Relapse...years later

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Relapse...years later

Postby Gilly52 » Sat Feb 06, 2016 11:30 pm

Does anyone feel they had strong symptoms years ago...recovered....in remission...only for it to all to come flooding back years later?
Well this has happened to me, I had symptoms at the age of 30, I carried on working for 3 years, by then fatigue was getting the worse of me, so I gave up my job. After 2 years at home, taking life easier, I had my hubby and an 8yr old son to look after, but my Mother lived close by so I got a lot of help from her too, as my hubby then worked shifts. However after this period my health improved to a point I felt I was able to take an accountancy job for 6 hours a day....I loved the job....and for the next 14 years I enjoyed relatively good health, I had the odd hiccup here and there for a couple of weeks, but always managed to get back on track, sadly I lost my dear Mum to cancer in year 7 of my good health period.

It was a tonsillitis virus that brought me down aged 49 together with the sudden start of a long, hard menopause, I am now aged 63 and have never really recovered to what I call normal health. I had to give up my job again, but sadly this time I never got to a point where I was fit enough or reliable enough to take up another.post..such has been my experience with fibromyalgia and depression.

Some days are better than others, but it does get a little like a hamster wheel when the pain and fatigue are foremost at the same time.
Medication wise I take Amitripylene at night...which has helped with sleep....shame about the hang over feeling in the mornings, ( my worse time of day )'I have experimented taking the drug early evening and later, but cannot say I have found an ideal time for my self.
For the pain I am Pregablin, I have such a sensitive system that the side effects play a big part, sometimes on a bad day I wonder if it is working, but looking back rationally I think I would be worse without it. The worse side effect has been the weight gain with the drug, and I do not get out as much as I used to, my walking has slowed down so much, due to lack if energy and fatigue ( I also have an under active thyroid ) so exercise to burn off calories is a difficult one.

It is just my hubby and myself at home now but I find I am asking him to do more jobs to help me...e.g. Vacuuming for me is a mammoth task in a 3 storey house, so now he does it...to be fair without complaint...but I feel guilty for doing less around the house.

Fibro fog is a hard one for me also, my hobbies of reading, jigsaw puzzles, knitting, take a nose dive when I feel fogged up..I then have no concentration. However I have got myself some adult colouring books which to be honest I am enjoying. I also enjoy the radio a lot, TV I always have been fairly choosy here..I enjoy documentaries, travel, animal programmes as opposed to soap operas & films etc...but we are all different with out pastimes, generally it is in the evening that I feel my best that my hobbies come into play...when most people are thinking of retiring for the night !!!!
During my 'well' period we did a lot of travelling through Europe, saw many different countries and their cultures a passion for me, I am certainly glad I did it all then, but at times I feel frustrated that I never visited New York which was on my bucket list ! I would feel happy if I could visit many of the places in the Uk now that we have not visited in our earlier life, planning is difficult and I find a few days away takes me a while to plan, pack clothes and all the medication needed...also the unpredictable Uk weather, does not encourage me to travel too far from home....for these times I have to use a wheelchair.

It would be just interesting to know if some people have experienced remission and then suffered relapse.
Thank you for reading my rather long post !
Gilly52
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Re: Relapse...years later

Postby scoke » Sun Feb 07, 2016 12:36 am

Yes - just replied on another post that id read somewhere that flares get closer together, longer, more symptoms and more intense each time. I had years off - mostly seeming to come during hormonal chsnges do i hoped the menopause would chase it all away, instead, it's here fir good. Most of the physical stuff i did is just a memory, i can also no longer do silver smithing, knitting, jigsaws are getting so my back can't take it! My reading and puzzles, card making, cross stitch and painting all suffer at times - you have to leave puzzles or reading and do something else if the fibrofog is bad, or i might be unable to hold scissors or the needle or brush. Just have to keep swapping between hobbies!
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Re: Relapse...years later

Postby divingforPearls » Sun Feb 07, 2016 12:15 pm

Yes, I think so, I find this fascinating; I've had fibro since 1998, the usual excruciating pain and tiredness etc. But in 2013 I got married, and for 3-4 months around that time I did surprisingly well - not the 14 years you've had, but 3 months was a big deal to me - I walked up Glastonbury Tor 3 times in one day without pain repercussions (very surprising to me), and on my wedding day, I not only stood up all the way through the ceremony without an hint of pain, I danced for a couple of hours that night, thinking "it'll be worth the pain in the morning", but...there was no pain in the morning! It was a very happy time for me, my serotonin levels must have been consistently high I think, and there is some suggestion that fibro suffering is related to serotonin levels - I mean getting married is not without its' 'stress', but I was ever so excited and happy, I felt supported and loved, all other worries melted away into the background. There is such a thing as 'the honeymoon effect'. :-D :-D :-D But then you know, back to reality happened I guess, with its' school runs, housing situation stress, money worries, the world! etc! :crazy: ----> pain again. But this period where I was doing really well just showed me that its' not a physical joint/ muscle problem like osteoarthritis, but a neurological problem. My joints are FINE really, it's just there's something wrong with the brain / pain pathways and my serotonin levels???....
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Re: Relapse...years later

Postby jules50 » Mon Feb 08, 2016 7:20 pm

I have had fibromyalgia for about 12 years now and am in my sixties. I have never gone into remission but don't really have flare ups. I just seem to be in a constant condition. Although if I overdo things I am in more pain and damp or humid weather makes things worse.
Like you I have an underactive thyroid and what with anti depressant tablets, and a hysterectomy a few years back weight gain is also upsetting.
Like you, I am better by the evening but try to keep up with craft hobbies.
Don't feel guilty about your other half doing the heavier housework, I think it gives them a chance to feel they are doing something positive when faced with their partners chronic pain.
Hope this helps a bit we also only holiday in the UK now.
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Re: Relapse...years later

Postby Patsb » Tue Feb 09, 2016 4:15 pm

jules50 wrote:I have had fibromyalgia for about 12 years now and am in my sixties. I have never gone into remission but don't really have flare ups. I just seem to be in a constant condition. Although if I overdo things I am in more pain and damp or humid weather makes things worse.
Like you I have an underactive thyroid and what with anti depressant tablets, and a hysterectomy a few years back weight gain is also upsetting.
Like you, I am better by the evening but try to keep up with craft hobbies.
Don't feel guilty about your other half doing the heavier housework, I think it gives them a chance to feel they are doing something positive when faced with their partners chronic pain.
Hope this helps a bit we also only holiday in the UK now.

Ive often wondered about flare ups as I too am in constant pain.ive changed our bedsheets today and done a bit of housework and now I'm in agony with the pain in my left hip and groin and cramp in my foot. :evil:
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Re: Relapse...years later

Postby Gilly52 » Sun Feb 14, 2016 11:25 pm

Thanks everyone for your replies.....it is interesting to read....how we are similiar, but in the bigger picture different.

I get times when I am in constant pain, damp cold weather does not help at all, with fibro my GP told me that our internal thermostats are broken !! I believe this is true....I am always. Feeling be it hot or cold...it will be different to anyone else. !!!

In my 30's my illness was part hormone related.....I had for many years suffered with bad PMT, it was only when everything was going wrong the doctor relented and gave me hormone tablets to cope....and to be honest they helped a lot at that time.

When I got ill aged 49 with initially a throat virus....but then a sudden menopause....hormones all over the place again, but he insisted then I had to go,through what my body wanted to,do, the hormone treatment in my 30's was no good for menopause, I felt my body was in shock really and was very fatigued by this stage....hence resigning from my job.
Obviously menopause does not go on forever....but I have very much stayed on a roller coaster ride with fibro and the limitations it puts on our lives, but somehow we all have to hang on in there....take rest when we need it..Listen to our bodies....keep up our hobbies etc., as and when able .....at this point I just think roll on Spring, the days are getting longer and we hope the sun will start shining for us all.

Gillyx
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