How do you manage your Fibromyalgia?

[ExploringPanda]

Hello everyone,

I have recently been diagnosed with Fibromyalgia and I am trying to work out what I can do in terms of treatment and self-help to reduce my symptoms and manage them. I was wondering what everyone else does?

Thank you

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

It can be trial and error finding what works for you personally - what I find helps is medication, cbd, pacing, exercise /activity, mindfulness, meditation, distraction, holistic therapies, weighted blankets, heat etc

[ExploringPanda in reply to Hazel_Angelstar]

Thank you for your reply! I've been looking at all of the information given to me and that I've found on websites like FMA but it's difficult to work out what to do. Like for example, how do I manage and reduce the headaches and fatigue.

I've also read mixed views (from the NICE website) on things like painkillers and cbd so it's difficult to know what to try.

Is pacing something you have to do forever? Does it get better over time?

I've been going on walks but I don't know whether to add exercise in if that will help when my pain gets worse. I've also been told stretching is good but I'm not sure what stretches to do.

How often do you use meditation?

By holistic therapies do you mean acupuncture?

I didn't know weighted blankets could help with fibro!

I've been using hot water bottles and heat pads a lot since finding out and they've been really helpful. Do you use reusable ones for when you're out and about? My most severe pain is in my neck and shoulders so I'm not sure if one would work for that due to size and length.

Sorry for all of the questions!

[JayCeon in reply to ExploringPanda]

Hi ExploringPanda, "gathering up the pieces" as I often like to do, I just found these questions of yours Hazel_Angelstar hadn't got round to answering. I'll be glad to jump in if that's OK.

but it's difficult to work out what to do. Like for example, how do I manage and reduce the headaches and fatigue.

Generally you 2 weeks later may have already realized a lot of it is trial and error, focusing on and looking up all recommendations for each symptom singly. You've given two examples. It may help to make a list of all or your most annoying symptoms and decide upon those you want to focus first, start on some of the basic strategies, then rotate to other symptoms, spiralling deeper every time. Basic strategies for headache are to make sure drink, food, air, breaks, stress, screen time, any other triggers etc. are identified and under control. Basic strategies for fatigue are learning to pace, finding your limits, learning new ways of doing things, switching tasks. Then deepening for each symptom we can learn A. mental strategies, B. physical treatments (expert or self), C. try diets, D. adapt (to) our environmental problems like weather, E. meds & supps. For each there of these there are 20+ possibilities, so lots to try.

I've also read mixed views (from the NICE website) on things like painkillers and cbd so it's difficult to know what to try.

Yes. Yes. What works a bit for one may just harm another. I don't take meds or CBD, everything harmed me, whilst I'm now spiralling deeper and deeper into the supp route, after my first trials with them didn't help.

Is pacing something you have to do forever? Does it get better over time?

Forever. It gets better the better you learn to do it by listening to your body.

I've been going on walks but I don't know whether to add exercise in if that will help when my pain gets worse. I've also been told stretching is good but I'm not sure what stretches to do.

Exercise, stretching and for me acupressure is something most relevant to local pains, not the overall Ache. Which ones to do is praps easiest to look for the symptom/area plus one of these 3 or similar things on youtube and go thru the probably 8-10 videos we usually find. That's what I now do, after mainly one acupressurist helped me get the pains down. Plus back is often a problem, so just learning a whole set of exercises/yoga for the lower, middle and upper back is a good toolbox to test in time for when something starts up or to prevent it. But it's praps more effective to concentrate on the pains we already have. Exercises, stretches and acupressure will not help the Ache from overdoing it, for that you again need to pace and just rest till it's over. Really over. Even if that's a few hours or the whole day. It's good to find some very gentle stretches or praps breathing exercises to keep you moving during this rest, but nothing that increases the Ache.

How often do you use meditation?

Most that do it do 20-30'/d. Many don't feel that well doing it, but relaxation exercises like progressive muscle relaxation, autogenics, self-hypnotism, Yoga Nidra, breathing exercises, mindfulness that are actually forms of meditation, without concentrating on certain thoughts, just the body itself and certain images. I tend to do these when I need them, when my body is tense or I can't sleep. My favourite for anxiety is mindfulness, for lack of oxygen is breathing exercises, for sleep is Yoga Nidra.

By holistic therapies do you mean acupuncture?

Well some consider everything except meds to be holistic. Others consider a lot of this to be "common sense". In all the 5 treatment areas I mentioned above there are things considered more holistic and less holistic, and the definitions vary. In the physical therapy area, typical PT may be more "common sense", whilst there are at least 20 types that are more holistic. Acupuncture has medical evidence for it, for fibro too, altho the science behind it is in unclear, which makes it sort of holistic and not at the same time. Other examples are acupressure, osteopathy, chiropractic, myofascial release and many more, even more on the fringes are reflexology and Reiki. My favourites are acupressure for local pains and Chinese acupuncture for fatigue, whilst Western acupuncture hurts me.

I didn't know weighted blankets could help with fibro!

For some like me, they make it worse. My impression is that people in the UK like them more than elsewhere, maybe it's got to do with the typical kinds of bedclothes people are used to.

I've been using hot water bottles and heat pads a lot since finding out and they've been really helpful. Do you use reusable ones for when you're out and about? My most severe pain is in my neck and shoulders so I'm not sure if one would work for that due to size and length.

I've found whole body cryotherapy for fatigue, cold showers for pain, fatigue, unrest, sleep and temperature "reset" when I overheat or there's a temperature plunge outside. But also preferably hot water bottles, esp. for my very cold feet - Raynauld's. For out and about I don't think many people any, i.e. use the reusable ones, but it's well possible. I use these or iron products for cold hands and feet. For neck and shoulder pain, the exercises, stretches and acupressure mentioned above are the best. If there's nothing additional like OA I'm pretty sure from my experience these can be reduced to 10%, altho it's take self-discipline, doing them regularly several times a day and it may take 6 months or a year and come back for a while in flares. Some things took only a day or two when I found the right exercise though.

Sorry for all of the questions!

Keep 'em coming if this is what you're after, I'm glad to rack my brains further!

[Diddidi]

It can be daunting at first and you end up having to try everything to see what works for you personally. Everyone’s situation is different. I found that exercise and diet help me as medication just made me feel like a zombie. To start with, I was walking my dogs twice a day until I tore my meniscus on a walk (dog saw squirrel and I got caught up in the lead!). Had a long chat with the physio who gave me lots of great advice and I still do the exercises 4 or 5 times a week. I also do yoga at home with those exercises - I found a system where you try a new pose each day and I kept adding to the list. Some were too painful, so I left those out, but for the rest I started with 10 seconds each and then added another second each month. Am up to 30 seconds now for each pose and they really help - some days are easier than others. I also discovered couch to 5k and run 2 to 3 times a week. Again, I built it up over time, taking it at my own pace and give myself more resting time in between runs. I also do occasional swimming. I now find that if I don’t do exercise for about 3 or 4 days, I have a flare up.

Sometimes the fatigue is overwhelming, and that’s a day of complete rest for me. But bizarrely, exercising does help to combat that fatigue. It’s all about building everything up slowly until you find your limits.

Regarding the diet, I looked up the various vitamins and minerals that would help and found foods that contain these. I eat my ‘fibro’ breakfast each day - oats, seeds, raisins, brazils, almonds, blueberries and strawberries (just because I like them!). I decided that at least if I start the day with these foods, then it doesn’t matter what happens the rest of the day

On top of all that, my TENS machine is my best friend, as is my shower with hot jets (great for those neck and shoulder muscles!)

I hope this helps give you some ideas, and good luck!

[Rabbitmummy]

Hi, I have had fibro for over 3 years and have found it a rollercoaster of boom and bust. Its a constant negotiation with this condition. I was told by my consultant that its for life and is something to ...manage. I found keeping a diary useful initially to try and figure out what my triggers are. Often it's not the day after but the day after that in which I wake up flattened ( hit by lorry feeling) lol. I use ...spoon theory as a way to stay within my limitations to try and avoid doing too much and then getting PEM ...post exercise malaise. It's also a useful explanation for others who perhaps don't understand ..as you look well! Etc... Every person is different of course but I do tai chi and qigong. I find the routines and gentle movements help refocus from the pain and maintains my muscle strength. Find a support group too. It turned my life around when I met fellow fibromites.

[fibropatient]

Apart from medication I sleep on a cool gel pad, on for my head and a separate one for my body. I keep them in my fridge during the day to use at night.