In Remission

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In Remission

Postby TATT » Sat Nov 23, 2013 1:55 am

It's taken me a while to work out what I want to know with my slow brain. But I want to know what's your longest remission, is there a pattern?

I got bad fm/cfs for 4 yrs, 2/12 of that in bed struggling with agony daily and even wrote my suicidal notes I could not believe that anyone could live like this. Now I am managing better and have good days and like whoami, I have a short dance in kitchen listening to the radio whilst tidying up. Then after two days I can't get out of bed.

My longest remission is 4 days. What's yours?

TATT x
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Re: In Remission

Postby libbiek30 » Sat Nov 23, 2013 9:59 am

Hi everyone is different I haven't so far had days where I can't get out of bed, but my fm seems to be constant. I struggle on sometimes more than others. I really feel for u getting so low and have u got a supportive gp? R u on the right meds? I have felt as if I can't cope but the doc put me on sertriline as well as amitriptyline and this has really helped my mood so I can cope better. Glad it having some better days hope it continues. . :goodluck2:
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Re: In Remission

Postby pwinstanley » Sat Nov 23, 2013 11:05 am

Hi. Sorry you've had such a crap time. Sometimes the feeling to end it all seems such a relief, it would be over. My GP started out as being terrible referring to my pain as 'perceived pain'! There were no other GP's in the practice. We're now more in tune. It's affected my work, home life etc. I got very low and thought let's just end thus. I was started on the antidepressant Fluoxetine (Prozac) 20mg once a day (takes 1 to 2 weeks to kick in). It literally is a lifesaver. I also suffer from Obsessive Compulsive Disorder (OCD) and the Fluoxetine dose was increased to 60mg (which amazingly treats both). I've had a whole mix and match of medicines. I've not got on well with Amitryptaline (made me too sleepy) or Gabapentin (made me suicidal as can happen with that drug). I currently take and am doing well on: Meloxicam 7.5mg (anti-inflammatory), Dihydrocodeine Continus (slow release pain killer) 120mg (this has built up over time not an initial dose), and Pregabalin 225mg (anti-convulsant and the alternative to Gabapentin). Anti-convulsant work well in Fibromyalgia for some reason. I'm learning that pacing myself through the day is important and helps prevent the crash effect. Sleep is another important factor. If you're sleeping through the day then you may not be sleeping too well at night even if you think you are (see your GP to log at sleep apnoea). I too cherish the good days like gold dust and enjoy them. When I get a flare up I think s**t and rest and cope as best I can. My flare ups happen every few weeks. I normally wake up in pain and quite stiff until my morning meds kick in. Having this forum really seriously helps as others know what it's like. Hope this has helped in some way.
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Re: In Remission

Postby JYB » Sat Nov 23, 2013 11:18 am

I know where you are, I've been there. Crying in bed with facial pain that never seemed to end. But it did end, so hang on in there and you will get through this n come out the other end. Keep going to your appointments n eventually something will help. No one has that miraculous answer we all search for, it might be a combination of things that will help in the end but you will find your way through. I know it's difficult to see that. I kept the thought of suicide to myself, but in a strange way it was comforting to know I had a way out if I needed it. Thank God I didn't take that way out, I would have missed out on the rest of my life which is pretty good now, so you never know. Hang on in there n dig deep to find strength to carry on!
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Re: In Remission

Postby TATT » Sun Nov 24, 2013 8:56 pm

Thanks for the replies, I am much better now than I was when feeling suicidal but still appreciate your kind words, that's what I love about my fibromates.

I can't believe over 500 views and only 3 replies :roll:

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Re: In Remission

Postby *Lisa* » Mon Nov 25, 2013 12:56 pm

TATT wrote:I can't believe over 500 views and only 3 replies :roll:

TATT


This can be non-members reading as part of the forum is open to the public or facebook people as there over 20,000 *likes* on UKFM FB page.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: In Remission

Postby FluppyPuffy » Mon Nov 25, 2013 1:07 pm

*Lisa* wrote:
TATT wrote:I can't believe over 500 views and only 3 replies :roll:

TATT


This can be non-members reading as part of the forum is open to the public or facebook people as there over 20,000 *likes* on UKFM FB page.

And there are the spiders and bots that crawl the web, visit pages and look at things on t'interweb and build information into search engine indexes, which enables users to locate sites when they perform a search.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: In Remission

Postby LouLou » Mon Nov 25, 2013 1:23 pm

Hi Tatt

When I was first diagnosed a few years ago ever day felt like hell the pain the fatigue it was just above and beyond managable levels. Then as I started to learn more about having FM and started pacing and figuring out what my body needed and things started to improve.

As long as I do pace things out I find I can do quite a lot more than I used to. Every day is still different pain level wise - I am in pain 24 hours a day 7 days a week but the actual level of pain changes from a bearable level to a level that leaves me on the sofa unable to move.

Since setting myself a routine and sticking to is as much as I can I have found that the bad days have eased off, though the pain is still there all the time. I don't think it's so much to do with the FM getting better as it is to do with me coping with things better.

I do still sometimes get it wrong and overdo things - I'm stubborn like that lol and also some factors I can't control like the weather (cold makes my pain worse) and being stressed or upset about something that happens. But on the whole I do feel like I am making some progress.

Hope that answers your question
xx
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Re: In Remission

Postby fibro-lu » Mon Nov 25, 2013 1:50 pm

hi TATT,

agree with LouLou
it's a learning curve :easter3:
FMS is there 24/7 but varies, today I'm nausea with migraine :puke: , brain zaps :crazy: and lots of sweating :snowgrumpy: plus the pain :hit1: which today is increased by whatever - weather :snowing1: probably- or overdoing it again yesterday at church by just enjoying being there with my brothers and sisters with lots of hugs :grouphug: :grouphug: :grouphug: and :hugs: :hugs: :hugs: catching ups - or still another kick in the :girl_moon: from Tramadol to keep it's claws in :twisted: etc

not much I can do today - one load of washing - plus the dishes - need to go to bank - otherwise it would be another home day - kept warm etc

pacing - not slugging - trying to do every day 70% of a "normal/average" FMS day if possible - be kind to myself when can't do that
all the best :cow-wave: Lu
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Re: In Remission

Postby whoami » Mon Nov 25, 2013 3:29 pm

Tatt....I have to agree with Fibro-lu and Loulou,

I have found also that learning about fibro and listening to your body is the answer to a better quality of life.

At the beginning 24yrs ago, life was hardly worth living. Everything was new. I had never heard of fibro, I was scared. Over the years I have learned to relax, accept things as they are and get on with life.

Everyday I hurt. Some days you can add migraines, vomiting, the scoots, stiffness you know the list. I have medication that controls the pain well enough to function. However...if I do something that is over the threshold, well then I suffer as others do.

I personally don't think it is remission we go through. I think it is that we have overdone things, it catches up on us and then we pay dearly, making the time before look like we were almost healed, LOL
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Re: In Remission

Postby dotty lotty » Mon Nov 25, 2013 4:58 pm

Hi I also have to agree it is a learning curve. Lately I have been getting as much info as I can but putting some of it into practice is still work in progress. :facepalm: :facepalm: :facepalm: :facepalm: Hopefully it will come easier one day soon especially the pacing myself bit :dunno: :dunno: :dunno: But I can be stubborn and its is me that suffers.
The cold is a nightmare and I have electric shawls everywhere which are a comfort. :hugs:
Pain free would be lovely but pain tolerable is acceptable just now. O
ne thing I have noticed recently is a [chocolate] [chocolate] [chocolate] craving in the afternoon.
I only realised how mush I missed chatting with everyone till I came back to the board so no more going off and trying to pretend I don't have fibro :teddy-bear: :teddy-bear:
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Re: In Remission

Postby TATT » Mon Nov 25, 2013 5:13 pm

Thanks Lisa and Fluffy,

I did not know this, by the way, what are trolls ?

I agree with all you ladies, as Loulou explained that's exactly where I am at. The reason I guess I am searching for people who had had remissions is the idea of positive thought and that it is so powerful.

Also my husband wills me to get better and he asks me to believe that I will. I do see the idea of the positive thinking but, in reality I feel that I am going to have this for the foreseeable future. Maybe I need to burst his dream, help him to understand there will be days/hours when I can be my old self but I will pay for it after. Pacing or consequences.

The other day I was listening to magic radio in the kitchen all the oldies, I started to sing and dance and it was the best feeling. Unfortunately each song was getting better and I lack discipline, so must have on off sung/danced to four songs.

Two days later ME kicked in and can't get out if bed, BUT I think it was worth it to have the four minutes and the feelings afterwards reflecting. Off I ramble :roll:

Hmmm

Also Dotty Lotty, I totally agree, love feeling connected to the forum ladies and gents. That's a nice feeling too. X
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Re: In Remission

Postby fibro-lu » Mon Nov 25, 2013 5:17 pm

welcome back to the playground lotty :cat1: :cat2: :dogchasecat1:
all the best :cow-wave: Lu
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Re: In Remission

Postby whoami » Mon Nov 25, 2013 10:14 pm

Tatt.....don't burst your hubby's bubble.

Yes in reality this illness is going nowhere but you are still the same person. Fibromyalgia does not define you. You can still enjoy everything you always have. The only thing is that you will have to learn to enjoy things a little differently. You can dance but not as wild, as fast or as much.

It is great your hubby is so positive. It will help you on the bad days. Tatt, remember you are not fibro, it does not define you or determine your life.

You enjoyed your time, you sang and danced, you were happy. Those 4 minutes are the reason to keep looking forward. For 4 minutes fibro didn't exist. Keep up the positive attitude.
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Re: In Remission

Postby tonydin » Tue Nov 26, 2013 12:29 am

:-D :-D and i thought i was the only one whodanced in the dam kitchen :oops:

maybe its a new symptom :yikes: :yikes:
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