Trying to put the pieces together

[bunnymom]

Am wondering if any out there have a similiar experience prior to PMR. Two years before PMR I had horrific fatigue that did not improve with rest. Went on anti depressants which helped to a degree then brought side effects of their own 35 lbs of weight with no end in sight. That's why I have been so weight conscious while on steroids. I know how easily I can let my weight creep up on me. Anyway, I put it off to the change and crazy hormones or lack thereof. I had no pain at all and now am not plagued with fatigue like so many others. I only notice it if I am reducing too fast. I do have to pace myself when being physically active but that is a different kind of feeling for me. I wonder now if that was the very beginning of PMR. Any one had anything similar?

[DorsetLady PMRGCAuk volunteer]

Hi bunnymom,

Could well have been, although depression itself does leave you feeling fatigued I believe.

I think many of us start PMR in a variety of ways which don't confirm to the perceived 'normal' symptoms, which is why we get so far into the illness before it's diagnosed correctly.

Glad to hear you are getting along a lot better now, but you still need to be careful nevertheless!

Take care.

[SheffieldJane]

Definitely prior to diagnosis and treatment. I was doing a few little jobs promising myself I'd lie down soon and then sleeping for hours at a stretch in the afternoon. I would wake feeling scared and terrible. I was ashamed of it as if it was a kind of depressed self indulgent thing. I am better than that now and like to go out and do stuff, I tend to be pretty useless the day after though. I have been poor at keeping up friendships because I could not explain how I was feeling. There has been quite a lot of collateral damage when I look around. Still we're all still here, larger than we'd like but still lovely.

[bunnymom in reply to SheffieldJane]

I think only in hind sight do we see how impacting this illiness has been. That is why this forum is so important... To be understood and validated, informed as we live life and make all the necessary changes. My poor husband said he'd go to the rheumatologist with me to plead my case for slower reduction lol! Last weekend was bad as I was too low on meds. Better now. If new dr doesn't agree I will go back to gp who did. I am paying them after all!

[Rose54]

Hi

I was informed 6 years previously that I had a virus which later they decided was CFS. Following year another virus and time of work ,this has gone on without further time off work till July 2015. I woke up one morning and was unable to get out of bed and for 4 months hardly able to do anything due to pain and chronic fatigue.

However I have been back at work full time for a year now but still get the odd occasion when nothing will work only sleep .But I have cut back on a lot of things I did for other people and look after myself more .

I truly believe 6 years ago was the start of PMR but due to also having a thyroid condition lots of symptoms where blamed on that .

Rose

[PMRpro Ambassador]

In my mid-20s I had an episode of something which today would probably be diagnosed as ME/chronic fatigue syndrome. It was horrendous fatigue, I couldn't stand for more than a few minutes, and I permanently felt nauseated - lost a load of weight! It lasted for about 6 or 7 months and then improved - although the fatigue took a good 4 years to get to a stage where I could get up the stairs without going weak at the knees! I had raised liver enzyme blood tests then (often found in PMR) - but by the time I saw a liver specialist all was back to normal and I was getting better. His verdict was "Probably some viral infection, we'll worry if you don't get better".

A few years later I also had sweats and fatigue that my gynaecologist in Germany thought was possibly early menopause and put me on HRT which seemed to help most of the problems - but that was when I was in my early 30s and my last period was eventually when I was 57! I stopped the HRT at about 50 when there was one too many scare story about the risks. It was only months later the first signs of PMR started, very insidiously.

In retrospect - it was the start of something but who knows what!

[SheffieldJane]

Group hug ❤️