Getting better from FM ?

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Getting better from FM ?

Postby Iceskatemum » Fri Apr 12, 2013 10:16 pm

Today I went to a Occ health Medical Appointment . From the chat of HR /Welfare and others it seemed that it was a formality I had to go through in order for me to retire from my job on grounds of ill health.

Let's just say it wasn't the simple medical I had been led to believe or was expecting.

The Doctor was very though in his questioning about my degenerative spinal disease , however he was quite dismissive of my FM. Kept blaming the fatigue/pain of FM on the pain meds I take for my bad back , lack or exercise , being overweight etc He seemed to totally dismiss the fact that one of the reasons I couldn't go back to work is the fibro fog, the lack of concetration, short term memory problems , my lack or tolerance of loud noises /background chatter etc. When I challanged him on this, he said he had taken it into consideration but as there was a likely hood I would get better from FM with the proper treatments he didn't think they were a long term obstical in getting back to work.

I couldn't believe my ears , as I have been trawling the web for the last 12 months looking for medical /scientific papers that would give me information on how to beat this illness.
I challanged him on the "getting better" statement and he did say that it was not unusual for folk to improve thier position and be able to get back to work.

This is now the second time that a medical professional has tossed this statement in my direction but I can't seem to find back up information in any of the literature, I've accessed.

Does anyone know of any cases were a person has been dx with FM and has then appeared to improve from a position of having very little activity etc to a position that they appear "cured" and able to resume normal activites

If it is based on info from scientific journals so much the better as I may need to refer to it , should I be unsucessful in my application for IHR.

Many thanks .
ISM
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Re: Getting better from FM ?

Postby denys » Sat Apr 13, 2013 12:13 am

Hi ISM the only time I have ever heard of anyone being 'cured' of FM is when they havent been correctly diagnosed in the first place. There have been cases of a sort of 'remission' mentioned before but most people then seem to get a 're-occurrence' of their symptoms

So I would say you may need an independent report doing by someone who actually knows something about FM sad that people are still having to fight this sort of mindset :-? :-? :-? :-? :-?
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Getting better from FM ?

Postby lrgatrell88 » Sat Apr 13, 2013 8:53 am

My fm did get a lot better last year. I was able to dress myself and do some of the housework etc but not well enough to go back to work because I was still having to sleep most of the day when my son was at school.
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Getting better from FM ?

Postby lrgatrell88 » Sat Apr 13, 2013 8:56 am

Didn't mean to send just that... Not awake yet. Lol. I think some sites can claim to offer u a ' miracle' cure.. My mum has made me try most of them. Bless her. When I saw a fibro specialist the only thing he said to me was ' youve got it for life, you've got to learn to live with it'. Which wasn't helpful at all. X
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Re: Getting better from FM ?

Postby Iceskatemum » Sat Apr 13, 2013 12:20 pm

Thanks folks that's what I thought especially the bit about not being DX correctly. I was so angry I got very emotional I cried.
Came home and cried some more.. I'm still very stressed about it so today my words and speech aren't coming right and I sound like a drunk.

I'm so tired of being made to feel a fraud and not believed.


It has taken me such a long time to get my head around even the thought of leaving work on grounds of ilhealth I,m not sure what to think now.
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Re: Getting better from FM ?

Postby FluppyPuffy » Sat Apr 13, 2013 12:36 pm

At the moment ISM, all you can really do is wait and see what the Occ Health doc actually says in his report. His approach to FM sounds either incredibly naive or he's in a different district of LaaLaaLand to where we all are :crazy: :crazy: :crazy: :crazy: :crazy:

Whilst there are stories across the web of people getting better/being cured, the amount of truth in them is very debatable. There are people who manage to get a good control over things and live decent lives, but it's effects tend to be always lurking around and flare up occasionally, just to remind them it is there and will be with them for the long haul.

I'm like you and keep trawling the web for new bits of info/news on developments for FM to see how things could be progressing, but at the moment, the "getting better" is still very much a fantasy/fairy tale and the best we can hope for at the moment is doing what we are, trying to find that magic cocktail that helps us achieve a little more functionality in the lives we currently live :hugs: :blowkiss: :hugs: :blowkiss: :hugs: :blowkiss: :hugs: :blowkiss:
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Re: Getting better from FM ?

Postby fibro-lu » Sat Apr 13, 2013 4:09 pm

Hi ISM,

sorry to hear about this treadful meeting
I take it you are off sick at the moment?
when it runs out go back to your GP and get another sick note
do this again and again

"invisible" illnesses are not easy diagnosed, nor understood, nor sympethiesed (?) with
how can one find a cure to something which can't be seen or meassured or tested etc

i.e.
a pair of crippled legs can be slapped into someone's face and they see what's going on there
a pair of legs crippled by pain ....(can still be slapped, I know, but that's not the point, thou the thought is tempting)

don't let them stress you out
all the best
Lu
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Re: Getting better from FM ?

Postby Iceskatemum » Sun Apr 14, 2013 12:24 pm

Hi Fibro Lu , with this being an invisable illness it is like you have said as if we are miles behind the starting line of peoples belief systems, thats if they believe us at all to start off with which I'm saddened to say I don't believe this doctor did.

I totally appreciate that there are other illness' out there that will cause your body to degenerate day by day & rob you of your functions and lifestyle until eventually it may be fatal and my sympathies are with those people & thier carers & families . I had to watch my sister nurse her husband for 36 year years as he slowly progressed with MS.

However it doesn't take away from what we have come to know. FM in varying degrees will rob you of your abiity to do things and may eventually for some take away your enjoyment of life. its this vagueness that is the hardest thing for me to cope with .

In answer to your question , yes I'm off sick and have been since May last year , I have a current sick line until the 6 May . If you look at my sick record over the last 5 years I have been off sick more than I have been there , there is only one year in which I had no days off due to ill health and if I'm honest thats 'cause I tended to use my annual leave to cover for me.

My work personnel folk want me out on grounds of Ill health, a previous OHS doctor said that if reasonable adjustment can not be put in place I should be eliglble for IHT and recently I had a welfare visit where she asked how I felt about IHR and the fact that they couldn't get reasonable adjustment that would allow me back to work.

Thats why I guess I niavely took everyone by thier word and that it would be a smooth medical process etc.

I have really gone into a massive flare as I worry about what wil be. HR have already said that in the unlikely event that the Doc will not find me eligible for IHR they will begin dismissal action and eventually sack me on grounds of inefficiency.

Even though Iam trying all sorts of relaxation technigues I am VERY stressed and not sure how to move forward.

However just to say a BIG thanks to everyone for your words of support. I will try and relax more and try & chill about it and try not to preempt what the Doc will have to say about me.........problem is....its such a hard thing to do ........


Thanks again :blowkiss: :blowkiss: :blowkiss:
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Re: Getting better from FM ?

Postby fibro-lu » Sun Apr 14, 2013 4:26 pm

it is hard to relax

think I am about the same position as you
lined up are
- OH visite at home (hopefully the last one)
- meeting with HR, Line manager, union rep and maybe me (depending if I can face that stress, travel etc)

there were a few suggestion made, nothing in writing
had to work hard on me not to let this get to me
at the end those suggestion count for nothing, the most "testing the waters"
it is hard not to dwell on them and to dismiss them out of my head

all the best
Lu
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Re: Getting better from FM ?

Postby lolabolla » Sun Apr 14, 2013 5:50 pm

I'm in the same boat love but mine has gone a little further.

I have been retired on ill health grounds tier 1 and I am currently fighting for tier 2 which is immediate pension, so more beneficial for me.

The occy health doctor that my former company use said that with the right treatment I would get better too :roll:

I too have trawled the web looking for evidence that FMS is curable, no luck so far.

From personal experience please take care, even if the union are involved they still try to pull the wool over your eyes.

My former employers and my union rep have told me a pack of lies to end my employment.

After doing lots of research I have since found out that they were using the old ruling on Ill Health retirement.

So I have now got the union head office involved because I have obviously been given false representation.

Fortunately I have kept every letter and email between my employers, union rep and myself.

I think I may have them running round like headless chickens :chicken-dance: :chicken-dance: :chicken-dance: :chicken-dance: :chicken-dance:

Lola xx
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Re: Getting better from FM ?

Postby whoami » Mon Apr 15, 2013 2:02 am

This fibromyalgia has to be one of the most difficult things for people with or without the illness to understand. I have heard of a few people who have returned to work. They have been able to have some control of their symptoms, either through medication, excercise or other forms of treatment. I hope that some people have been able to return to work, I am sure it would boost their self esteem if nothing else.
[i][b]

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Re: Getting better from FM ?

Postby Pinkprincess205 » Mon Apr 15, 2013 9:30 am

Oh sounds like a not very good time for you at the moment. You do need to relac and stop stressing or you will get much worse. I do believe these people that seem to get 'cured' probably never had fibro in the first place. As there is no test to prove fibro, it cant be proved that they got better. Its a very hard situation. I have had fibro for many years but got much worse when i had acar crash in 2010, got diagnosed in 2011 and i have thoughts of returning to work, when im having a good day, but the next day, i get a kick in the butt and feel terrible when i wake up, and think what a stupid idea it was lol.
Good luck to the people that get 'cured' of fibro and return to work. But as i said, they probably never had it in the beginning.
Vic x
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Re: Getting better from FM ?

Postby Iceskatemum » Mon Apr 15, 2013 9:41 am

Totally get what your saying pinkprincess, I had months of fighting with myself that I really needed to just get back into work . Then I would wake up and realise that getting to the bottom of the garden was about all I could manage .
I am still having great difficulty getting my pain under control and my speech was so bad on Saturday that a friend was practically having a conversation with herself she was filling in so many words for me.

After many discussions with my HR Department we had looked at what if any reasonable adjustments could be made , working part time etc It was only after I had made the final decision again with HR help that I would try and get IHR that I felt a wave a calm come over me. Folk around me noticed that I didn't seem so stresssed .


All that has now gone to the wall as I am back once again worrying what the OHS doc will suggest , in a really bad flare and in a dark place mood wise .
Time will tell , lets hope its not too long and I get a letter with his decision very soon.
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Re: Getting better from FM ?

Postby fibro-lu » Mon Apr 15, 2013 3:08 pm

lolabolla wrote:I'm in the same boat love but mine has gone a little further.

I have been retired on ill health grounds tier 1 and I am currently fighting for tier 2 which is immediate pension, so more beneficial for me.

The occy health doctor that my former company use said that with the right treatment I would get better too :roll:

I too have trawled the web looking for evidence that FMS is curable, no luck so far.

From personal experience please take care, even if the union are involved they still try to pull the wool over your eyes.

My former employers and my union rep have told me a pack of lies to end my employment.

After doing lots of research I have since found out that they were using the old ruling on Ill Health retirement.

So I have now got the union head office involved because I have obviously been given false representation.

Fortunately I have kept every letter and email between my employers, union rep and myself.

I think I may have them running round like headless chickens :chicken-dance: :chicken-dance: :chicken-dance: :chicken-dance: :chicken-dance:

Lola xx



hi Lola,

I thought tier 1 would be the one with immediate penson :?:

http://www.wiltshirepensionfund.org.uk/ ... rement.htm

http://www.rbwm.gov.uk/berks-pension/cu ... rement.htm

I agree both, it's good to have a union rep and at the same time be aware that they won't bite the hand which feeds them
my rep had a "meeting" with HR of which he mailed me after it happened, and that HR mentioned there that they would support IHR and managers wouldn't pressing to continue Long Term Absense Sickness (amongst other stuff) well, nothing in writing except rep's mail of hearsay
I know that this HR lady has no authority at all to say/suggest any of that
I didn't reply, there is no proof of anything but if I reply to my union rep, my answer is in writing

there were times when I mailed and called my rep and he never got back, this was going on for weeks
until I enquired some other reps to find out if mine had left
mine hadn't

the gov is working on a new version (don't know why and what the changes are)
had a look but can't find the draft at the moment
but what it says about the role of a union rep is (amongst other stuff) something like: "makes sure the employee understands what HR is saying"
will add it when I find it

am confused myself but will not let it stress me
I will wait patiently of a WRITTEN letter

all the best
Lu
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Re: Getting better from FM ?

Postby kitten » Mon Apr 15, 2013 4:05 pm

went to see the O/T she had got me a pair of fingerless compression gloves for the O/A in my fingers she then asked how I was generally told her that I was struggling at the moment with the fibro and with sensitivity to a lot of things skin rashes slight touch of my skin especially my neck and was waiting for an a appointment for some physio for muscle spasms and had been since the end of January :waiting: "oh dear it's the new appointment system we have " my replay was tell me about it , they send you a letter for an appointment then the flowing week send you one cancelling it then you get a phone call to ask if you can come in on the first one that they cancelled , obviously not a success :roll:

Then well lets try these gloves while we see if you can tolerate them we have to give them about 20 - 40 minutes , so we have a little chat ,at this stage she then says well fibromyalgia is a new condition (well that's wrong it used to be called Fibrositis ) this is the bit she then goes on to say
THAT IT CAN BURN IT SELF OUT
must have been the expression on my face ,but of course I Am not a GP , by this time this gloves are being to make my wrist feel numb and my little finger have cramp in it " I will have to go and ask my colleague to see if they are suitable for you off she goes comes back with the colleague explanes that sometimes my index finger goes white and that these gloves have made my wrist feel numb and have given me cramp in my little finger and has FM & O/A can she still wear them " her colleague then says well you have carpel tunnel that why there are making your wrist numb they are pressing on the nerves in you wrist , I don't have CP at all :swear1: :yikes: :yikes: as for the gloves no they don't help at all , we assume when we go to see these professional people that they no what they are talking about :crazy: :crazy: ::
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