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The UKFibromyalgia Forums • View topic - Hi everyone im clare i have Fibromyalgia



Hi everyone im clare i have Fibromyalgia

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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Hi everyone im clare i have Fibromyalgia

Postby clareabell » Mon Aug 30, 2010 9:58 pm

Hi everyone im clare and after 8 years of pain and other symptoms ive been diagnosed with Fibromyalgia and feel so alone i should feel relived but i know this will never go away and ive dealt with it on my own for so long im scared to accept hellp , im waiting for hydro therapy and cognative therapy and im very nervous about it . I was put on Gabapentine but i could not handle it and its caused me awfull epigastric pain ! Im so tierd of feeling pain and stiff the tramadol does not work , I talk to people close but all i see is blank faces with no response and it really hurt's .
Any advice would be good
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Re: Hi everyone im clare i have Fibromyalgia

Postby denys » Mon Aug 30, 2010 11:18 pm

Hi Clare and :welcome: to the forum :wave: dont worry we have all been where you are now but you've found the forum and we all understand what you are going through :hugs: go for all the therapies offerred as you never know which might actually work for you. Thats one of the main things about this condition, it's unique to you, what works for one will not necessarily work for another.

The pain you feel will not exactly match the next persons but the fact that you are in pain is the same. Please look around the site and have a read, you may find some answers there and if not just ask and someone will try to help sending you some :hugs: :hugs: :flowers: and [chocolate] :wave:
Denys

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Re: Hi everyone im clare i have Fibromyalgia

Postby loubie » Mon Aug 30, 2010 11:30 pm

hi :welcome: :welcome:
we all no the alone feeling very well :(
but you have us all on here now :hugs:
its our own personal little world on here, away from friends and family that cannot fully understand
so just join in with the rest of us nutters :tongueout: :lol: :lol: :lol:
loubie x :wave:
loubie xx

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Re: Hi everyone im clare i have Fibromyalgia

Postby iancb » Tue Aug 31, 2010 10:26 am

Hi

I am new to the forum myself and very recently diagnosed although, like you, have had pain and other symptoms for many years. Perhaps you should book an appointment with your GP. Following my diagnosis I asked the consultant at the pain clinic to write to my GP explaining things and to change my medication. I take tramadol and pregabilin which both knock me out for a few hours but don't give me pain relief.

I don't know if you attend a chronic pain unit or similar at your local hospital - perhaps you do given the many years you have suffered, but maybe you can arrange an appointment with them or get a referral from the GP to re-evaluate your medication and look at other treatment options.

I really hope you can work things forward and get your medics to work with you - I am currently trying to do just that and have booked with my GP for tomorrow - which is the first time I will have spoken with him since diagnosis. I try to be positive and confident with medics as I find this gets results. Tell them how you feel and what the pain is doing to you.

The different types of pain do impact on life as you will know. Words don't take it away but talking with others helps I find. I really found that a pain management programme that I attended brought me together with others in the same boat and really lifted my spirits. I hope the forum will help as well - that's why I am here. You know, it is a real b**g*r sometimes and some people don't really understand how you feel as it is not visible. There seems to be loads of nice people on this forum and my own spirit has been lifted knowing others understand.

By the way, I treat myself sometimes (within my meagre budget) and occasionally eat the wrong foods - i have always liked cakes [chocolate] :D and wristwatches?? ( I am a little daft sorry). I blame weight gain on the tramadol - that's my excuse.

Regards and best wishes
Ian
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Re: Hi everyone im clare i have Fibromyalgia

Postby clareabell » Fri Sep 03, 2010 9:59 am

Thank you for your encouragement and kind words , Ian that's good advice im just waiting to see my G.P again i see him quite often i have all the symptoms with this fibromyalgia , Chest pain , Spasms , Migraine , low bone density , Fatigue etc so i have to see him often to manage my symptoms with my specialist maigraine nurse so i do have suport there , But i think ive missed the big picture im not using the suport im given to the full extent and i think i need to be a bit more vocal and come out of my shell a bit :) Things will not get better unless i push forward . Your post made me relise that Thank you Ian ! Im going to push for the pain clinic and Ive had some Acupunture which as been really good and as had posative effects stright away so im carrying on with that and im investing in a Memory foam mattress so ive stepped on the right path . This forum as learnt me so mutch from reading posts Thank's guy's
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Re: Hi everyone im clare i have Fibromyalgia

Postby iancb » Fri Sep 03, 2010 11:24 am

Hi

I went to see the GP and the consultant had written to him. Oddly enough I received her letter on the same day after the GP appointment as I get them to cc me into correspondence anyway. They should as a matter of form. Anyway, the consultant at the pain clinic was great. she told the GP her diagnosis and what medications she had agreed with me. he followed orders so to speak and prescribed them. he also talked them through with me. the was the first time he had received the diagnosis and also informed me that i was covered by the disability discrimination act at work. i had mentioned my employers had been a touch difficult. So, i will now be referred to a ruematologist (forgive the spelling) and hydrotherapy. my employer can also see the letter and hopefully assist as well with other treatments and work assistance. So the pain clinic at the hospital have been great really and the positive outcomes really help me with managing things. I also talked with the GP about claiming DLA. Lots can come from leading on your own situation - your the boss of them not the other way around as its your body and your life not theirs. As an expert in another field myself, i know that i am not always right or that there may be other answers better than my own. the same is true with medics - they don't know everything or always the right way to go. so they need your input to help guide them to the right answers (if they exist). Don't mask your symptoms. Write them down and tell the GP if that helps. FM has so many symptoms and sometimes you can forget that something happened. I have forgotten many symptoms as the pain is global. Crikey, i have had IBS for years and even had a colonscopy (bloody painful and worrying). Little did i know that it is one of the symptoms of FM. Now i know. had i have known then, i wouldn't have gone through that horror. It was funny though telling friends about it. I would recommend sharing your problems with those close to you - educating really - it can be quite amusing sometimes. I did say i was daft. Anyway, I have written loads and you sound v - positive so my very best wishes.

Ian
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Re: Hi everyone im clare i have Fibromyalgia

Postby clareabell » Sat Sep 11, 2010 5:30 pm

Hi there Ian
Thank's for the reply and good advice ! Your right i am a positive person i think that's how ive managed to cope so long and been in the nursing profession as hellped me understand to a big extent But it's a bit diffrent when your on the reciving end though , Ive had one of my worse months ever and really got to my limit with pain etc but i went back to doctors and im on pregabalin 50 mg & sertraline 50mg antideppressant to hellp me along a bit as i feel ive burnt out emotionally and physically . Ive learnt that fibro causes low serotonin and ive allways wounderd why i dip high and low in mood i was on antideppressants a few years ago and i put so mutch weight on with it and could not understand why i was depressed i have a lovely life this fibro aside , But now i relize why and its not a bad thing to be on the tabletts and i need to see it as a long term management in elevating the symptoms of the fibro ! I think im starting to get my head around things and understand this fibro a bit more ! The pregabalin is starting to work allready my pain is more bearable , I really can not remember my last pain & symptom free day ! Im just keeping my fingers crossed i get sorted a bit for my wedding in 8 wks time and im off work at the moment whilst i get used to the painkillers so ive got some rest time i have to go and see NHS Ocupational Health Doctor , Which is a bit uneasing to say the least i do worry about how long i can carry on doing my job , dropping things, hard to write concentration , pain fatigue etc i just hope i level out a bit and find a level of coping again and gain some controle back as i have felt out of controle for sutch a long time now and i want some controle back :0) How long have you had fibromyalgia Ian im a bit confused about the ME side is it part of it or isnt it ??? There seems to be so mutch debate on it ....
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Re: Hi everyone im clare i have Fibromyalgia

Postby iancb » Sun Sep 12, 2010 8:03 pm

Hi Clare

Well, I have had pain for years but they only diagnosed FM recently. It was probably the most frustrating thing of all waiting until someone had the understanding to actually diagnose it. I had gone through all the usual stuff - physio, mri's pain management programmes etc. I think my symptoms started in my teens - (long time ago as I am now comfortably middle aged). Vanity prevents me telling you that I am 45 years old. Doh.. I started getting real problems in my teens and was called lazy etc and simply ignored by the medics. Often told I would be alright. The fatigue side of things is simply the worst aspect to me. Pain can be managed to an extent but alas it is part of life for fm sufferers. A hidden problem only really understood by others with FM I think. Exhausting some times I am afraid. Sleep doesn't do much good as it is not quality sleep. What can I suggest. Some nice fresh air. Plenty of rest and gentle exercise. Get in a car, go somewhere nice, take a picnic, do not over do it just take your time and pace what you do. Take things at your speed.

In many respects you are in control. I forget things but not to a worrying extent. I mange my work but its not easy. Some days it is hard to actually get up. I am usually tired before i start but find that once up, i can get going. i force myself really but it is good for me. You sound like you have your life ahead of you and your wedding is a great opportunity for you to have a wonderful day. Can i suggest that you really have a relaxing few day before the big day. Hydrotherapy - spa, reflexology are all very relaxing. Pamper yourself. Go with a friend. I would suggest staying off the booze. Don't get me wrong, i love a glass of wine, and a cold cider, but before your big day, get plenty of relaxation in and a plenty of nice gentle exercise. No stress. Avoid those who make you feel stressed. EG, i never answer a phone which may sound odd but it means that i am not available at just the drop of a hat. We worry too much about being accessible so give yourself the opportunity to have time for yourself. Your time is essential. Peace and quiet some tranquillity. I know this sounds a bit hippy but I really think personal time is essential to well-being.

I figure it this way - your employer will go through their processes and the occupational health really depend on what you say to them when they compile their report. think carefully about what you wish to say. See what reasonable adjustments can be made. What about a reduction in hours worked for example? Or, if you can't afford that, what about adjusting when you work - if you are struggling to get up, perhaps and adjustment to your start time. Don't feel intimidated - be reasonable and be discursive. I, like you, take medication - a bit more alas but I am trying to cut it down. So, give them medicine a chance. If they work - great - if not speak with the medics about alternatives.

I am not too familiar the ME debate but what i do know is that the fatigue i suffer could easily fall within that classification. I think FM pretty much incorporates ME. When you think about it, if a person suffered ME alone without the pain, what must it be like for FM sufferers where ME is simply one of the symptoms? Chronic fatigue is awful as many will tell you on this site and you will know. I have simply collapsed at my desk before at work and knew that was not a good sign. If i am tired now, i either rest or get up and stretch a bit. Each to their own when handling this but I believe ME is simply one of the symptoms of FM. Others may disagree but many of the nay sayers don't have FM and can talk without experiencing daily chronic pain. What must it be like to have a life without pain? Wonderful and because it is, it is very easy to talk about other people's problems without any real understanding. Let them talk, you know more than they ever will. What do you think?

So, have a fabulous and beautiful wedding day and my very best wishes for your future.

Regards
Ian
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Re: Hi everyone im clare i have Fibromyalgia

Postby shazq » Tue Sep 14, 2010 6:15 pm

:welcome: :wave:
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Re: Hi everyone im clare i have Fibromyalgia

Postby chuckles » Tue Sep 14, 2010 11:24 pm

hello :wave: and :welcome:
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