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What should I expect

Jul 30, 2017 1:17 PM

Hi, I got diagnosed with fibromyalgia 3 years ago but suffered the symptoms for 8 years, it's gradually got worse and I'm now suffering my worst ever flare up, and I'm on week 8 of this flare up. Usually my flares only last around 5-7 days. This time I've ended up in hospital they wanted me to stay in as the muscles down my right side from neck to lower back had gone into complete spasm. I couldn't get myself in and out of the bath, or walk up and down steps, I've had to stay at my mums house for the whole 8 weeks and I'm still just as bad. Has anyone else suffered a severe flare, and if so how long did it last? And have you suffered more regular flares after a severe one? I know everyone is different but it's the not knowing what to expect that is driving me insane. I'm only 24 and have a 5 year old, who as had to help undress me and brush my hair at times! I'd like to know what to expect for my future as well as my little girls.

Jul 30, 2017 8:55 PM

I'm in my third year post-fibro-diagnosis. I've experienced symptoms as severe as you describe. I hesitate to tell you how long my worst flares have lasted as it may be discouraging. Rather, I recommend you spend some time online researching "fibromyalgia success" and other such topics. When I started putting the lifestyle recommendations into practice, my flares dropped dramatically in intensity, duration and frequency.

The good news with fibro is that you actually have a considerable amount of control over your symptoms and their severity. The three things to focus on are sleep, exercise and food. Here's what's worked for me:

Sleep: I had to take sleeping pills for a while as well as narcotic pain killers to allow me to sleep. I don't hesitate to take meds for sleep. Good sleep is vital to feeling good.

Exercise: This one is the hardest for me because I never can tell if I'm overdoing. That being said, you have to move to keep your muscles limber and free from cramping. I started with five minutes of stretching and worked very slowly up from that.

Food: the number one thing I've done to feel better is to change my diet. Look up foods that cause inflammation and stop eating them. Sugar and milk are especially key yo remove from your diet. It makes a HUGE difference! I know how difficult it is, but it's totally worth changing your eating habits. I went from a traditional western diet full of processed foods and sugar to a whole food plant based vegan diet.

Combine all of those lifestyle changes with finding the right doctor, medicines and supplements and you'll do better.

Now when I have a flare it only lasts a day or two. None of this months and months of nonstop pain nonsense. However, it has been a slow process of healing over the course of a couple of years. Progress comes slowly and you have to be careful not to overdo when you have good days. You've pushed yourself well beyond your limits and flares are our fibro body's way of telling us to sit down and listen. So start listening to your body. Take note of the foods that hurt or help and make the changes your body demands. Until then, you will remain a hostage to your fibro.

Jul 30, 2017 11:52 PM

@ jodiec93. I am sorry to hear about your flare ups and happy your mom is able to help you out.
I am sorry I don't have this problem but I'm hear to listen and try to help. Your kids will be okay . Helping there mommy out will help them to be a caring person as they get older .

Very ((Gentle hugs)) Stay strong . Sending prayers your way and your family way 🤗🤗

Stay strong . Never give up . 💕💕💕💕

Jul 31, 2017 12:21 AM

I have four children. My chronic pain has taught them acceptance, compassion, service, love and selflessness in such a deep and meaningful way. They are mature and compassionate far beyond their years. They are better people for having a mom who needs help from time to time (sometimes I need help all day, with everything). I would give up my pain in a heartbeat- but not if it took the lessons from them. If my pain is the only way they could have evolved into the extraordinary people they are, I'd sign up for this pain in a heartbeat.

Jul 31, 2017 12:38 AM

@ FatiguedFighter. Awe 🤗🤗 That is so sweet . You are truly amazing. ((Gentle hugs)) My friend. 💕💕💕💕

Jul 31, 2017 3:16 AM

Thank you @Westrengirl 😘 @Fatiguedfighter I completely relate, my little one is very caring and compassionate and very grown up for her age when I'm not well. The only thing is, i don't want 'looking after mummy' being her main childhood memory when she grows up. Her nana and auntie take her for the night sometimes and do the fun things with her that I can't do, but she never wants to leave me when I'm poorly, at five she already worries and asks who will look after me if she goes.

I've changed so much of my diet already, but exercise is just impossible at the minute. My physiotherapist discharged me as when trying the small exercises she could feel my muscles going into spasm so said physio was the wrong treatment, I am going back on the 7th August for a second opinion and hopefully to try the hydrotherapy pool. As for sleeping, I will try anything to make me feel better so don't hesitate to take sleeping pills, but even with a strong dose of mirtazapine the pain is still waking me up during this flare up. I've gotten to the point of been so exhausted I've wet the bed a couple of times and not woke, but as soon as that burning pain strikes when I move I wake up! I'm back to the doctors today AGAIN hopefully they will listen to the words coming out of my mouth and try something new or get me some extra support rather than just telling me there is nothing more they can do. Has anyone ever tried any sort of pain injections for fibromyalgia maybe?xx

Jul 31, 2017 5:52 AM

Hi 👋🏼 I have very severe fibro all the time so I get very bad flairs, It isn't unusuall for people to get them as bad as you just have but it doesn't mean you will always get them this bad. I will be thinking of you and I hope this flair passes soon 😊

Jul 31, 2017 8:30 AM

I tried trigger point injections in my shoulders. They helped some but didn't last very long.

Jul 31, 2017 11:09 AM

Thank you littlelola I hope it passes soon too, I just miss been me!! What are trigger point injections @Frustrated ? Is it same as accupuncture?

Jul 31, 2017 11:42 AM

No I think it's like steroid/cortisone shots. Don't quote me on that but it has some kind of medicine in it that they inject into your knots from fibromyalgia. It would be worth a call to your doctor.

Jul 31, 2017 12:24 PM

@frustrated I've cried and begged for those injections because other people have told me about them too, but they say they can't do it because there's too many trigger points and they refuse to refer me back to the specialist!! Been referred to pain team after 3 years of being diagnosed though so I'll wait and ask them about them, my gp surgery is clearly rubbish. Do you mind me asking where you are from? Like do you live in uk because a lot of stuff I ask for they say it's just in America. But I know a few people who have those injections just not for fibro x

Jul 31, 2017 4:46 PM

I do live in the US. In
South Dakota. My GP gave them to me.

Jul 31, 2017 5:20 PM

Jodiec93 I've been meaning to write this since you posted but I start get distracted then what I write disappears (you'll find this app is very good at that!!)

Well anyway there are a couple of things that might possibly benefit you but they take time to get into your body (please ignore if you already do them).....

Take a magnesium supplement, it helps relax muscles, aid nerve function and helps reduce fatigue. My personal experience with magnesium supplements are that they have helped to reduce a lot of my muscle twitches, it hasn't got rid of them completely but it has reduced the severity of them.

I've also recently started taking Turmeric capsules, I've found that it has started to help me with some of the inflammation in my body.

I know you said that you can't get in or out of the bath but when you are able once this flare has lessened try Epsom bath salts, run a bath as warm as you like and put in a couple of handfuls or even a couple of cupfuls of Epsom bath salts in it and soak in the bath for at least 20 minutes as the Epsom salts is extremely good for relaxing your muscles and it's good for your skin as well....that's a brilliant bonus for me as my skin is sensitive. If you feel you need a little extra help relaxing in the bath then add a few drops of lavender essential oil in the bath as well.

Have you tried any creams or gels that you run in over the area of pain? I've recently found devils claw gel and it has worked really well for a lot of my pain in my lower back and upper back, neck and shoulders. I don't put it on every day as it seems to make my skin more sensitive than normal so I only use it when I can't cope with my pain.

All these I've got from my local Holland and Barrett so if you have one nearby then it may be worth a look.

I know a few people who have had injections for their pain and some worked and some haven't it all depends on how the person processes it.

You PG surgery don't sound great but is it the same in all your local surgeries or are there so.e goods ones that you could transfer to?

I'm sending you positive vibes and warm healing hugs xx

Jul 31, 2017 7:13 PM

Thank you @sezzy I've not tried the magnesium or the turmeric so will give them both a shot! My GP surgery was actually rated one of the best in the city I live in, it's just unfortunate that they have started having a lot of locum doctors in now so majority of the time I see a person who doesn't know me or my personal story! Are you from the uk? I really am intrigued about the injections it seems to be the only medicated thing I haven't tried, and I really feel it would be st least worth trying but no matter how many times I beg they just refuse!xx

Aug 02, 2017 6:29 AM

Yes I'm in the UK, my GP surgery has had a lot of locums lately as well because they are just so busy some of the doctors have left due to all the pressure they seem to be under although the Dr I see is very good and one of the partners (thank heavens) but she only works Wednesday to Friday and if I need to speak to her urgently then I have to have a phone appointment as to book face to face is a 6 week wait!

Have you got a rheumatologist? Could you not ask them or ask to be referred to them as I do know someone who had their injections thro them (it didn't work for that person but at least they were able to try them), I haven't yet asked or been advised about the injections so I don't know where the land lays for me yet.

With the magnesium supplement I take the one which says 250mg once a day but I take it twice a day (most research I've done says fibro sufferers should take around 500mg a day)

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