worse or not

[sarah-d]

i read some where that fibro doesnt get worse i was diagnosed with it when i was 15 and it started in just my hands im now 29 and its all over my body and i feel it get worse all the time . how do you feel about your fibro?

[tofty]

hi sarah ive been diagnosed a year now and i feel mine has got worse ,get a lot of flare ups xxx

[Sarah-Jane]

I find my FM is progressive. It stands to reason it must begin somewhere, the problem is that it is rarely identified until later when you have more sypmtoms. I keep being told that I cannot have FM because it is mostly based around one hip, but as I am still in the process of being diagnosed I have found that more of the things that are wrong with me can be laid at the feet of FM!

There have been many things 'wrong' with me but unlabelled, but put together they do add up. However that means that I am querying with my work whether my migraines previously thought to be PMT based could have been FM? They are unwilling [I think] to go back and relabel things unless they are forced to.

Hopefully things will become more clear soon, as I am off to see my occupational therapist on Thursday. I was meant to see the doc today, but was struck down with a migraine!

My hands, elbows, shoulders and back are all giving me pain, but FM?

I look forward to seeing the answers you get.

Take care.

Soft hugs.

[Rach1977 in reply to Sarah-Jane]

Hi Sarah Jane, i also get the most worse headaches every possible, whether they are migranes or something else I am yet to discover, however my GP gave me some tablest last week that you disolve on your tongue and can help with headaches. It may be worth an ask, they are expensive however they may work. Just a thought to help you out. If you want the name of them message me and I will let you know.

Sorry to hear you are having work problems etc , I can fully understand how you feel as I have similar problems too. xx

[Hidden]

i was diagnosed in December and i get worse every day, the pain is worse in some areas one day then in another day, i also have joint hyper mobility which has also got worse.

i get a lot of flare ups as well

i'm lucky i have an understanding family, doctor and physio which helps

Take care

Sarah

[trisha64]

im pretty much the same i cant sleep tonight as my right shoulder elbow and hand ae in agony nights like this i would happily cut my hand off

[Rach1977]

I am not totally sure it does get worrse over time, or maybe that is me telling myself that and fighting this horrible illness??? I will fight it, it will not fight me!!! Grrrrr!!

I am a massive believer in pacing, management and listening to your body.

I can have flare ups which are awful, but then I can have a few days with little symptoms.

I think the illness/ us fall into a bit of a vicious circle. The worse we feel the less we do, the less we do the more our body becomes weaker and we lose muscle density and strength. Therfore we are not strong enough to fight the next day. Therfore we feel worse.

I had a month or so where I stopped yoga due to the fact I was shaking in the class and was not strong enough, so when I stopped I felt worse. I then recognised the need to do the yoga and re started and I am stronger again now and feel I have more strength and less pain.

However I fully appreciate everyone is different and everyone has to find their own limits and capabilities. Becoming knowledgeable about how to improve conditions is a benefit and definately a bit of positive mental attitude. Don't get me wrong when in pain that is hard to do.

I really hope that we all can have more pain free days than days in pain. Hugs x

[Hidden]

I THINK LOOKING BACK iVE HAD FIBRO FOR OVER 30 YRS, IVE ALWAYS HAD UNEXPLAINED PAINS STIFFNESS ETC. 3 YRS AGO I REALLY STARTED TO GET VERY ILL, NOW ITS CONSTANT MY MOBILITY HAS GONE

[Sarah-Jane in reply to Hidden]

Thats awful Lally, I hope you have a supportive family around you? When you say your mobility has gone, how much and how far do you mean? I have to use a wheelchair for distance, and scooter for longer distance as I don't drive, but do you mean getting about your own home?

[Hidden]

Ive gone from being a busy mum , a community carer, walking 50 miles a week,working all hours and on call24/7. to now every step is agonizing, as for me family the kids are great, hubby doesnt understand and Ive been told on occasions it all in my mind,

[sarah-d in reply to Hidden]

im a community care and i fell over going to one of my calls im worried im going to have to give it up but cant afford to as im told i can work even tho my doctor said i couldnt

[dawny2187]

i was told that it can get worse ie i would get flare ups and settled times. so it is not a static condition and although its not degenerative you can go into a type of remission and then have flare ups. im also due to have a jaw op and my consultant has said to expect my symptoms to worsen after surgery