How long will this big flare up last for????

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How long will this big flare up last for????

Postby Babybird » Sun Jul 15, 2012 1:16 pm

Good Afternoon All,

Cant believe that I have only just found you, but Im so glad I have.

My partner has FM and after 20 years has this Feb after seeing numerous Doctors, having lots of blood tests, MRI scans, Xrays and being told its all in his head and he has depression, has been officially diagnosed with FM by a Rhumatologist.

His mother has Lupus so for years thought he had the same thing. Am I correct in saying that FM is less common in men???

For years he has suffered with pain, pain that was sporadic and with no pattern we could think of, maybe rain was coming, or it was too cold, but he has always dealt with it in such a matter of fact way and got on with things. He would bandage himself up like a mummy, on his wrists, arms etc. apply deep heat, hot water bottles and microwave heat pads to help with the pains. The pains would come and go,...maybe last a couple of days maybe a week then he would be fine for a month or so.

So 4 weeks ago, now knowing he has FM, he had/is still having a major flare up. He thought at first he was having a stroke at the age of 38. His left side went numb then the pain came. The pain has been absolutely unbearable for him. Ive had to watch the man I love slowly becoming immobile, quiet and a shell of the micky taking loving man I know. He hasnt slept in our bed for 4 weeks as the only place he finds comfy is the sofa as it supports his left shoulder and arm, hips and legs.

The medication that he is on presently is:-

900mg Gabapentin 3 x a day
100mg Tramadol 4 x a day
35mg patch Buprenorphine (was taking 10mg but was having no effect)
4000mg Paracetamol 4 x a day
50mg diclofenac 3 x a day
40mg Seredol up to 5 x a day
7.5mg Zopiclone at night

And he is still in pain!!!!!!!!!!!!

Right then,......He is still no better on the pain relieving front,......I know this amount of Meds should comatose a horse,...but he is still for the majority of the day,..awake and lucid.

While im not at work eg evenings and weekends I am looking after him as much as possible,...to his embarasement,...he is very independant.

I guess what Im asking is how long will this flare up last???
How do you know if the Gabapentin isnt or is working???
Should we see a neurologist?? Could he help us???

We both know the nature of this condition and know that pain is part and parcel,....its just the amount of pain that is unbearable. On a pain scale of 0 -10 he has been at an 11.

I try to help and do anything to make him comfy, happy, laugh and take his mind off things. He is someone that has an enormous pain threshold and how he deals with this I just do not know. :shock: :shock: :?:

As someone that is a third party in this condition Im still learning about it and how to deal with him dealing with it.
I want to help him in anyway I can, I just want him to be pain free,.................its not much to ask in this day and age with all the medical knowledge we have is it,.......surely. :-?

Any feedback will be most welcome as we feel quite alone at the moment!! :-)

Thankyou for listening to my ramble :oops: :oops:

Jo
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Re: How long will this big flare up last for????

Postby fatalrazkaz » Sun Jul 15, 2012 2:17 pm

Hi Babybird

So sorry to hear about your partner being in so much pain. To be honest there is probably no point in being on half of it. My Consultant said that most pain relief is pointless for FM. She said the nerves magnify any pain by about 5 times. I dont take anything for the pain now as I am allergic to Paracetamol and I have a heart problem and chronic reflux so cant take Ibuprofen either. Afraid no-one can say how long a flair will last for but I would presume they get worse as you get older. I am always in pain now and suffer chronic exhaustion to the extent that I struggle to even do the simplest of housework jobs. We even bought a dishwasher because I couldn't stand at the sink that long without getting exhausted. I seem to be in one long flare up. I know its hard but he will have to accept that during a flare he will not be able to do normal things. I would suggest a trip to the doc to discuss pain control as there is no point taking tablets that are not helping. That is an aweful big list of painkillers and cant be good for the body to be taking that much. Funny coincidence I was diagnosed in Feb this year after 20 years of being fobbed off by numerous doctors.
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Re: How long will this big flare up last for????

Postby FluppyPuffy » Sun Jul 15, 2012 2:25 pm

:welcome: to the forum Jo :bear-dancing: :bear-dancing: :bear-dancing:

Sorry to hear how things are for your hubby, hopefully now you've found us, we'll be able to help you both with some support and advice :fingerscrossed: :fingerscrossed:

It is said that FM is less common in men, and thinking about the people who regularly use the forum, the males are outweighed by us females.

As for how long should a flare up last, the answer is that it will last as long it needs, unfortunately :facepalm: :facepalm: There is no way to say how long something will go on for as FM is very unpredictable and vague, your hubby could wake up tomorrow and find that things have really eased back, which would be nice :lol: :lol: :lol:

A lot of the meds used in trying to manage FM can take anything from a month to 3~4 months to get into someone's system and really start to take effect, so it may be worth asking your hubby's GP what was said about how long it would take. However, as you're probably gathering by now, things aren't that straightforward :waiting: :waiting: :waiting: WRT meds, what may suit/help one of us, may not do so for another, which means it can take time and be a case of trial and error to find the right mix of things for each of us :facepalm: :facepalm: :facepalm:

And wrt to seeing a neurologist, if you think there is something else at work, the best thing to do is see your hubby's GP, explain things to them and see what they think. The rheumy your hubby saw is the usual type of specialist we see about FM.

Just like the list of meds you have mentioned, most of us are on a cocktail of meds that could knock out a whole herd of :elephant: :elephant: :elephant: :elephant: :elephant: And altho it seems that they do very little, if we were to stop taking them it would soon be very apparent just how much of an effect they have on us.

It might be helpful for you to both have a look around the forum as it is full of advice and info on a whole host of subjects. And there may be some suggestions that can help with making things a little easier. Anything else you want and need to know about, just ask and we'll try to help you with it :bear-dancing: :bear-dancing: :bear-dancing:
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Re: How long will this big flare up last for????

Postby shazq » Sun Jul 15, 2012 3:04 pm

:welcome: to the forum Jo :wave:

Sorry to hear your hubby is having a rough time, with flares everyone's different, some people do get better after their flares but some like myself dont get better, you just get used to living with that pain :crazy: it is hard & more flares will come but we dont have a choice :(

Getting the pain under control can make a big difference and most are on a combo of meds like your hubby is but if they are not working for him you could ask your Gp for a pain review and get them to swap some around. Here is a link of some meds used to treat fibro-
http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx

We do have a few men on the forum so you should get your hubby to join & they will help support him too. :wave:
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Re: How long will this big flare up last for????

Postby Babybird » Sun Jul 15, 2012 6:40 pm

Thankyou for taking the time to reply.

As I guessed it seems to be a case of you have to work out what works for each individual.

Has anyone heard about Myofascial Pain Syndrome??? Could this be linked with FM???

I have also been having a read about trigger point injections??? Has anyone had these at all??? From what I have read many people have found great relief,....but then that's down to each individual again I suppose,......'sigh'

Can a change in diet help???? Vitamins??? Of course with the vits I would ask the doctors advice first hand,...but Ive read that Vit B12 can help some what.

I know it may seem Im throwing anything and everything at you,....but we are just so desperate to get this condition within the realms of copability we will try anything.

Dont get me wrong,...its not all doom and gloom,.....Im very determined to find a way through this not just for my OH but for me too,.....We wont be beaten and there is something waiting out there,...we just need to look in the right place at the right time :-D :-D :-D :-D :-D :-D :fingerscrossed: :fingerscrossed: :fingerscrossed:
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Re: How long will this big flare up last for????

Postby juejue » Sun Jul 15, 2012 8:55 pm

Hi,
I'm sorry your partner is in so much pain. If you are going back to the rheumy or gp it might be worth asking about whether the area you live in runs any pain management courses. They usually last for about 10 days over several weeks and include cbt , talks about medication, relaxation techniques which can help with the pain and gentle stretching exercises, this is all slowly built up.

It helped me a lot so may be worth checking.

I hope things ease up soon

Julia
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Re: How long will this big flare up last for????

Postby Babybird » Sun Jul 15, 2012 9:45 pm

Hi Juejue,

Thanks for you reply :-D :-D

He is under a Pain management nurse and he has attended the pain management course too. The only thing that really helped him was the talk they had about pacing yourself,..however,..he went to these when he was reletively well,..most of the ppl that attended had back problems, pain due to being obese etc but none with FM.

I can see how it helps on a psychological basis, understanding pain etc but with FM there is no rationalization with it. At least with a broken leg you can reason as to why you have pain,.........its because you have broken a bone etc.

TBH as I said apart from the pacing yourself part the classes really didnt have any bearing on helping with the pain that comes with FM. :( :(
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Re: How long will this big flare up last for????

Postby wolfstar » Mon Jul 16, 2012 12:44 am

Unfortunately finding the right combo of meds can take a long time, you can be trying out different ones over a couple of years untill you gte a combo that works.
The only thing is i find that they ease my normal days to 6-7/10 for pain but when it flares then nothing touches it.As with your hub goes to 11+/10 :scream-1: :pull-hair:

Also with your hub sleeping on the sofa you may find that apart from getting the support in the areas he needs it, it may also be so he doesn't ruin your sleep completly with the constant restlessness.My bet is more for the second one as i do it to give wifey a goodish nights sleep unless i need some help and then i'd use the paging system on our house phones.

As with the length of a flare 'how longs a bit of string' sory but thats about the most honest answer you'll get

When he feels a bit better get him to register, there's a few of us lads on here :-D
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Re: How long will this big flare up last for????

Postby animalhouse » Mon Jul 16, 2012 10:42 am

hi,

i think pacing is the best thing. although it hard to plan anything we just have to listen to our bodies and when it wants us to rest it gives us pain to slow down.

when it wants us to sleep - in the dayitime we nod off but cant sleep at night without endless meds.

there is no right or wrong answer but only a bunch of people on here who can support and advise whenever it all get abit too much.

so you and oh take care and will see you around.
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