I just don't get it?

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

I just don't get it?

Postby migrembe » Mon Jun 09, 2014 2:03 pm

I have found that my symptoms can change from hour to hour no matter what i do or do not do. I have not found any medication particularly helpful, however i do find that my anti-depressant helps me to go to sleep for several hours, even if i am woken for bathroom breaks.

Yesterday was a relatively good day. I take standard pain killers you could probably buy over the counter from a pharmacists, many of the other pills i have been put on have left me with adverse side effects - the 1:1000 kind that even the dr's haven't heard of, but are on the leaflet enclosed with all medication - or i have a allergic reactions to them within a dose or two. However this is not about any of the pills or potions i may or may not take, but about the fact that yesterday i had a relatively normal day for me. However things just changed.

I had the usual aches and pains and i always suffer badly with fatigue. So by about 9pm i was in bed and shortly after asleep. I woke at 3 and felt like a new person, no aches, no pain and no fatigue. After a bathroom visit i went back to bed and sleep and woke again at 7am feeling like a herd of elephants had walked over my body and someone had plugged me into the mains electric. All my plans for today were destroyed. After two doses of pills and a very hot bath the pain has now subsided to it's usual aches - it's now 2pm. It is all beyond me. Before all this i worked as a staff nurse. now i can barely wash the pots and feed the cat, let alone feed myself.

It is no wonder others cannot understand it all, we don't understand it ourselves!!

UKFM Member
Posts: 429
Joined: Fri Feb 24, 2012 8:23 am

Re: I just don't get it?

Postby denys » Mon Jun 09, 2014 2:32 pm

Unfortunately everything you said sounds very familiar and I think it is the nub of the problem, the medical profession is trying to treat our symptoms but they dont stay the same they are always changing so at times what worked yesterday will not work today and that is why we end up on so much medication cos its a case of throwing another tablet into the mix :coffee1: :dunno: :dunno: :dunno: :dunno: :dunno:

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.
User avatar
UKFM Veteran
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: I just don't get it?

Postby Jeany » Mon Jun 09, 2014 2:45 pm

I am very sensitive to most medications also, and try to do without as much as possible.

The last few weeks for myself have been very bad, so I am pleased that my 3rd appointment with The Specialist ME/CFS Team is tomorrow. I don't yet know if they can help, as they are still assessing me, but they are very good at listening, and also very caring people.

I think I may have Sleep Apnea, as I wake myself snorting ( not attractive i know), and like most of you on this site sleep very badly. I won't bore you with my endless list of other health issues, although it could be useful in sending you to sleep ha ha.

I will update you in the next few days as to how my appointment went with the specialist team.

Jeany x
UKFM Member
Posts: 120
Joined: Tue Aug 20, 2013 10:14 am

Re: I just don't get it?

Postby Xena » Mon Jun 09, 2014 9:19 pm

Nodding read your post, I just don't get it either. There's no rhyme or reason to my pain flare ups, most of the time. I used to be the assistant manager of an animal rescue, I had so much strength and stamina and felt I could always rely on those two things. Now just tapping a nail into the wall or lifting a heavy bag is such an effort. I used to walk 10 miles a day, now I barely manage 1!.

I'm also sensitive to meds and elected to stop Amitriptyline after a short time because it made me feel really odd. I've agreed to just take pain relief (Co-Codamol) - the strongest prescription ones when necessary, and my usual antidepressant.

I have terrible IBS too now, it seemed to start at exactly the same time as the other Fibro symptoms. I don't understand how it happened, where it all came from, and why it ebbs and flows........... :cry:
UKFM Newbie
Posts: 6
Joined: Wed Jun 04, 2014 8:13 am

Re: I just don't get it?

Postby froghop65 » Tue Jun 10, 2014 9:48 am

I read the posts on here, and I find myself nodding & saying to myself, welcome to my world. Like you, my symptomscan change from minute to minute or day to day. But I also suffer with peripheral neuropathy and suffer with joint hypermobility syndrome. These other conditions may impact on my fibromyalga. I am suffering, at the moment, with twitches, all over my body, especially my hands & arms. I find it embarrassing as my body will not stay still.
Pauline x
UKFM Newbie
Posts: 5
Joined: Fri May 16, 2014 1:07 am

Re: I just don't get it?

Postby FluppyPuffy » Tue Jun 10, 2014 12:00 pm

The vagueness and unpredictability of the condition is something that has always frustrated me, altho much less so these days :teddy-bear: :teddy-bear: :teddy-bear:

The rate at which things can and do change, and the order, or maybe that should be lack of order, that it can occur still leaves me confuzzled. The past few weeks have been pretty horrendous for me, and have knocked me back considerably further than I have been for a fair while. The usual laws of physics and the universe have gone out of the window tho :facepalm: :facepalm: :facepalm: On nights when I have managed to sleep, I have been so zombified the following day that I've actually checked my meds to make sure something hasn't morphed into Amitriptyline, as how I've been feeling is on a par with how bad I felt when taking Amis.

One the flip side tho, after a night with very little or, more often than not, no sleep at all, whilst I've felt like I've got someone else's body, my head has been somewhat clearer :crazy: :crazy: :crazy: :crazy: That is until the :hit1: :hit1: :hit1: :hit1: :hit1: :hit1: :hit1: hits as they are also back with a vengeance :shock: :shock: :shock:
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.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 6 guests