Hi I was diagnosed with Fibromyalgia inFebruary. I have been suffering from different types of pain for a few years but just got on with it. 2 years ago my back began to go into spasm on a regular basis - leaving me unable to even pick up a cup and struggling to swallow at times. I had lots of physio and learned relaxation techniques which helped immensely and which I still use. I was told that my body had developed pain sensitivity due to the length of time I had been suffering and that my brain was sending pain signals as a protection method - even though there was nothing physically wrong.
I accepted this to an extent but I began to go into spasm for no reason whatsoever. I did learn to recognise certain feelings and pain spots before it got to spasm and have learned to manage this.
I often used to get sudden bouts of complete exhaustion and put that down to being tired because I was always in pain. I just used to go straight to bed from work and sleep on my days off.
This was all fine until last December when I suddenly felt as though I couldn't walk, it was too painful to sit, too painful to stand, I felt sick, completely exhausted, very weak, my memory was non existant, I was doing the weirdest things. I had actally being feeling off for a couple of months but this suddenly overwhelmed me.
I had numerous blood tests and a positive rheumatiod factor so went to the rheumatologist who gave me the diagnosis. 3 years ago I was ice climbing, mountaineering, going on rock climbing trips abroad and now I have to put the dogs in the car to take them for a walk cos I can't get up the hill.
Is this it? Will I ever have my life back? I even struggle to open my coffee jar - gotta leave the lid half open!
I am really struggling to continue to work but I am not giving up. Can anybody offer any advice to make things easier? I just get so tired and I ache everywhere - losing the use of my left arm too. The pain is unbearable and I struggle to change the gears in the car - still do it but it is getting harder and harder.
How does this "illness" progress, regress, anything - please guys - I am reaching the end of my tether
Margaret
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landslider
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I wish I could comfort you and say that in every case fibro mysteriously goes as mysteriously as it appeared but that doesn;t seem to be the case with both of us. What often seems to happen as in your story and mine it slowly creeps up on us and initially we put certain symptoms down to stress or overwork and think that with rest etc they will go. They might for a time and then we get other peculiar symptoms and sometimes it takes many years to be actually diagnosed.
When I first had my major flare where the whole of my body like yours did in December seemed to say no and the pain, fatigue and brain fog was overwhelming. I eventually with the help of medication after a year got better than that but never well enough unfortunately to go back to work. I am retired now but would happily still be working if I could. I find not working really helps as if it is a bad day I can get up late or go to bed early and unless it is something that I cannot get out of like a medical appt can just take it easy.
What you need to do is to pace yourself but I know that this is easier said than done when you are at work. Are work aware of your illness could they make the necessary adjustments to make work easier for you, is there any opportunity to work from home some days so it cuts out teh travelling back and forth. Would it be possible to get an automatic car as that has made a big difference to a friend of mine who has arthritis and othere health problems.
What medication have your tried and are you sleeping okay? Have you been on our mother site FibroAction and read up on the treatments that are out there and the other alternative treatments like exercise, hydrothereapy, etc.?
It was strangely good to read your response. Gave me a sense that somebody actually does know that feeling of unexplained exhaustion and pain.
As you may gather it is 3.30am and I am having one of those physically knackered but mentally can't switch off moments. I have to get up for work in 4 hours. I know how bad a day I will have. If someone looks at me the wrong way I will burst into tears and I won't be able to control it.
They will think I've lost the plot but sometimes you just feel so inexplicably fragile. I hate it as I have always been a strong independent person. I am the helper NOT the helped.
Taking Arcoxia and cocodamol but no good. The cocodamol plays havoc with my irritable bowel and makes me more dozy. And that is only 8mg - I was on 30mg which was horrendous. I do need to go back to GP as so bad in the mornings. Takes me about 3 hours to feel human. Sometimes better not to sleep but then I ache even more.
Unfortunately can't afford to change my car. I can barely pay my bills right now as I can't do overtime like I used to.
Like you, I have always managed. I have a mortgage to pay and only my income. No work, no home 😞
I don't know what today to you other than sending love and healing your way ...... Please take special care of yourself when you can ..... Be kind to yourself! X
You never know you might start an upwards surge as for some unknown reason alot of us are better off in the Summer months. Going to the doctors tomorrow and am going to discuss with him coming off heavy duty painkillers as alot of doctors feel they are no good for fibro (but very good for my osteo) and for my first painkilling (hopefully) injection in the afternoon. If either of the two treatments help I will report back.x
Thank you for all the above info ...still trying to accept diagnosis but relieved to know that the last twelve years of pain and exhaustion have not been in my head or being unfit as one Dr said to me whilst I was holding down a very active job caring for other people .I eventually worked part time before I retired earlier than I d have liked, buy like you understand how hard it is to work when in pain.I am just improving again after a very bad spell so onwardsvand upwards I will try and keep smiling ......take special care x
I too am in an active caring role. I went off sick in December as I could barely move. Things had eased a bit by February. I was and still am very tired and ache in places I didn't know I could. However, I am in the final year of a degree in social work which I am studying via the Open University and was offered a desk placement for 90 days in February. I went back to work for this reason but I really struggle. I am only in 4 days 9 til 5 as I get one study day and 2 days off. I am just about managing to get there in the mornings but some days I just fall out of bed and into my clothes - too much effort to shower so I get the baby wipes out and then spray myself with deo.
This ends on 21st July and I have not a clue what I will do then as there is no way I will be able to go back to hands on caring for others. Might not even get through my placement as my memory is disgusting - I walk around in a daze half the time lol
I am just taking one day at a time but it is so so tempting to stay in bed zzz zzz I am not even 50 yet so I have a while before I can think about retirement - oh the joys xx
I had and have the same symptoms as yourself, and unfortunately I don't have good news for you. I started with osteoarthritis over 20 years ago which required major thigh and hip surgery, which helped initially. However, as time as progressed I started having other issues affecting my well-being and in the last 5 years the fatigue and overwhelming pain and aches started to get the better of me. Fortunately my employer was very accommodating and as I worked with computers I was able to work from home within time slots that worked around my periods of tiredness and pain, as long as I got my work done they were okay with it. Then the Fog started and progressed up to last year making it impossible for me to recall what I was suppose to be coding, developing or deploying, even writing down a step by step list didn't help as I would either forget to look at the list, forget where I saved the lsit, and even when I followed it I would lose concentration and even find myself waking up hours later at my desk with no idea what I was doing, where I was and so on. This I found so upsetting I would fall into deep depression, as being a very highly qualified professional with people depending on my work, I felt useless and worthless both with myself and to my work colleagues. Suicideadle bouts also reared itself and as my physical and cognitive ability depreciated these became very real and I was referred to an analyst (still am). All the problems made it impossible for my employer to continue my employment and put me on to long term sick.
In answer I am afraid to say that you will learn to live with it but it is a life changing illness that has periods of regress but personally I have found these short lived and getting less frequent. As you can see I am in a period of regress at the moment as I dictate this to my voice controlled PC, but even this is tiring and has taken me a couple of hours to dictate as I have to reread and reread every time to try and recall what I was going to say, so forgive me if it sounds patchy or rabbling.
What I will say is be careful with any Private Health Insurance claims as they do not seem to understand FM, I had insurance to cover my car through illness, redundancy etc and that has been denied as they say the FM was a pre-existing illness from my osteoarthritis days (10 years of paying over £100 a month wasted), also my employer had a PHI for its employees and they have (the Insurance company) disallowed my claim though my employer is appealing this on my behalf (well it really is their claim so they can pay me part of my salary whilst off sick - which my doctor has stated is a permanent sickness term) ... I have 7 years left till retirement age (66) so it would appear the length of time they may have to pay is a deciding factor, never mind the fact I am either in bed, a wheelchair or sitting trying to keep my mind active by writing a novel (taking forever - one paragraph every couple of hours is slow going LOL).
I think the hardest thing is the lack of mental ability after being a bit of a whizz-kid computer nerd and the loss of dignity when it comes to being unable to physically do things that I used to be able to, even down to toilet needs sometimes, thank goodness I have a wife who loves me enough, thats another issue, the way you have to depend on people for some of the things we took for granted. But here I go off on tangents as ever...
I hope I haven't upset you as I know I got thoroughly depressed when told it doesn't go away and may even get worse, as it has in my case, even with all tried medications and therapies.
But take heart and learn to adapt, and always come here for advice and a shoulder to lean on .... I know finding this site has lifted my spirits.
Gosh Andy, I feel completely humbled and ridiculous for moaning. You are way worse than my wildest dreams (-:
Over the last 5 years, I have gradually had to cut down on my active life due 'mysterious pain'
I began studying for a social work degree 4 years ago - spurred by both by something I had yearned since the birth of my children and the fact that I could not continue doing 'physically' demanding work for ever.
I am now in my final year but have been hit with the 'fog' you describe. That on top of the demands of work in a practice setting - a new role for me and the awful sleeping patterns I have are very trying indeed.
My immediate supervisor in work is aware of my condition but none of my colleagues are so they haven't a clue how I feel.
Must think I am just a moaning minnie lol
I will no longer be that after reading your dilemma.
I do hope this summer sun brings you some relief in the next few weeks x
landslider don't ever worry about moaning, I have found that it actually helps in some way. I suppose it makes you realise your own fallibility health wise and in retrospect you realise that the moaning is you being angry with yourself. So never worry about it, just do it ... it helps get things off your chest. My issue was that I felt I was moaning so bottled it all up and that put even greater pressure on me and led to my deep depression. If you don't feel like moaning publicly to colleagues, moan to internally to yourself or someone that knows you well enough and knows of your illness to know that this is a pressure relief valve. I actually do all my moaning to my pet dogs, which were bought for me to help relief the depression, and it has worked. They are good listeners and never contradict me when I use the wrong word or phrase due to the Fog, and they never ever try to finish a sentence for me when I am struggling to explain something. That is my biggest pet hate, when someone, who thinks they are helping though they are not, attempts to finish off your sentence. Fortunately my family are aware that they should let me struggle to find the words or phrases as it helps me to work at battling the Fog. Though I admit when they sometimes say back what I said if I ask why they look puzzled, and hear the rubbish I may have spouted, we all laugh about it, though initially I used to worry I was going mad.
Thanks for the nice comment and I too hope the summer brings you some relief too, and if you ever want a shoulder to lean on or sound off to just drop me a comment and if I am able to respond I will.
Thank you Andy and Landslider for taking the time and effort to answer my post...... What can I say are they degrees of moaning Andy becausevi think you should be allowed the mostbmoans I'm so so sorry that you are suffering so much it must be so frustrating for you .!..landslide when I worked part I me it vwas very difficult managing financially I admit but the relief I found being able to rest and play more was worth it........ Now retired and still struggling with health and fiances I'm thinking of applying for some kind of benefit to help, I'm 66 now so not sure if I would qualify for any? Advice would be appreciated.,........ Take very special care xx
I believe you would be entitled to ESA of up to £108.15 per week. I will put a link on here. Disability Benefit is only up to age 64 but ESA does not have an age limit and includes people who are severely limited in what they can do.
You may also be entitled to discounts on Council Tax, TV Licence, Electricity, Housing Benefit etc
Thank you so much landslider for you reply and link re financial help, I will certainly give it a go and claim...I will let you know the outcome. Wishing you a smiley Thursday...... Hooray I know what day of the week it is lol... Hoping your day is a good one take special care xxx
Going mad - that is exactly how I have described myself to my supervisor in work and she scolds me for it (in a nice way)
But that is exactly what it feels like - you no longer have a brain in your head - it just doesn't want to function!
Only today in work, I was trying to write up an assessment and I had to ask my colleague several times - " what is the word I am trying to think of?" I made a joke of it and said my studying has used up all my brain power and it has gone to sleep but inside I just wanted to go off somewhere and have a good cry to make me feel better.
I totally agree about the dogs. I have adopted an old man who is almost 15 but still fit and as slow as I am at walking hee hee
I also have a young man of 2 who I bought a year past January before I was slapped down with this. He actually forces me to get out and about because I love him so much and I buzz off watching him run around. I have to take him in the car to a flatish area and then just let him run mad cos he is too much on the lead and I can't get up the hill but at least I can still get out.
Gives great cuddles too and like you said - don't answer back or expect conversation lol xx
I am so sorry to read that you are suffering and struggling so much and I genuinely and sincerely hope that you can find some resolution and relief to your pain.
I have just been revisiting this conversation as I feel so sorry for myself right now lol.
I am due to finish my work placement on the 23rd - only 11 days but I really don't feel like I have the energy to go back.
The last 3 weekends I have just slept or not been able to do my course work because I can't concentrate.
My practice assessor just thinks I am lazy and that my time management is shocking - I am too afraid to tell her the truth in case she fails me and the last 4 years have been for nothing.
If I can just pass this degree and prove to myself that I could do it - despite being a nobody with a horrendous family background, I will have achieved something even if I can't continue to work.
It is just so blummin hard - it is like my head is completely empty sometimes and I just want to cry.
11 days - surely my brain can hang on that long - I am just so exhausted I want to sleep and not wake up.
And cos I can't get a good sleep I want to cry - aaargh
I really do not know what to do any more - I feel like I am just living a big lie, making excuses and putting on a fake face for everyone else's benefit and because I don't want to be seen as a failure and quitter
Gosh I am a misery tonight - what can I do to make me feel more positive guys ;-(
I have work to hand in tomorrow and I have not even looked at it ;-(
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