How do you know when a flare is over?

[Sueb24]

Hello. I have RA & fibro. I have been largely in remission from fibromyalgia for two years and was leading a ‘good’ life in retirement until a year after losing my life partner. I suffered a flare from overdoing it when I had a sinus infection. Then, along with the flare, the grief, the anxiety and depression of trying to cope & living alone, set in. All of which have made the fibro worse than it has ever been. I’m now largely housebound with all the usual flare symptoms - pain, muscle spasms, difficulty sleeping etc but it doesn’t seem to be resolving.

My question is - should I rest as much as possible until it all subsides ( 3 months so far) or start to gradually doing more despite the pain & other symptoms? When do I know the ‘flare’ is over?

 

[SBee]

Morning @Sueb24
I wish I could answer your question to help a little. I hope someone can jump in to clarify things.
just wanted to say hello. Am so sorry for all you have faced recently and continue to face. I hope you have good support around you and that this forum can also help with that.

I was only diagnosed with fibromyalgia in December so am still working on what passes for ' normal '. Then just 2 weeks ago was diagnosed with inflammatory arthritis as well ( seronegative) so can't tell what form it takes yet. So I am in no way experienced in either condition to work out what symptom is from which, the symptoms seem tangled up as one.

do you have access to a rheumatologist nurse to ask for help with this?? My understanding is you can contact them when in a flare up? Can they offer a one off steroid injection to help during a flare up? Or can a gp refer you for physiotherapy to help you work out whether to rest or build up slowly?

 

[sunkacola]

@Sueb24 You will know when the flare is over because you will feel better, or the pain will have subsided. A "flare" is a term that simply means a period of time when things are worse than "usual", whatever that is.

Everyone is different, so what works best for one person is not necessarily what works for the next. Generally, though the best way to manage fibromyalgia is to eat genuinely healthy food, get some exercise every single day no matter how you are feeling, reduce stress in your life, and maintain the most positive attitude you can by doing what feeds your spirit and finding joy where you can.

I don't recommend resting until it is over, because inactivity is never healthy. Just make sure that the kind of exercise you get is not making your pain worse or fatiguing you too much. I recommend the gradually do more approach, but stay in touch with your body.

 

[Ian waxman]

Hi.i hope your feeling ok.fybromyalgia affects people in so many ways.your emotional turmoil and overdoing things have certainly added to your fybromyalgia.there is never 2 of the same people due to all the elements and sheer desperation with fybro.the best way I’d probably go would be to talk to your doctor,what meds are u currently taking?gentle walking and swimming if possible.do what makes you feel happy and I know this doesn’t sound easy but sitting in the house makes the flare ups worse.i don’t think doctors will give u steroid injections for fybro but to be honest I’ve never asked.tell them exactly how you feeling,refer you to pain clinic.i’m on 50mcg fentanyl and it’s worked wonders for me due to my full body pain I’ve had for 25 years.i hope you find a positive way forward from such a traumatic time and please keep us informed.don’t feel guilty taking medication,it’s usually the only solution.we’re here to help best we can we’re all in this struggle together

 

[Sueb24]

Hello & thanks SBee. I have made an appointment with my Rheumatologist yes. There is a helpline at the hospital although the nurse told me it was mainly GP’s that managed fibromyalgia these days. That really isn’t working for me - different G.P. to talk to every time, no
consistency, blah, blah….

One of my main problems ( apart or because of the fibro) is sleep anxiety so I can only get a decent night’s sleep with a sleeping tablet such as zopiclone which I’m not allowed to take for more than three nights in a row and they will only prescribe 7 tablets at once so it’s a battle every other week to get them. (I’ve only been issued them twice actually). Hence on the other nights I get little sleep which compounds everything as I’m sure people know. (All suggestions welcome….)

Before the recent episode I was only on 30mg Duloxetine for my fibro & that was fine. It’s now been increased threefold due to my anxiety (and probable low depression levels). In the past when things were really bad I was put on Lyrica but came off it as soon as I could because of the weight gain. I suspect the rheumatoid consultant will suggest it again when I see her but I really don’t wish to go down that route again if possible.

I’m trying to stay positive with the ‘this too shall pass’ in mind but it really is difficult. Thanks for your advice.

 

[Sueb24]

The ‘gradually do more approach’ is what I’ve been aiming for but since the energy doesn’t seem to be rising (the pain has diminished
to some extent) that isn’t possible. I’m drenched through every night and wracked with muscle spasms if I even do a bit more in the house.

 

[Sueb24]

Thanks Ian. I’m desperate to talk to my rheumatologist later this week as myself and my family are really in need
of advice. Medications ( see my reply to SBee). I’m going to start talking to a private counsellor soon. I think the physical therapy
is too soon as I’m hardly even managing in the house. I live in a small village & really need to continue to drive or I will be really stuck.
My nearest therapy pool is a good 10 miles away & getting there is out of the question at present. One day eh? This ‘flare’ surely can’t last for ever….

 

[Elainev]

I'm so sorry to hear what your going through, I just have one comment to make on sleep, I was getting no sleep and am on 60 mg of Duloxotine, my G.P suggested I have my Duloxotine two hours before I go to bed, I must say , and I know we are not all the same but it worked for me. From zero to maybe two hours a night I am now getting 5 to 6 hours, which feels great, good luck.x

 

[Sueb24]

I changed from taking it at night to taking it in the morning as the enhanced serotonin levels were waking me up all the time. I’m trying some ‘alternative’ sleep remedies but so far to no effect.

 

[SBee]

Hi @Sueb24
I understand the difficulty in trying to speak to a particular gp for continuity. Have you tried the NRAS ( rheumatoid arthritis site charity?) They offer a helpline you can call and I know several on the have both RA and fibromyalgia, they may be someone to talk too prior to your counselling.
It's a positive strong ask for counselling the emotional effect on yourself and your family should not be underestimated and I know physical symptoms and emotional\ mental symptoms have a knock on effect with each other.

Whilst exercise as such can be hard on a flare, I try to use the thought of movement instead, it's a head thing for me in that the word exercise can conjure up impossible thoughts of demanding exertion, whilst movement is more gentle and ensures I remain moving muscles etc but without the strain or potential pain ( or boom and bust situation ).

Try not to beat yourself up, so what you can on any day, you can't ask more from yourself. Give yourself credit for seeking groomsmen you are feeling understandably a little less strong than you would like. Lack of sleep is so debilitating.

make some short notes prior to your rheumatologist appt? I always forget to ask something. Take care

 

[sunkacola]

Whilst exercise as such can be hard on a flare, I try to use the thought of movement instead, it's a head thing for me in that the word exercise can conjure up impossible thoughts of demanding exertion, whilst movement is more gentle and ensures I remain moving muscles etc but without the strain or potential pain ( or boom and bust situation ).

^^ This. Well said, SBee.

The point is to keep moving. You have to keep moving or you will find yourself unable to move. But it can be almost any kind of movement, and doesn't have to be demanding exercise. Walking is great. Dancing a little bit to a song you like is great. Stretching is great. You can find ways to move that will help and not hurt. You just have to keep trying things.

 

[Ian waxman]

Thanks Ian. I’m desperate to talk to my rheumatologist later this week as myself and my family are really in need
of advice. Medications ( see my reply to SBee). I’m going to start talking to a private counsellor soon. I think the physical therapy
is too soon as I’m hardly even managing in the house. I live in a small village & really need to continue to drive or I will be really stuck.
My nearest therapy pool is a good 10 miles away & getting there is out of the question at present. One day eh? This ‘flare’ surely can’t last for ever….

The flare up can last a very long time.one day feeling pretty good the next wrenching yourself out of bed.when it first started with me my wife was bathing me in voltarol,things got progressively worse,violent migraines,nausea,pain off the scale,depression and stress that my wife had to endure.i started drinking a lot to numb the pain and that spiralled to nearly a bottle a day.went back to the doctors and they put me on reletrans and diazepam plus tramadol.its been a rollercoaster of hell and I’ve honestly had 25 years of pure misery.i asked the doctor if I could try fentanyl due to me reading in depth of the benefits and it worked.the pain and stress eased and to be honest I can to a agree live my life.if you feel like your not in the right place with pain,stress,any fybro symptom go to the doctor and don’t give up even if u bug them,fybro does not give u quality of life and it’s only by telling the doctor and pain clinic what is working for u will you get the relief you need.its took me so long to get to a place where I can actually get out of bed without feeling like death literally.please stay with it and whatever works best for you don’t settle for feeling wrecked.i never gave up i constantly bugged them and tried everything to get to a positive feeling.only you know how you feel but there is medication that will help you get your quality of life back hopefully.youre not alone,talk to the docs and us and be open with them,i really was desperate for relief and its took a long long road.stay positive

 

[Sueb24]

Wow Ian. You really have been through the mill. I had ME/CFS for 8 years in my 40’s. I got through it eventually with the RA being diagnosed roughly halfway though. Then the fibro got diagnosed and I’ve had some bad times with it but never anything quite like this. It just doesn’t want to let go. Stress, anxiety and depression are so damaging to our bodies.

 

[Sueb24]

Just a quick follow up to my Rheumatoid appointment last week. Lovely new consultant who spent a long time listening to everything I said and followed up with physical exam and some blood tests as she didn’t recognise the night sweats as part of fibro. (I get them in flares. Anyone else?)
Basically nothing more to offer until I feel strong enough to start maybe some warm water exercise or gentle walking. I think the duloxetine is starting to ease the nerve pain & I’m now just using herbal products to help sleep. I ran out of my magnesium supplements last week and I’m wondering if that is why the muscles are more painful and stiff first thing. Maybe not?