I've often been asked over the years what a flare is.
Well, here is my definition:
flare: a significant increase in symptoms above what is normal for you
A flare can be different for anyone. For a start, what is normal for you will not be the same as what is normal for the next person living with Fibro. And Fibro flares are often accompanied by flares of comorbid conditions (conditions you have alongside your Fibro) - so the flare of someone with Lupus and Fibro could well be very different to the flare of someone with Migraine and Fibro.
This is topical for me as I think I'm heading into a flare, my first for 18 months. I'm incredibly lucky in that my Fibro is now usually extremely well managed - I would in fact go so far as to say that I have been in remission for a few years now as, apart from a couple of very short lived flares, I have been pretty much symptom free without daily medication.
I have had a "flare plan" for years and formulating one is something I really recommend to anyone living with Fibro. It isn't a complicated process or a formal one, it is just knowing what you need to do when you think you are heading into a flare (or are definitely in one) so as to minimise the symptoms and keep the flare as short as possible.
My flare plan always looked like this:
1. Rest more. Reduce stress. Prioritise tasks - if something isn't urgent, it can wait until I feel better. Limit outings and socialising, especially if I know it is something that will tire me.
2. Improve sleep quality. Poor sleep quality is a hallmark of Fibro and in a flare or with out-of-control Fibro, it can be a catch-22 - your body can't recover until you improve your sleep, your sleep won't improve unless you get control of your Fibro! Sleep hygiene has a part to play for many people - go to bed at a reasonable time, get up at about the same time every day and make your bedroom a restful place without stimuli (taking work, laptops, games consoles or TV to bed are unlikely to help your brain switch off). Supplements, such as valerian, can help some people. But for me, medications have been an important part in improving my sleep quality and dealing with flares. Clonazepam has been a very helpful medication for this for me, as not only does it improve sleep quality (by raising levels of GABA in the brain, it reduces the over-stimulation of the Autonomic Nervous System that is a problem with FIbro), but it also has a muscle relaxant effect, so it really helps me with the myofascial pain that often accompanies my flares.
3. Pay attention to physio. Like so many people with Fibro, I can benefit from doing a simple daily routine of stretches and basic strengthening exercises (all prescribed for me by various physios over the years). And like so many people, I forget to do this on a daily basis! But flares not only remind one to do what we should be doing, but remind us exactly why we shouldn't stop doing it!
4. Spend time in water. Hydrotherapy is the complementary therapy with the best level of evidence behind it for its use as treatment for Fibro. I certainly find warm baths and showers helpful for pain, especially I incorporate some stretches with time in the water.
5. Get a massage, I am fortunate in that I have a very experienced myofascial release specialised massage therapist in my town (Sue Perry at Two Nine O Five Pain Relief Clinic). Sue has worked in me for years now and was a big help in getting my Fibro under control. Many of my flares (especially migraine, TMJ and muscular pain) are myofascial related and I've found that MFR is the best way for me to get this under control. This is something I have to pay for privately, but we've always found it's well worth it.
6. See the doctor. If the above doesn't work, then I consider whether anything else could be happening (like this week I'm going to the GP to ask to get my vitamin D levels rechecked as they have been low in the past and it is the middle of winter!) and if not, I see my Fibro specialist for a modified Myers cocktail injection (an intramuscular injection of lidocaine and various vitamins and minerals) to give my body a boost).
This is my first flare as a mother and I knew it would be harder now. Parents of young children are often the people who struggle the most with getting control of their Fibro. As a parent, you are used to prioritising your childs needs above your own and it can hard to readjust and say to yourself and your family "I need to help myself now or I can't be the parent I want to be".
Improving sleep quality and introducing medications is tough when you have a young child that wakes at night and isn't always happy to not have their Mama available. And now my working time is limited to when I have childcare, it's harder to rejig my schedule to enable me to rest more. But we're working on it and I'm confident I'll nix this flare soon.
Update: I saw my myofascial release therapist (she's done so much extra training now she's more like an osteopath than a massage therapist!) and she identified that I had put my pelvis out of alignment when carrying my daughter awkwardly one day. I had thought it was my neck that was the problem, but my pelvis was putting my back and neck under strain, which was then flaring the Fibro. After a long treatment session and a few night's reasonable sleep, the flare started to shift! It's now definitely gone...though I now have a stinking cold thanks to my daughter!
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LindseyMid
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Oh dear, sorry you have a flare up, what a shame after being in remission for a period of time. Lets hope it's just a short flare up and you can get back to normality soon for the sake of you and your family!! x
After nearly 20 years with this illness I am amazed by words like "control" and "Fibro specialist" - where have I been? I am completely unsupported and struggling with what sounds like a permanent flare, and have now developed something which seems to be a form of arthritis ... unless its FM reappearing in a new form? I don't know where to begin to access the "help" you are talking about!
Hi Artyrosie, an issue we're working on tackling afresh this year with FibroAction is how little things are changing for many people with Fibro "on the ground" compared to how much the knowledge available has changed over the last 20 years. It drives me crazy how many people like yourself are still struggling with no support and not knowing what to do or where to go.
The Becoming An Expert Patient articles on the page below are a few years old now, but I stand by much of what I wrote then, especially the importance of Knowing your diagnosis. Have a read, then come back with questions and we'll see how we can help!
Hi Lindsey, I am trying to find out about the Myers cocktail. I have a friend who was treated with it last year and felt a lot better after receiving it, but later developed RA. She thought that the injections might have brought it out in her, and although she felt so much better after having them is frightend to have them again.
Have you heard of anyone else having any problems after having the Myers Cocktail.? I haveFibro and suffer from chronic fatigue I am interested in these injections but worried about any adverse effects as I have family members who have RA.
Lindsey thank you so much for your advice. I have now been in flare up mode for months. Has this ever happened.to anybody or been heard of before. Is it even possible? Losing my mind here
Does any one else have stroke like flares I fall asleep trying to watch tv to relax then wake to the crushing tightning all over body ,jaw stiff mouth pulled down to one side , heavyness in arms n legs anduncontrollable tears . Chest pain and lump like nodules all along under bust , blurred vision too lasts around an hour love to hear if I'm not alone Judy have Cfs anf chronic fatigue
hi , i feel somewhat the same as you , if i want to relax i think comfy chair tv , but i cannot concentrate the same with laptop , my eyes go all heavy and i feel exhausted and sleep a while but upon wakening i am stiff sore skin feels like its gonna burst, my arms heavy and legs , the pain and fatigue is the worst .. hope you feel better soon ..
Hi Lindsey I have been in a flare up now for 8 mouths and when I go to see my gp she just tells me that they are doing all they can for me I have never heard of the myers cocktail can you get this in the uk ? I hope to hear from you soon . sending soft hugs xx
The term "Myers Cocktail" is most commonly known by UK patients in reference to a modified version of the Myer's cocktail that is given at some private clinics. This modified Myer's Cocktail is an intra-muscular injection, rather than an intraveneous therapy, and is also given with an injection of lidocaine for pain reduction.
Here is some info from a site in Harley Street, London who offer Myers Cocktail -
I thought this old post by the founder of Fibroaction charity might interest a few people today! I am struck by her talk of being "in remission and "symptom free without medication"! I wonder who else on this site can say that at this time?
Having only joined late last year I wasn't around when she was posting but I'm wondering why there isn't or doesn't appear to be much info about how she achieved this lively "in remission" phase which seems to have continued to this day. Such positive outcomes seem to be hard to come by so sharing them feels important to me in giving all of us that all important Hope.
I'm always looking for good news stories so if anyone knows where I can read more about her story of her apparently successful journey with Fibro please point me in the right direction!
She did all of the above I believe as well as seeing the late Professor Davies FMS clinic London at the time - who did take NHS referrals as I had one back in 2008/9 and he is a great loss to the Fibromyalgia community as a whole. She had Myofascial release I believe regularly too.
I myself had a period of so called remission where my quality of life was not healthy but managed without pain due to medication, exercise, pacing and a scheduled rest each day. My Fibro was bad for 2/3 years - optimal for 2/3 years and now had viruses so back bad again for last 2 years but the optimal I would say was a near to healthy life as I could be still had Fibro but managed to maintain it.
This post is FAB isn't it - some of which used to be in the FAQ I wrote before we formed Fibromyalgia Action UK , so I am sorry you haven't seen it before. The FAQ will be back as have copies of the content but need to tally up with the information when on the fmauk.org for the URL links.
Lindsey is very knowledgable & did a great deal for the Fibromyalgia community and now she is incredibly skilled and has knowledge in her Doula work.
Thanks Emma....The subject of 'remission' in Fibro doesn't seem to be getting much 'air space' on the Forum...yet surely that is what we all long/hope for? I hadn't heard of Prof Davies so interested to hear what his FMS clinics used to entail?
Also interested in your own story of 'remission' periods......yet you say your "quality of life was not healthy" whilst in remission or have I read this wrong? Getting to and maintaining "a near to healthy life" with Fibro as you describe it is surely the 'holy grail' for all current sufferers? I hope you can find your way back to that health position again and take us on your journey with you. I do despair sometimes at the air of hopelessness and helplessness that some seem to live in according to what they share on this Forum. My positivity may irk some but I genuinely believe there is ALWAYS something, no matter how small, we CAN do to help ourselves in some way.....minor or major. My focus is on what I can do for myself, rather than criticising the world and his wife for not giving me X, y and z. That way I don't feel so powerless. ...which is surely a horribly negative and soul destroying place to be.
It would be good to hear of others experiences of achieving 'remission' from Fibro, how they achieved it, maintained it, how long it lasted etc? If your and Lindseys experiences are anything to go by, maintaining Hope that we can regain better health to some degree is not just 'pie in the sky' but a realistic reality!
Thank You for your reply. Yes I achieved a optimum level of health but wouldn't call it healthy as such as still having blips if trying to do to much or caught a cold etc.
This could lead to a discussion but I believe with Fibro you should avoid opiates apart from Tramadol as I have mentioned the reasons before here;
The potential side effects from Opioids outweigh any benefit due to the lack of available opioid receptors as reported by Lindsey.
Of course as Fibro is not always a primary condition having other conditions affecting the body and exacerbating Fibro makes avoidance of strong opioids maybe more difficult or a reduced chance as well as a complex health situation reduces the combined approach success possibly.
In terms of medication I think the SSRI'S, SRNI'S & Tramadol and other drugs being researched to aim to right chemical imbalance is the way forward. Alongside other therapies like Lindsey has mentioned in the article. Therein also lies problems as some are sensitive & intolerant to certain medications. So it is complex and can take a while to find the right combination for you. As outlined by the charity awareness, diagnosis & treatment education to make a patient's journey easier may help too.
Basically it is a combination of aspects but for some often dependent on severity & other disabling conditions a degree of optimum health may be achieved. But to be honest in my case it took a while to get there & it wasn't easy I would say.
The FMS Clinic is still running but with Dr Jenner at the helm so to speak, here's the link;
I was directed to your post today, and its extraordinary, am following the same path as you, but no longer need the injections, I am now taking CBD Oil and find its just as effective. However I'm having huge problems with sleeping, so will follow up your suggestion of Clonazepam, I'm trying out Zopiclone sleeping tablets and they don't work, the Dr has doubled the dose, this is the first time I've tried sleeping tables and I'm not to happy about it, but my days have turned into nights which disrupts my eating habits hence everything goes out of kilter and the brain fog is really difficult to cope with as a result. I have also used Sue Perry, seeing her was a turning point for me, I cant recommend her highly enough. I broke all my symptoms down and dealt with each one individually and used supplements for each condition, and used Sue's visualization techniques for helping me with pain the result being I have been medication free for six months now with very little pain.
I hope you are still feeling well and continuing the manage this damn Fibro, maybe see you around the "Bury" some day.
Lindsey is no longer on this site, just in case you wonder why she doesn't reply. FibroAction merged with Fibromyalgia Association to make Fibromyalgia Action UK (FMAUK) the charity running this forum and she stepped down to further another career.
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