I have been going through some old discussions and I think I now know how I must deal with my problem. I am fairly certain it is a flair of my existing back problem rather than a PMR flare. To be honest, I think any health professional would be hard pressed to distinguish between them unless there is a flare in my shoulders and hands, which there isn’t.
So many thanks to Anhaga for the discussion ‘Injury and flares’, to Eileen for the very useful links in the discussion she started ‘Pacing in chronic illness’ These I will study carefully and make myself an action plan. To BettyE for her ‘PMR and muscle strain’ and to Michdonn for ‘PMR and Exercise’ I am grateful to you all.
Am I alone in this ? – One of the things that really gets me down is the embarrassment of having to tell people I am not better!
Hello Kate - I'm still relatively new to this, so I've got no constructive input re PMR or old back pain, but I just want to say I agree with you about the incredibly useful info we have gleaned from the people you mentioned. I have started copying and pasting the info into a Word doc and I'm even thinking of making up an index in Excel so I can find things easily (terrible memory at the mo!).
I know what you mean about people thinking you're better because you look ok. I was so disappointed at work, when a colleague came back from holiday and said "my mother had PMR a few years ago - it was as though she was on speed for a year - she couldn't sit still for a minute". This came after me carefully explaining to colleagues what was wrong with me and how I might not be performing 100% until I get things under control. The colleague whose mother had PMR is a very strong forceful person (verging on the office bully) and what she says goes, so I don't feel so confident now that colleagues will be so supportive if I turn up late or go home early if I'm having a bad day. Luckily I'm coping with work ok now, so hopefully it won't be an issue.
Oh dear, that's a difficult one. I think you have to remember that we are all different and perhaps the colleague's mother may have been retired. You will find, on this forum alone, that people will experience different levels of reaction to PMR. Some will be virtually housebound while others are 'bouncing' along and every degree in between. Do not allow this seemingly dominant person to dictate how you will be feeling. If necessary you can bring in extracts from some of the papers which are around. Perhaps Eileen can guide you on this and refer you to 'the spoons' which is very helpful. It's more difficult when we are below par to confront someone like that who can undermine what you have told your colleagues. Use this site to sound off and to give advice on how to tackle this if it becomes a problem. Best wishes.
Thank you, Silver49. I'm hoping it won't become an issue, mainly because I'm feeling so much better now. But it's good to know that there are always such supportive and knowledgeable people on here.
I have seen Eileen's link to the spoons theory - she pointed me in that direction very early on. There is just *so much* useful info on here - thank you, all!
Hi Kate,
My experience, after careful consideration, is that these inflammatory (PMR/RS3PE) responses are not isolated to ONLY certain joints. I've had 2 major bouts of PMR/RS3PE, with close to full remission each time. while some joints had a much heightened pain/swelling response. When the remission occurred, I noticed enhanced flexibility in spine and reduction of lower back pain. Specifically, increased range of motion in neck and back, overall feeling of wellness, swagger striding instead of penguin walking. Me thinks the inflammation is bodywide, and the manifestations are different for each individual.
All that is to say: if you have old back issues, they can certainly be exacerbated by any bodywide inflammation that is so well communicated by our vascular system.
I am a realist, and I think these inflammations that visit us will be our companions forever, hopefully quieted by pred and our autoimmune governors regaining their compass.
I also think there is an undiscovered treatment which would suppress this autoimmune overrev. During my second severe PMR bout in 2014, before diagnosed and treated with pred, I was severely inflamed (couldn't get up from the couch or walk up stairs). On Cinco de Mayo, I drank 8 ounces of tequila over 3 hours (6-10 PM) . I don't normally drink much at all. Went to bed slightly sick, and woke at 5 in the morning with a complete remission of joint inflammation. The symptoms slowly reclaimed my body over that morning. Additionally, there is a significant statistical reduction in the incidence of Rheumatoid Arthritis for those with high alcohol consumption.
Best of luck
Kate, you are not alone, we are all on the same crazy PMR journey. Each journey has it unique quirk. But we hash things out and continue on. Think positive, stay active and smile.
Believe me we will all get this condition under control. ☺️
My husband told me I was like the energizer bunny for the first few months after I started pred. This was, I believe, because I was so happy I could do everything I used to again. However as my dose tapered I was struck with fatigue and increasing muscle weakness, so within six months I was no longer an energizer bunny, and in the two and a half years since I have never been so again. Perhaps your co worker's mother was on a relatively high dose for much longer than I was, and may also have been a stronger more vigorous person to begin with. We are all different. I hope that your journey goes as well as it can. And find a few co workers with whom you can share how you feel, get at least a couple of them on your side.
I know what you mean. Sometimes I'm asked if I've stopped taking prednisone yet (not often, hardly anyone knows I've been ill, or that I have to take this medication) but even so I sense they are a bit shocked that I still take it after several years. I can't imagine how I would have managed had I not retired some months before my diagnosis.
Hopefully, it will be ok at work. I have been retired more than 10 years but, coincidentally, I had a colleague who was younger than me who had PMR and Fibromyalgia. As a team, we supported her and covered for her until finally we assisted her to take early retirement as she became more ill with other health issues. I had no idea until PMR hit me how she was coping and only then realised how difficult it must have been for her as she had so much more to contend with. Thankfully, I supported her as did other colleagues. We only know the road WE travel. I hope you have supportive colleagues.
How right you are - we are all different, and this illness and its medications affect us all differently.
The thought of PMR while still at work makes me ache. How does anyone do it.
Re your critical colleague... my mother used to say that other people's troubles are always easier to bear. That's not always true in my opinion but you get the gist.
I'm beginning to realise that I'm very fortunate in that I was diagnosed quickly, and the pred really has helped in terms of pain (I still had some niggling pain in my hands but that has gone now - possibly since I started taking CBD oil). I don't feel tired any more, apart from the occasional spell. The only thing that bothers me now is a brain fog. So, all in all, going to work isn't too onerous for me now. But I do realise that I have a long way to go yet, and my situation could change very quickly. I'll hopefully be starting to reduce my pred next week, so I shouldn't count my chickens...!
Why embarrassment? Chronic illness is what it is - and you DON'T get better in a few weeks. There are a lot of such disorders.
I think the lady on speed must have been on high dose pred for too long!! Because that is the only reason anyone with PMR would appear like that.
I don't know why I am so embarrassed by it. I have had the nerve pain problem with my back running concurrently with PMR throughout this year. On good days I have arranged to go for coffee or suchlike with friends only to have to cancel at the last minute. I have also had to cancel the dentist three times because it is impossible to lie on my back at the moment.
Recently I tried asking myself why I was so upset by the latest relapse anfdthat is the answer - I am embarrassed about cancelling and disappointing people by not being better!!
Is this too much honesty?
I don't think so - but then, I'm a fairly up-front sort of person and feel you need to know all that to be able to acknowledge it and deal with it.
Have you considered myofascial pain syndrome and looked for a therapist who treats it? I found Bowen therapy helpful originally but where I live now that isn't a viable option. Instead my doctor prescribes massage and manual mobilisation by a physio at the local hospital - it has worked very well each time so far but because of the underlying cause it tends to come back after a year or so. The rheumy also gave me a week of i.v. NSAIDs recently when I had excruciating sacro-iliac pain - it worked despite my apprehension! But these are very Germanic approaches so won't be easy to find in the UK. I also have something called needling - and you can find practitioners in the UK who do intramuscular stimulation which has a similar effect.
That's exactly what I thought because I only felt like that at the very beginning on 20mgs. My GP said he hadn't forewarned me as it apparently doesn't happen to everyone.
That is interesting Danrower. I come from a family of heavy drinkers, I am the only one who doesn't drink, and the only one with an inflammatory condition!!! I don't think I will jump on the wagon though, there are a lot of down sides.
My back problem began as an injury as a child and between 1980 and 90 I underwent 3 operations and various other invasive procedures. The resulting scar tissues causes problems now and then. I was wondering if reducing the pred was affecting it. At first the doctor put me on 30mg a day for 7 days, probably to test if it was PMR, and during that time I had no pain anywhere.
It is hard to know quite what to do. The last pain specialist I saw looked at my MRI scan in dismay!
Up to 3 weeks ago I was doing OK. Just got carried away with an exercise and bang. It is improving though, just very slowly and I have learnt my lesson.!!
How are you?
serrapeptase reduces/removes scar tissue -- cannot use if have had certain medical procedures that use fibers or webbing or something to hold things in place
Thanks. I did look at this after you had mentioned in a previous post. I just can't work out if it is OK to take it with pred.