fibro ignorance !!!!

i dont know about you but i get sick of ignorant ppl that treat you like a hypercondriac , i feel like even some of my family dont understand , i am constantly in pain if its not my back its my legs n arms n at night oh god if there not twitching they lock up in real bad pain n i cant move , im 41 n i cant play with my grandkids n do things like i used to its so frustrating n upsetting, havin to ask for help for everything, and my doctor well wen i tell him tramadol dont work he looks at me like im a junky who wants a strionger fix i just want somethin that does work so i can have a bit of life back x thanks for listenin x

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  • Many of us have been in your situation and many of us still are... When my old GP retired I got transferred to a GP who had me in tears ... I got home came on here in tears and the advice i got was to write to him personally which I did explaining how he had made me feel. When he received it he was on the phone the same day apologising and we now have a great dr patient relationship... Unfortunately I am not one of his easier patients I react so badly to so many meds its hard for him.. I have great night meds but day meds we are still trying to find something to suit so at the moment I am in constant pain to some degree.. My family understand because I had fibro before I met my OH this is my 23rd year with fibro ... If your GP seems unsympathetic can you take someone with you, or write a letter, see another GP at your surgery. Or even find another surgery.. From my personal experience once you make your GP aware of your feelings things improve.

    Please know you are not alone and there are always people about on here to listen and suggest solutions

    VG x

  • It's quite possible that all people with a long-term painful illness feel as we do - not just those of us with fibro. It's like you're a broken toy and no-one wants to play with you any more!

    My friend had severe inflammatory bowel disease, and had several operations. After an initial flurry of get well cards and visitors, almost everyone gave up on him, and his long term girlfriend walked out!

    He's reinvented himself now, which seems the best way to cope - and he's certainly found out who his real friends are. He is still quite poorly and always will be, but he does what he wants now, and doesn't worry about the 'friends' who walked away

    If you have fibro, you probably won't get the flurry of cards, but the rest of it will be the same.

    Your life will change, but you have to make dam' sure it's not for the worse!

    VG's advice about doctors is very good. They are often not sure how to deal with fibro as it has only been acknowledged by the medical community for a few years. They are alarmed at being faced with a medical challenge, and get all flustered and difficult. - poor wee souls!

    Making friends with your doctor by letter is a very good method of managing them - they have time to reflect and come up with an answer - and are usually pretty good after that. If they're not - well, you have to find a better one. Never ever let them make you feel guilty - that's not an option.

    I hope you soon find some effective medication for your pain - most of us do eventually, but it is an uphill struggle, and it's not always the strongest drug that does the trick - everyone is different. If you haven't yet had a referral to a good rheumatologist, make sure you get one soon - they are usually helpful, and you can always join us here for a good moan or even a laugh!

    Moffy x

  • I think this is the problem. Because we don't have a visible disability we can sometimes be classed as hypochondriacs which is awful, I agree. Fortunately I have a really good female doctor who is always willing to listen and find something which should, hopefully, help with my pain. As yet, nothing has. I feel awful going back and to to see the GP, I sometimes feel I'm there under false pretences but she assures me I'm not. But if I had £1 for everyone who asks 'what's fibromyalgia?' I'd be a millionaire!!

  • Have you tried Gabbapentin? Its an anti-epilepsy drug and it blocks the pain signals to the brain. It works for me, i'm still in pain but i'm better than i was. Some days i couldnt get a grip on things my hands felt like they had been trapped in a car door. I still drop items that are heavy, but i'm so much better than i was. xxx

  • Thanks guys im takin all this in I just feel like im always moaning and i get on ppls nerves, I am defo gonna write my doctor a letter xcomment

  • Hi Donna,

    so sorry you are feeling a little down at minute and i am with you all the way!

    i always say am like a 'Voodoo' doll if its not one place its another and we have to get by each day with a smile and no one understands that if we are grumpy its hard work to try and be the playful happy us that we used to be.

    We are seen fit if we can get out of bed and do something like making a cup of Tea!

    I noticed that l am like something that is of no use anymore that toy you once loved but its arm or leg dropped off and so friends move onto to the next best friend because you are unable to do what you did before. @ 40 i was doing the splits and flipping over backwards (no lie) everyone saw me as a party piece and the big laughing machine too and now its gone and i even get treated now like i am old and i am a child at times like i am hard to understand.

    We want to be treated as we were before we just are more fragile and cannot physically do things.

    taking the washing out of washing machine and trying to fold it up can be a chore a very big one if a bad day, but i always focus in my head and say if i lived alone (as i am 43) how on earth would i manage so i force myself to manage a lot of times.

    you often feel like you repeat yourself too when talking to family and friends and then you feel even more hypochondriac ..i just say now... look you can ask how am feeling but dont expect me to say i am great because its just not my days now. i can tell you whats going on and how i coped.

    you take each day as it comes and if you can manage a night out with any one you know that would be more than willing to go then i advise to try it , we may have to suffer the consequences but that once in a blue moon is worth it . 2010 last time i went out , i have been out twice past couple wks for special occasions and i am suffering but worth it and i do have friends i never thought i had i just never realised because i sit at home every single night! too tired and hurting to do anything.

    there is some friends that have gone off scene completely but they have shown true colours and now i will never ever have the time of day for them again and i put so much trust into those friends, i hope they get their pay back with the friends they gone off with because i was TRUE and LOYAL xxxx

    you know who's who even if its only one.

    my hubby and my kids have been a blessing to me. xxx i hope you ahve some one special too

    big huggles and chat anytime chicken xxxxxx everyone is so lovley on here and can lighten up a darkened room when feeling blue too xx

  • Hello Donna,

    In your post you mentioned that you feel your GP is not listening to you when you state you are still having pain experience despite Tramadol.

    I would consider making an appointment with another GP, ask for a second opinion or maybe move surgeries.

    If it helps you can download and print FibroAction Factsheets to take with you to your GP.The factsheets provide information on Fibro, its symptoms and it's treatments..

    fibroaction.org/Pages/How-I...

    Have you ever been referred to pain clinic at all?

    Emma

  • Its even worse when your doctor obviously disbelieves everything you say. I have been refused dla again because my doctor says i can walk independently in the surgery( i walk off the pavement into the surgery and sit down and can manage the few metres to the gps room with difficulty, it leaves me shakey and breathless,which goes unnoticed), get up from a chair( i have to hold on to her desk to stand up,and the chairs in the waiting room are easier to push myself up out of them. I do not have the luxury of high enough chairs at home). This report has been sent to my dla appeal, As far as i can see because of this report i dont stand a hope in hells chance of getting dla. My family are supportive even though its hard for them to understand just how much pain is involved.I have a social worker who is really supportive too( dla have ignored 2 reports from her),so i am lucky there.Im now in a pain clinic after waiting about 5 years,and i had to push to be put on the course, unfortunately ive been unable to go because ive got copd which is really bad at the moment.. Im seriously considering dropping my appeal because i dont think i can put myself through all that misery when the likelyhood of winning is so slim..

    I hope everything goes allright for you

    best wishes....nannyjenno

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