felt so ill - ESR 109 and double vision. I was so sure I had something like sepsis.
I have battled with myself until I recently found a very good therapist and life coach who is in remission from an auto immune disease. She's taught me loads of things but the main thing is that you can't flog a dead horse and that you now have to come to terms with doing what you want to do but with a different body. Don't judge yourself by how you used to be but you can be creative at how you approach things. I used to be hiker, a biker and a gym bunny. I still walk, with a 30 minute walking-for-health group. I still ride a bike but it's a static one so I can stop when I feel I've had enough which is usually about 10 minutes. I still do exercise - 15 minute online seated yoga! Finally I've taken up crafting as it's almost meditative and that helps a lot.
Also I'm getting rid of my guilty feelings of not helping out at home by simply thinking of my body as a separate entity and I'm now able to say 'sorry, no can do that as my body says no'. It's not me saying 'no', it's my body therefore it's not my fault!
Sorry, not sure how to find links etc but I can write for Britain and I'm currently learning a lot from my therapist which I'd be happy to share - however everyone is different as you already know.
I think that producing a book on how people have coped with be a great thing to do, I've thought about it myself, just to show the newbies that there are others out there just like them!.
I worked at two comprehensive schools in London. My hours were 8-4. When PMR struck I started coming in at 7.30 and then leaving at 2pm. They sent me to an occupational therapist to tick the box. (Are you sitting in the right chair). They were vaguely sympathetic unless I really would need to reduce my hours. I knew they would cut me loose if I really needed to cut back my hours. Since I am a hardy baby boomer I just got on with it (and I needed the paycheque and liked my job working with young people).
Prednisilone helped immediately and I think I did not have too rough a ride. The saving grace was Health Unlocked. Absolutely there every day for every question and way better than the medical community.
Sorry, don't know how to do a link so maybe you can cut and paste this. "Reinventing myself with PMR" - I have had PMR for 9 years, starting at age 62. It hit overnight like a sledgehammer and stopped me in my very active, energetic tracks. I was a body builder for 40 years, ran 3 miles or biked daily, kayaked, climbed mountains, and rarely sat down. After caretaking for both parents and working with 800 students and a difficult administrator, the stress (one assumes) pushed me over the edge into PMR. It took a year and many doctors to diagnosis. Those early years were difficult but manageable with steroids. From the beginning, my rheumatologists (old and new) and GP have always called my "case" unusual in that I still kept up with my various workouts and physical activities. I did not fit the typical guidelines. They all agreed my issues might be "mechanical" due to injuries and not PMR. Even so they weren't sure. Over those 9 years, I had meniscus repairs, two knee replacements, shoulder and hip surgeries which always helped some but did not help the fatigue, weakness, lack of stamina, or pain. As an elementary art teacher, I had good health insurance (here in U.S.) and a sick bank I could draw on. I would be off two to three months every year for surgeries and recovery yet thankfully kept my job. Eventually, I found the stress of teaching too much so retired just prior to COVID. I found a level of activity I can sustain, far less than my old super active self. I'm so thankful to be able to walk (2 miles, no more running), lift weights (very light only 2 days a week but not all the time), swim, hike small mountains, kayak, and bike. I'm currently at 5 1/2 mg split dose and reducing. I do manage to travel (usually alone as hubby won't travel) to Maine, Florida and other places each year. I've just been approved for Kevlara but my share of cost is $1,000 a month so may have to skip it (that's another story). I miss my old energetic life terribly and hope some day to get off this unwanted rollercoaster ride.
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