Chronic pain
Can we have a chat about fibromyalgia?
mineofuselessinformation · 01/10/2021 18:12
If you bear to read my essay, I'd really appreciate it....
I've only just been diagnosed, and I'm currently off work as I couldn't cope with the pain and exhaustion I'm feeling. (Hindsight is a wonderful thing as I know now I shouldn't have tried to keep going as long as I did.)
I'm very frightened to be honest, especially as I don't even know if this is a flare or how things are going to be. (My sick note says possible flare).
My current problems are pain, muscles spasms, stiffness, poor sleep and concentration, and exhaustion. (I also have hyper mobility and arthritis - I suspect that's why I've never been diagnosed until now.)
I'm overwhelmed by it all.
I'm also the kind of person who likes to keep busy, so even though I've been pacing myself for years, it's difficult for me to just sit and ignore all of the things I have no energy to do at the moment.
I'd really appreciate hearing how a flare feels for you, and how you deal with day to day life, and especially if you work full time - how on earth do you manage it?
Thanks for reading.
mineofuselessinformation · 01/10/2021 20:48
Hi, thanks for the reply - I've only known for just over a week, so it's very new. It was totally unexpected and I honestly thought it was going to be something like joint hyper mobility syndrome.
Work know, and are being somewhat supportive, but people keep copying me in on emails about covering my absence, so that's adding to how stressed and anxious I feel.
picklemewalnuts · 02/10/2021 07:25
I'm two or three years down the line, it's feels rubbish doesn't it? There are several things that have made a big difference to me. Lifestyle changes are the key, don't start on ever increasing doses of pain medication.
Pacing- that isn't scheduling rests or having a quiet day after you've overdone it, it's never overdoing it in the first place. So don't do a shopping marathon in the city centre, go to a couple of shops then come home.
Coddle yourself- treat yourself like a newborn baby. Regular rests and food throughout the day, routines, avoid overstimulation.
Amitriptyline- persevere. I take 30mg. It helps sleep and reduces the jangly nerve feeling. Hugely helpful.
Epsom salt baths.
Massage
I did a graded exercise program which was amazing for me. It started really small, stepping up and down ten times, moving a jar from one side of the table to another, reaching above my head etc. I'll expand on this separately if you like. Point was to start at a level just below what you can manage and do it consistently for two weeks, good days and bad days. Then increase a tiny amount- 10%. Then again. I'm up to managing a 5 mile walk now.
Tai Chi is excellent- try and join an online class, do it every day if you are able. I started doing seated tai chi and am now able to stand throughout and fully engage.
You can and will get better, but you must work at looking after yourself.
mineofuselessinformation · 02/10/2021 08:21
@Hallelujah2020, it was the GP who diagnosed me. I'm signed off until tomorrow but I'm going to ask for another two weeks - do you think that's enough?
I can't turn the work email off - I'd have to uninstall the details from my phone and iPad and I don't want to do that.
@picklemewalnuts, I'm in 20mg amytriptyline and 3 x 10mg baclofen. (I need to discuss this though, as I'm still getting very bad muscle spasms, and although my sleep is better it's still not great.)
Hallelujah2020 · 02/10/2021 08:45
I’m four years in from being diagnosed by rheumatologist, I’ve also got arthritis in my lower spine and right knee. And currently also have anaemia and possibly hypothyroid also 🤦♀️🤦♀️
I can’t say the last four years have been easy. When diagnosed I was working 44.5hrs a week plus on call (vet nurse) and rheumatologist insisted I reduce hours, so through a flexible working request and occupational health assessment I reduced to 33.5hrs a week and stopped all on call
Recently I’ve had another occupational health assessment as I felt and GP did that it would beneficial to reduce hours further so just been agreed on a new FWR that I do 29.5hrs. I now do a long & short day, have a half and full day off and then do a long day and very short day
I have reduced the physical aspects of job by doing more of admin side and having good colleagues who will help if I need them too
I suffer a lot of neurological and neuropathic pain so pins and needles, electric shock sensations, crushing sensations etc
I’m on quite a lot of Gabapentin plus Codrydramol and Naproxen but have to only take that when I really need it as stomach doesn’t like it
dementedma · 02/10/2021 08:49
Take magnesium supplement.
Sleep, sleep, sleep when you need to( if not at work etc). Learn to accept that day time naps are going to be part of your life when you have an energy crash.
Very gentle exercise, simple stretches etc are important and will help.
Hallelujah2020 · 02/10/2021 08:49
Definitely pacing yourself really helps but don’t shut yourself away. The last few years I’ve really discovered how much being out in nature helps and also being with good friends
Sleep is definitely an issue, I try and stick to the same bed time and wake up time and having a weighted blanket seems to help also
Hot baths
Acupuncture
Massage
Epsom salts
All things that definitely have helped me
And to be honest a good cry sometimes
picklemewalnuts · 02/10/2021 09:42
It isn't a quick fix, 'find the right supplement have a week off then go back to normal' situation. You need to make changes and sustain those changes.
So a regime of supplements, gentle exercise, good quality food etc. Manageable work load and so on.
It's taken me three years to claw my way back to a reasonable day to day routine. I work 3 days a week, walk my dog and do occasional evenings. I don't do noisy, busy places where you get wound up and excitable.
But we each have to find the things that help us. Try not to get stuck on your sofa 'cos it's flipping hard to get off again!
My mobility has improved enormously from what it was- I used to dread the stairs at bedtime. Now I run up and down them regularly just to make sure I still can!
Mumteedum · 02/10/2021 09:50
@Hallelujah2020
I can’t say the last four years have been easy. When diagnosed I was working 44.5hrs a week plus on call (vet nurse) and rheumatologist insisted I reduce hours, so through a flexible working request and occupational health assessment I reduced to 33.5hrs a week and stopped all on call
Recently I’ve had another occupational health assessment as I felt and GP did that it would beneficial to reduce hours further so just been agreed on a new FWR that I do 29.5hrs. I now do a long & short day, have a half and full day off and then do a long day and very short day
I have reduced the physical aspects of job by doing more of admin side and having good colleagues who will help if I need them too
I suffer a lot of neurological and neuropathic pain so pins and needles, electric shock sensations, crushing sensations etc
I’m on quite a lot of Gabapentin plus Codrydramol and Naproxen but have to only take that when I really need it as stomach doesn’t like it
My doctor thinks I have chronic fatigue syndrome but is referring to rheumatology because she isn't sure between this and fibromyalgia. They seem to lump it together a bit. What I'm struggling to get my head around is what the hell I do financially if I have to reduce my hours? Can occ health tell you that's what's got to happen and then you just have to swallow the financial hit?
I'm scared to death about getting worse and losing my house and not being able to support my son.
mineofuselessinformation · 02/10/2021 09:58
@Mumteedum, those are exactly my worries. I currently work full-time in a stressful job (teacher). The financial hit if I need to reduce hours will be significant.
Thanks all for the replies. I've started taking supplements including magnesium and have some Epsom salts coming today.
I'm still pottering a bit, but the exhaustion strikes several times a day at the moment.
and 💪Buttercup72 · 02/10/2021 10:20
Fibro and CFS have both been linked with gut health. Bacteria in the body perform lots of essential processes and if they get out of balance it can cause all sorts of health issues - IBS, anxiety/depression, weight gain, chronic pain , fatigue, brain fog, restless legs, skin issues etc.
Oil of oregano softgels (with a high carvicol %) can kill off the bad bacteria - and probiotics/ fermented foods eg. Kefir can repopulate with the right bacteria. I had fibro for 7 years - absolute hell, but after treatment I am back to full health.
mineofuselessinformation · 02/10/2021 19:27
Again, thank you.
I've been needing a sleep after work for about the last three years (tiredness to the point of feeling ill with it), so the idea of a nap isn't strange to me - but I need them much more often at the moment!
I will be asking to see an occupational therapist. If I can't see one through the NHS, they are available through work (I'm a bit wary of that, though, as their agenda may be different to mine). @Hallelujah2020,
I'm aware they can't force anything, but as far as work is concerned, I'm not sure what adjustments they could make - it's been my experience when returning to work after major surgery, that they would not accommodate reduced hours. (This was a different school, but in teaching you're either there doing 100%, or not. Part time hours just don't work for getting supply, so the work falls to other colleagues covering your lessons, which doesn't go down well. I'm not matyring (is that a word?) my profession, but we're all pushed to our limits as it is.
I'm keeping moving when I can, as besides anything else, adult dd2 can't help with certain things.
picklemewalnuts · 02/10/2021 19:47
Is it primary?
There's job share, or cover for professional time (can't remember what that was called- Fibro fog strikes again). Does your school ever split the classes down smaller for literacy/numeracy? We had a part time teacher who covered those classes.
Try discussing with your union. They may have some ideas.
mineofuselessinformation · 02/10/2021 20:31
@picklemewalnuts, I'm secondary. My department is slightly under-staffed so a colleague (who is trained in my subject, but teaching his own mostly) is picking up the slack from that. In that respect, a job-share type arrangement wouldn't work. (The colleague who is picking up the little bit is a friend of mine and I don't want to kick him in the teeth as he has had his own issues recently.)
I also have a TLR. I know from other colleagues that going below 80% would meant that they lose it, so it's a double whammy.
The unfortunate thing is that I have colleagues who do around 60%, but they have been there longer than me, so they will get priority over me every time. It's just how it works in my school, and I can't contemplate the idea of leaving and moving elsewhere, as the hit would already mean I would need to move to somewhere cheaper. I can't deal with both of those at once.
Sorry, I know I've been a 'negative Nelly' to coin a phrase, but that how it is... 
mineofuselessinformation · 02/10/2021 20:34
@picklemewalnuts, and yes, I totally understand the fibrofog. That's a major part of why I'm not ready to return to work yet. I teach A level in my subject, and I've barely been keeping my head above water (although I'd usually be 'on it'), so I know I haven't been doing the right thing for my students.
nicky2512 · 02/10/2021 20:40
I’m about ten years down the line. I’m coping but only just. I’m so sore and tired at the minute but my hardest symptom to stick is constant deep tingling in my hands and feet. It’s so sore. Also “sparks” and electric type pains. I take pregabalin and naproxen.
I actually feel like I could happily cut my feet off at the minute.
Only advice really is to do what you need to - don’t try to struggle on. When you need to rest you really need to.
Easier said than done sometimes though.
mineofuselessinformation · 02/10/2021 20:58
My sympathies, @nicky2512.
I'm only at the beginning of knowing about it, but I think I've had it for years.
I can't take naproxen (I've tried it before for what was then called arthritic pain). I'm still fishing around for the medication that suits me, but also know I might need to give it time for my current medication to take effect fully.
mineofuselessinformation · 02/10/2021 22:05
@nicky2512, I know it can be challenging (I'm struggling to even get an appointment with my GP for a review), but do try when you feel ready to speak to your GP or rheumatologist about how you are feeling.
It can be difficult and you need to be persistent.
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