New diagnosis - what do I expect in the future?

I was diagnosed with Fibro two weeks ago and am still coming to terms with it to be honest. I really don't know whether I am coming or going. I saw the rheumatologist and he said yep you have fibro, exercise, loose weight, eat healthily and you need to go on meds. He said he'd write to my Dr. I'm waiting for my copy before I go to the Drs. My diagnosis was so quick I didn't believe it - was it just so obvious or was he just using this as a "get out of jail free card"??

I don't want to go on the meds he suggested because I've been on them for a head trauma before and they made me go a little crazy.

I have upset tummy, stiffness all over in the morning and if I sit for long periods, pains in my muscles and joints like flu, migraines that appear from nowhere to full blown migraines within 5 minutes, "fibro-fog", forgetfulness.

What worries me most is the way this is affecting my memory (I forget things and sometimes can't talk properly) - will it get worse as I get older? Will I go mad? But also, does the condition get worse with time/age ? I just don't know what to expect. A prognosis wasn't given which is the scary thing for me.

If I knew how people were where they were diagnosed and how they are 5/10years later I think it wold help me come to terms with things.

I think I need to see a proper FMS specialist and get a 2nd opinion with help/follow up assistance instead of yes you have fibro, now go away. :-(.

19 Replies

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  • Hi bonsabrost,

    I was diagnosed about six weeks ago after suffering with extreme fatigue and flu like symptoms for around 20years and have during the last couple of years have had pain in most parts of my body.

    I agree with you about not wanting to take the medications....Don't want to become addicted to pain killers and not sure about the long term side effects of the other drugs and I also had a bad experience with anti depressants.

    Nice to meet someone at a similar stage!

  • Hello, Most of us has been through what you are going through. A diagnosis with no info as to what to expect. First all of your symptoms appear to be typical fibro. second a Rhumatologist is about the nearest you get to a specialist, though you could ask your Gp for a second opinion. also your memory and speech problems is something that most of us suffer from. My Hubby and son were joking with me just a few moments ago as to where was the best place for me to keep a key so that I wouldnt lose it or forget where is was. my son recommended that I have my nose peirced and then I could where it on a ring.

    Most people find that pain clinic is a big help and may be a good place to start, Ask your GP about a referal,

    I think that I have had fibro for about 30yrs. on Sat I am going camping for a week I still suffer from pain and cannot walk very far, but I dont think that I have gone mad. :P

    This illness affects us all in different ways and we all need different treatment. It can take time to find what suits you but it is not the end of the world and you have found the best site for help and advice.

    On our mother site there is a lot of information all about fibro to get onto the site the address is..http://www.fibroaction.org take a look around and the you can come back to us and we will do our best to help you in any way that we can.

    We are not doctors but between us we have a lot of experience to share.

    Gentle hugs sue xx

  • Hello, I had my diagnosis 14 or so years ago, if you read the posts on this wonderful forum you will realise one answer does not fit all, we all have our good/ bad days/ weeks. This is a good place to come for a chat we all understand. Do not feel alone with the poor memory either, you are not going mad ,having said that, it can get rather potty here at times. We know when to be serious though. XX

  • Hi Bonsabrost,

    I have had my diagnosis a lot quicker than a lot of people on here I was diagnosed after about 2 or 3 years of symptoms and that was about a year ago. I only see my GP. You are asking questions that I think I asked when I first joined this forum. I was told that some people are worse than others and just because someone else is bad does not mean you will be. I am lucky in that my pains are manageable, and some days are better than others :)

    There are others on here who are more knowledgeable than I am, who will give you information and places to visit. I will welcome you to the best support group you could ask for who also have some fun. I hope you are as well as you can be :)

  • Thanks everyone for welcoming me to the group. It is so nice to get replies to my questions and makes me feel like in not alone.

    I like the idea I'd a pain management clinic. I rang my Dr in the way home today and asked if any of them had an interest in fibro and the receptionist said they were 'all good' -what rubbish! ! Anyway I'm going to book an appointment and take my husband with me. Is like to be referred to guys hospital to their fibro clinic to see drs who specialise in this even if I ends up going private through work. I just need to do this to be sure and to have a plan if action rather than. Yep you have it now go away attitude.

    Once I have a pen of action I'll be Ok. I'm an active person always on the go doing something as I hate to be sat down doing nothing. I get bored but now my body says stop and I have to. This Is mentally strssful for me because I'm not used to not being able to do things and is been more noticeable since the beginning of the year when we did lots of walksand note my hips hurt if I Walk for too long. Not good.

    Thanks for your words of support. I'm sure I'll have lots more questions and is good to know that people will respond :-)

  • Bonsabrost, the one piece of advise I would add as I feel it is of primal importance in Fibro, and that is learn not to react to lives stressors. It takes time and much practice to do this but your body will thank you for it. Stress and worry play havoc on some of our hormones and magnify pain.

    Make your situation a journey of learning and you will start to recognise what works for you.

    Listen to your body.

    Best Wishes, Ray

  • I forgot to leave my fiancee's Birthday card out for him so he would find it this morning. Then I spent 20 minutes trying to find where I had "hidden" it. You aren't alone. I was diagnosed about a year and a half ago but had FM a lot longer. I do have progression which involves other syndromes or symptoms, but then I have long periods without any change.

    Now I need a colonoscopy to check whether I have IBs or something else. I have had migraines occasionally with fairly constant headaches over the last 6 months. But now the last few days these are better. I have to do the housework - fiancee works full time and then some - and usually by midafternoon I am flat on my back and occsionally taking hydrocodone, which works fairly well for me.

    I wish there were something else for me for pain and exhaustion, but I don't want to get into stronger drugs. I can handle the potential for the Vicodin to become addiction. Other drugs for FM have bad interactions with meds that are a priority. I take several OTC supplements which help.

    I just have to deal with it best I can, one day at a time. I am learning not to worry as much about the future; stress increases all my symptoms.

    This forum is for me one of the best medications I have found!

  • I couldn't agree more x

  • Thanks. I work full time in for a software company and I do voluntary work too. No kids yet but these are on the agenda so need to be careful not to over do it. Priorities I think are the order if the day and I must put myself and my health first.

  • Have you been tested for under active thyroid? Have a look on tpauk web site.

  • Hi jeany. I believe do. I need to check what tests they have done when I see my gp next as I'm not sure on all of them. Thanks

  • Bonsabbrost me to just over 2 weeks and it horrible its a lot to take in xx

  • Hi bonsabrost

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum, useful, informative and loads of fun?

    I was diagnosed very quickly myself, and I now take all of the medications that they recommend. I cannot say that they work all of the time but they do work a lot of the time. I want to wish you all the best of luck with finding the answers that you so desperately desire and deserve.

    All my hopes and dreams for you

    Ken x

  • Thank you all and Ken. I feel very happy talking here.

    They want to put me back in amyltriptaline but haven't really explained why. I believe it to be to flo with my sleep because I so tired and with telling the grain I don't have pain. I was in this for similar reasons when I fell down the stairs the years ago and only came if it last year. Didn't like the side effects but my god they helped me sleep :-).

    Have just woken up and pain in my arms and hands today very tired and stiff one again. Time to crack on and try and ignore it. I know I need to be careful though and not over do it. :-(.

    Hope you are all doing Ok today.

  • Hi Bonsabrost,

    I haven't got a diagnosis yet but they have put me on amitriptyline. Doc said it is a painkiller when used in small doses as it works on the nerves. It aids sleep because it is a painkiller (apparently). I also have tramadol which works for bad pain x

  • Hello Bonsabrost,

    Welcome to the FibroAction community!

    Please can I add to all your other comments you've received that we have information in our FAQ section for people who are newly diagnosed.

    Here's the link;

    healthunlocked.com/fibroact...

    I hope this helps

    Emma :)

    FibroAction Adminsitrator

  • Hi, be careful about using your private health care - I did and although great for a quick diagnosis, mine will not fund follow up appts as it is a LTC with no "cure" just management. I've been doing ok with Amitriptyline but now I am finding its not helping me as much as it did so going to see my GP next week to discuss alternative (or supplementary) meds. Sadly the rheumy who diagnosed me does not work on the NHS so may have to be referred to see someone else if the GP can't manage my pain. X

  • Hi, Thanks. I kind a knew this as I've been here before with back pain from years ago (not related) and they paid for the initial consultations and 10 physio sessions then said as it was chronic that's all they'd pay for. So I expect that again this time, but I would check before I commit to any private appointments. :-).

    How long have you been diagnosed? Has it got worse for you?

  • Hello Sweetheart, sorry for your diagnosis. I had Fibro for years and thought I'd go mad before I was finally diagnosed. That was 11 years ago. Yes it gets worse with age...symptoms I once thought non related, guess what they are related. If you get the proper care your life will be different but bearable. I fought the good fight until I was suffering horribly. Finally I went to a pain clinic and now I'm getting by. I'm having issues with my esophagus right now why....it's a big muscle...go figure. If you can get somewhat control on the pain though it helps as your body isn't as stressed. Please try not to stress out over things as you will be better off for it. Stress makes Fibro go into high gear. It's scary at first but you learn to live with it and know your limits as you will have to pace yourself, otherwise you'll pay for it for days. You are lucky in that you have a wonderful support group here. People who know how you feel and have compassion. It's hard for others to understand as we look okay on the outside, so this is a big frustration for us. Hang in there darling and just know we are all here for you when you need us. xxx Mitzi

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