No gaps between flares for months.

[deborah27]

I used to have gaps between flare ups. Not any more. For about the last 4 months I have had no respite whatsoever. The pain is constant, the fatigue and heaviness is constant, the stiffness too, the burning and prickling constant... and the rest. Every day I tell myself that it will ease tomorrow, but no. I know it will eventually, but it is so grindingly depressing and awful. Have any of you experienced a long run of things being particularly bad and then getting on top of it again?

[Carlt]

My pain and discomfort has been going on now since September whereas before I would get periods of pain and then a few weeks of relief.

It hs become so persistent that I sometimes wonder if it is fibro at all and I have some other chronic disorder that the doctor has missed.

[deborah27 in reply to Carlt]

I worry too.

[ShelWhitt in reply to Carlt]

That is exactly my thoughts. Been struggling with this over 35 years, and up until fairly recently managing to cope pretty much, and did have periods of respite. Not pain free but not so bad! but things have now gone downhill massively. Feel dreadfuly ill, all the time. Not just the pain, multitude of other symptoms as well! Over last two years lots of stress. Had three bad falls and never went to A & E. To be honest have practically lost all faith in medical profession, so just soldiered on. Did mention it to docs and she didn't seem concerned. DH diagnosed with dementia. Already has POCD Then he had a bad fall, breaking his foot and out of action for most of last year. Never stopped with appointments etc. plus my thyroid went out of sinc and blood tests every 6 weeks for that. Totally drained and stressed out . Unfortunately have no support. All usual fibro symptoms, and the rest, plus severe anxiety and also having ecg tests for heart/panic attacks. Not sleeping. Had a streaming cold for three weeks. Now this. Honestly do not know how I will get through it, but we don't have a choice. No longer any contact with GP as no point. Sorry to be a moan, but that is how I feel at the moment. I have realised there was no help for us before this so there definitely won't get any now! Take care and try to stay safe. xx

[Carlt]

I have spent my life avoiding stress (a colleague once said that if I were any more laid back I'd be in a coma) and eating well.

I have tried to find the traumatic event in my past that some folk believe can trigger fibro but my sloth-like meander through life doesn't seem to have anything of note.

My gp and the various consultants I've been referred to have said that there is no point sending me to a pain clinic because my stoicism is exactly what they try to teach anyway.

The drugs don't work, cbt and such pain management therapies won't work because I already practise them and my conviction that if alternative medicine worked it would be called "medicine" precludes me from "faith" healing so the trauma in my life is the pain and it isn't going to go away.

However I am, after a lifetime of mucking about with textiles, finally teaching myself to spin yarn, because it requires less movement than knitting, weaving and sewing causing less pain...

... so every cloud...

On the other hand my lovely OH pointed out that my workshop and the house are already full of yarns that I can't use so should I really be starting a hobby that will inevitably lead to more... I wish I had my headphones to drown out her logic.

[YASMINTINA FMA UK Volunteer]

Yes once before, rest up ,eat/drink to keep your strength going, ride it out and hopefully start to do one or two tasks at home, something you en joy not always chores, I listened too music more, some good films, and phone your friends/or loved ones and get them to stay in touch, if you can lay/sit outside for alittle while on a warm day I used to find that helped me, hope the flare hogs off soon xx

[Suehad]

Hi, like yourself I used to ha e flare ups but from June 2019 it had been one long battle right up to march this year. I went to a chiropractor and he turned my life around. He worked on my central sensitization with a laser. He said he believes a lot of my problems stem from a bad gut. Had me changing my diet & I cannot believe how much better I now feel. The enforced rest with Covid 19 has also helped. I have now rediscovered my garden...got seeds & plants on go in my little green house....sat out enjoying sun in my garden....live feels pretty good at the moment. Don't get me wrong I am not fully pain free but it is a more manageable kind of pain. Learning to relax with breathing excersises and meditating work for me too. Hope you turn the corner soon xxx

[Penpusher]

Hi Deborah, I'm so sorry to hear how bad it's been for you. Doctors used to ask me if my symptoms would alleviate or change over the seasons and I honestly thought that there were no seasonal differences.

Well, like you, since last September my symptoms have been persistent, unending and truly unbearable. I have fibromyalgia, arthritis, insulin-dependent type 2 diabetes, psoriasis (an autoimmune disease), high blood pressure and a number of other conditions.

I'm 50 but feel 80+. If not for my son who's in his early 20s who has Aspergers, I honestly would have committed suicide due to the pain. The idea of continuing like this until I retire (I work full time) is untenable.

So thankfully, in the last few days I've actually felt better. The week before the virus hit our consciousness, I saw my GP who agreed to refer me to a pain clinic. I'm going to take this forward when I can as I'm a little bit stubborn so can't let my CBS (self-termed Crap Body Syndrome) get the better of me.

My work/life balance is pretty negligible as I'm exhausted once I get home from work so I'm either at work, in the supermarket or in bed.

So my message is this: you are not alone. This is our normal and although some things will help alleviate some symptoms, in reality we've got this now for the rest of our days.

Do what you can. Take your pleasures where you can. Enjoy your life in whatever way you can and ignore those who seek to bring you down.

Life will have good and bad days but thank god for the myriad of painkillers available to us.

Keep talking to those of us who understand. We all need to vent occasionally and this forum is where you need to be.

Good luck with everything you do, my thoughts are with you x

[deborah27 in reply to Penpusher]

Thankyou so much.

[ShelWhitt in reply to Penpusher]

What a lovely letter penpusher. I hope you don't mind me gatecrashing. I entirely agree and it is great to hear from someone who truly understands. I think the problem is unless you actually suffer with this you don't have a hope of grasping just how debilitating, painful and demoralising it is ! Take care and stay safe. xx

[Penpusher in reply to ShelWhitt]

You too xxx

[Julesubu]

I have been bad since had several steroid jabs for my arthritis last year. I'm working at home for isolation and thought this would help but can barely move every morning. Was just starting to feel better after christmas but had a nasty fall after new year in garden. Think this has just ramped everything up , cracked my elbow and still hurts. Just try and stay positive even though hard at the moment. It will improve but we are all different so hard to know when. X

[deborah27 in reply to Julesubu]

I'm so much worse since working from home. Miserable.

[ange1974]

Hi mine is cronic it has been everyday for 3 years since I got diagnose d by the rheumatoligist ,,having pernious anemia dosent help the problem,are you on anything to ease your pain,maybe book an.appointment to speak to your doctor abt the change ,take care x

[deborah27 in reply to ange1974]

Thankyou, sorry about your suffering too. I have rubbish gps, I dont take any meds.

[Hidden]

Yeah I have been the same, I had a decent gap between flares but the past 2 months I have had three separate flares with merely two days “respite” in between. Same as you the pain fatigue & heaviness like you have lead on your body is just horrendous. How are things for you now? I have really been trying to push through the flare by not increasing my medication but it was tough

[deborah27 in reply to Hidden]

I'm still the same, as you say pushing on with it. I just get so fed up.

[Nanie75]

Deborah27 perhaps some meds- ( I only take paracetamol ) would help take that edge of fedupness off? Sounds like you’ve tried to go it alone and it’s worn you out? Just a little relief from all the schedule and pains will give you a breather to get on top

Of it? You have every right to change your GP - just tell them and go to someone you feel comfortable with (over the phone till the lockdown is finished)

Take care - get help- there are no prizes for going it alone.

Wishing you well.

[deborah27 in reply to Nanie75]

Thankyou so much for your reply, I dont usually take anything more than a lemsip, and that's only if I'm so unwell. Lol. Those medals definitely lost in the post.