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(20 Posts)
Shelbel Sat 02-Oct-21 21:17:07

Anyone have this? I'm going through a really bad flare up of it right now and tbh it's getting me down.

I keep trying to look for other conditions it might be - a misdiagnosis maybe, preferably one where there's a cure or treatment. Sadly, I haven't found it and I'm still trying to accept having this condition. Do others with it feel this way too?

lemongrove Sat 02-Oct-21 22:07:08

Both DD’s have this condition Shelbel they have had to accept it and alter their lives accordingly around it.Nothing really helps, but in a bad flare up you have to just rest as much as you can.They don’t drink any alcohol ( a good idea for most of us!) or caffeine and if they push themselves too hard with what they do, then they really suffer.
Hope you feel a little better soon, it’s a rotten thing to have.

nadateturbe Sat 02-Oct-21 22:41:50

I have it although I am not too bad. My sister is on lots of painkillers and in constant severe pain.
This is how I cope.
I take as few painkillers as possible hoping that when I am in severe pain they will work better as my body isn't used to them.
I drink little alcohol and have cut sugar because I am prediabetic. I think less sugar has helped. I use piroxicam gel, pernaton and voltarol. ( not all at once)
I limit doing jobs that use my muscles - OH hangs washing, vacuums stairs etc. Although to cut them out completely would weaken muscles I believe. And I try to pace myself. And get plenty of rest. Stress exacerbates it too.

nadateturbe Sat 02-Oct-21 22:44:32

And when you have a flareup just be patient and wait for it to pass. Not easy I know, especially when people don't understand. flowers

MayBee70 Sat 02-Oct-21 22:54:49

I wonder if turmeric in the form of golden paste would help? I’m a great believer in the benefits of taking turmeric.

EilaRose Sun 03-Oct-21 01:51:08

I've had a run of what I have called 'rolling mini flareups' this year, but they have been caused by needing surgery (separate problem) and it being constantly changed, dates/times/surgeon/procedure/etc/etc and the stress has been unbelievable and I know pre-Fibro none of this would have bothered me too much other than be a pita. As we all know, stress is not our friend at the best of times but this year these episodes have hit one after the other with no in-between times to recharge, before the next one strikes.

I mentioned to the most recent surgeon and admin lady about Fibro hoping they might be a little empathetic, but that quickly backfired and the admin lady was just plain horrible and I think delighted in her new-found control. So I won't try that again and in fact will seek out another surgeon in the future. Hospital staff were the eye-rolling type, although the anaesthetist and scrub nurse were understanding, so at least I had a small win. Now I'm working of getting back to 'my' normal.

Shelbel I was feeling a bit like you these last few months so truly understand, do you think this whole Covid thing is behind it? Here we've been in lockdown since June and I'm not a social butterfly, but the last couple of weeks have been a bit much, and I put it down to starting to put the whole surgery debacle behind me.

Keep in touch here because at least we understand what you have to live with, whereas other people...well, they just roll their eyes and think 'they' are having a bad day. Huh!!!


freedomfromthepast Sun 03-Oct-21 01:54:10

I do. I am in a flare right now as well. It is change of seasons, so not surprised. I am always worse in the winter.

Baggs Sun 03-Oct-21 07:23:38

I find that a glass of wine can help with the pain. And I do mean one glass.

I take painkillers daily and my mottos are keep moving and take one day at a time. Probably no help to anyone else but it helps me.

Best wishes to all fellow sufferers.

nadateturbe Sun 03-Oct-21 07:48:33

Shelbel I just realised I didnt answer your question. Yes, I find it difficult to accept because there isn't actually a definite diagnostic test for fibro, and knowing there is no cure is very difficult.
It can be depressing and takes a lot of time to get your head round the changes that you have to accept in your everyday life. Especially as there is often little understanding of the illness, even with medical staff as Eilarose has said, which is disgusting.
I sometimes feel so frustrated. So yes it gets me down sometimes. But I just do my best to enjoy life during the good times.
Feel free to have a moan here.

Baggs keep moving is good advice, and I too have a small glass of red most days. Although I know some folk find they can't tolerate alcohol.

cornergran Sun 03-Oct-21 08:05:55

I’ve lived with fibro for about 30 years. My approach is similar to baggs. Regular painkillers, nothing too heavy though, one glass of wine does me no noticeable harm. I’ve learned to listen to my body, keep as active as I can, adapt how I do things so I still do them. Make sure I include things I enjoy before I run out of steam. I’ve also found homeopathy invaluable. Flare ups are debilitating shelbel and yes, they do get me down at times. I’m in the throes of a post surgery flare up just now. Perhaps I was lucky, the medical staff involved in the surgery all understood and were helpful. I’ve an excellent physio who also understands. It will pass shelbel. Fibro is so individual, what helps one person wont help another, please don’t assume you’re doing anything wrong. Come and talk to us whenever it helps, there are many here who will understand.

Shelbel Sun 03-Oct-21 11:09:05

Thank you all for the replies and support.

Cornergran 'it will pass'. Thanks for that it's simple but so true. It will, I just have to get there.

Lemongrove - sorry to hear that both your daughters have it. It certainly is a horrible thing to have, and so frustrating.
Eilarose - I'm sorry to hear you have been treated that way by hospital staff. There's still a lot of prejudice against the condition. I dont think Covid has had an impact on my condition. I wasn't worried about it and I'm not in contact with any high risk people. DH is working from home.

I think really that I'm having a big problem accepting it. I keep as active as I can. I pace myself and use some painkillers and gentle stretching exercises. Despite this I'm finding it hard to cope with the loss of being able to do all the things I used to. Must add that I also have arthritis which is quite bad in my hands and I can no longer do some crafts or anything requiring fine work or strength. Along with shoulder bursitis and tendonitis I'm a mess confused

Sorry for moaning. I really need to work on acceptance.

NanTheWiser Sun 03-Oct-21 13:24:37

I think the change in seasons can have an effect on our bodies too. I don’t have Fibro as far as I know, but the last two or three days I’ve had a lot of pain and discomfort - aching legs, hips and feet etc., which may well have been due to the drop in barometric pressure. Apparently this can cause all sorts of problems in your body, so I’m blaming that!

Shelbel Sun 03-Oct-21 17:29:50

Nanthewiser - I think you're right. I'm a lot worse now the weather's changed.

nadateturbe Sun 03-Oct-21 18:28:58

Some soluble painkillers have aspartame. Better to avoid those. Aspartame is believed to exacerbate pains.

Santana Sun 03-Oct-21 18:41:53

Hi Shelbel, have a look on fibromyalgia UK website. I get newsletters on my Facebook or u can get a hard copy I believe.
I have had it for 20 years, and it has been a constant battle to be taken seriously. Easier now that I am retired as can rest if I need to. There are so many symptoms, and people suffer differently and find their own remedies.

Shelbel Wed 06-Oct-21 13:19:43

Thank you Santana, I'll have a look.

VioletSky Wed 06-Oct-21 13:30:18

I have it too and when I became ill with Graves disease on top I could barely move.

In general I think I'm higher functioning than some. During the day I'm OK, it is at night when it stops me sleeping I don't cope. Especially when restless legs kick in as well.

Things that help me are yoga, vitamin D and my electric blanket which has been a game changer.

Sorry you have to sniffer this too, they are researching it a lot more now so I feel hopeful. Wouldn't surprise me if it is an autoimmune condition of some sort.

Theone Wed 06-Oct-21 15:54:00

It runs alongside my RA and I too think the two conditions may well be linked. I'm sorry for all those suffering. I have become something of a minimalist and live a life of simplicity without ever intending to! Pacing myself and planning my days carefully does help a lot though smile

Barmeyoldbat Wed 06-Oct-21 16:24:36

I have it as well and I am like violet sky, I can manage during the day and take no painkillers but night time is a different story and on a few nights of the week I take 5mg of liquid morphine and that really helps. The pain at night will depend on what I have been doing during the day and if I managed to get some rest. I still cycle, no pain when I am doing it, but it’s tgetwo or three nights after that I take the morphine. I also take vit D and C. Also I have started to have any injections into other sites as it hurts like hell in my arm. It is hard to accept, I am still not accepting it fully and keep looking for other reasons. Please let us know how you get on.

Shelbel Wed 06-Oct-21 16:59:33

I take vit D, B12 and magnesium. Not sure if it's helping. 8m thinking if asking doc about duloxetine low dosage. On the fibro UK fb group people are having a lot of success with it.