First time

I have just found out that I have fibro, and I'm not sure if I should be happy or sad, I'm very confused about it all. I have had test and other possible diagnosis since 2006. But now I've been told this is what I have. I have a great family that are supportive but I just want to sit in a corner and cry. I try and do everything I have always don't but just taking my daughter to dance and picking her up makes me tired. I ache from head to toe all the time. And things have got worse over the years. My consultant has said I need to lose weight and do more things and everything will be fine. My husband is very positive that this will happen but I have no positive feeling that things will get better. Does it halt at a stage or does it get worse? Will I end up not being able to do anything? Scare at this point in time can anyone give me any idea on any of my questions. Please need to know whether its good or bad can't just keep wondering need to know so I can start planning. Thank you in advance,

26 Replies

  • Hugs can you get physio or help with weight management in your area? i found high dose vitamin d3 helped with the pain.

  • Thanks trekster 22. I go to gp next week so hopefully she will arrange physio abd things for me. Been on vit d3 for a while but cant seem to improve very low levels but will keep going. Hugs to u too. X

  • What dose of D3 /and calcium are you taking?

  • 50,000 iu had two 8 wk courses and still no vitd in bloods.

  • Reply box now coming up.

    What type of vitamin D did you take?

    Was it a daily or weekly dose?

    Was it in tablet,capsule or liquid form?Did you take calcium as well?

    If you go to the Vitamin D Council website they will send you a newsletter.

  • Hi

    I can't reply to your last posting for some reason the reply box does not come up on screen.

    I just wondered what dose of vitamin D you were taking,how regularly did you take it and was it in tablet, liquid form?

    We need to take calcium at the same time .

  • Hello nissanjean. Sorry but I did reply but anyway its nice of you to tell me about the news letter. I was taking 50.000iu in tablet once weekly. Still nothing in my bloods. Go drs this week find out what next.

  • WHAT DOSE OF VIT d did you take? Hope you do not mind my asking?

  • Hi mammabassey

    My own personal opinion of having Fibromyalgia (had it for 30 odd years) is that you can't actually plan anything. Well, you can of course plan things, but whether or not you will be up to do them at the given time is another matter.

    Things like being referred to a Pain Management programme might help and as trekster says, physio.

    The unfortunate thing about Fibro is that it affects all of us so differently. Something that might be of a great help to me may not help you at all. It's all a matter of trial and error.

    Ask any questions you want to. There's always someone around to give a hug or an idea.

    Sometimes a good cry does help.

    Feel free to PM me if you'd like to chat.

    At least now you know you have Fibromyalgia you can start to figure out a way of life that suits you.

    Warmesr wishes and a hug

    Lu xx

  • Warmest * even! Flipping spell check 😊

  • Thanks bluemermaid1, im sure I will be pm you at some stage. Ive had both pain clinic and physio over the last two yrs and tablets working.ok but physio no help so I take it im just going to have to carry on the day to day way I have been but with more positive mood . X

  • Hi. I too had Physio but didn't feel it helped either. Pacing yourself and acceptance of our condition appear to be key to coping but I have to admit I don't feel I've mastered either 😁.

    My pain levels are so high (even with my meds) there are many days where I have to cancel plans.

    Obviously I don't have all the answers. If I did I would have cured everyone with Fibro and CFS by now.

    But sometimes just being able to chat to likeminded people who aren't going to tell you "but you look so well" can help.

    Being positive is definitely the way forward but not always easy to maintain when you are in pain and fatigued.

    Message me anytime

    Hugs xx

  • Sometimes we need to cry as part of a grieving process and being told you have Fibro is something to grieve is news of any chronic illness. The hardest part for me was acceptance. I couldn't give in without a fight but it was pointless - I only made life harder for myself. ...Fibro is not responsive to pushing through except by showing you that is not the way by causing a bad crash/relapse necessitating bed rest and inactivity. And boy could that make me feel miserable! Acceptance does not mean hopelessness. means acknowledging that you need to make lifestyle changes and manage your daily activity to a level that does not tip you over into a "crash"...... endless trial and error but it's worth it to be able to feel ok more often over the long term. Life will be different but be kind and gentle to yourself every day. Best wishes.

  • Thanks stumpedok. Im going to try the positive route looks like its the only way forward. Oh and a good cry. X

  • Well said!!! It's taken me a while but what you've shared has resonated with my situation too!!

    I've found CBT very helpful in exploring the acceptance factor & loss of many things which I'd been avoiding acceptance of - my late Father, career/ vocation, the 'well' ME, etc etcetera

    I'm also trying Vit D & a very pure Forever Living Aloe Vera. & MSM drink daily. It's v expensive but if it helps I'll find the money somehow to buy regularly.

    I'm hopeful for the future now for the first time in years, starting to socialise again in small doses & train friends in how to support me!! Easier said than done!

    Happy Ffffffriday,

    Enjoy the weekend.


  • Hi countess...glad I made some sense....good to know i do sometimes!! One thing I'm learning about "grieving" is that it isn't a one off process with a clear finish point....It will subside and then hit me for six again...something will trigger it and I feel my losses again until I acknowledge them afresh, cry a bit then pick myself up again and carry on. Loss is part of the human experience...just some will have to face more than others. The human spirit is incredibly strong.

    Good luck on your individual journey.

  • Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link to our mother site FibroAction which hosts loads of useful Fibro information:

    Sadly there are no guarantees that your Fibro will or will not play up on any given day and the best advice that i can give you is to pace yourself in everything that you do.

    I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you


  • Thank you theauthor and I will look on the other site. But going to look after myself and get positive.

  • I was diagnosed in November last year but have probably had Fibro for years looking back. I'm now having CBT which seems very helpful in the grieving phase & coming to terms with what the 'new me' is capable of doing & how best to manage 'it' rather than ' it' manage me!!

    Pacing is definitely the key. I'm an ex PE teacher & very hyperactive usually but now having to listen to my body & dealing with myself more holistically. It's a tough process & losing my job through all this has been a complete nightmare but now I'm starting to return to the more positive me, things are improving albeit not at the rate I'd like!

    Just do what you can & hey ho, the rest will be left for tomorrow!

    Bonne chance. I hope you find the balance you need to enjoy your life once again. Take care.

  • Thanks countess. Sorry to hear you may loss your job. I lost mind two years ago so I had a bit of time to come to terms with not working and it has made me a lot happier not to have to run around to the clock so much but still hard to get up and not have the energy to do anything. Very frustrating. Thanks again for introducing yourself. Im going to just relax and takecare of myself from now on. X

  • Hi countess.

    Like you I believe pacing has a key role to play as does allowing yourself to grieve for the healthy you you have lost. I have referenced a Bruce Campbell in my recent Post about the role of self management in Fibro -he too talks abouts allowing ourselves to grieve as part of the ongoing process of adapting to a new reality and then making the most of our new 'different' lives. Would be interested to know what you think if you decide to have a look at his free stuff on line?

  • Many thanks, I'll take a look at it in the next few days & let you know. Still struggling with this site -my foggy head not the sure itself!!

    I'm also trying an Aloe Vera gel drink with MSN which I've heard gr8 things about. It's by a company called Forever Living - not cheap but if it helps it's worth it. Think they do a money back guarantee for 2 months which is worth knowing

    I already use their Aloe Heat lotion very successfully, have done for yrs though the massage is far more gentle than in my 'previous life'!!!

    I'm starting to enjoy the simpler things in life & though I miss my crazy mad life, I'm now accepting that this is the next phase & semi retirement is fun! Cheaper flights away, spontaneous trips, lunches - if/when I'm up to it OR just a lovely cup of tea sitting feeding the ducks & swans at the bottom if my garden. I'm very blessed with my environment overlooking the lagoon & sea so why beat myself up?!! Enjoy the bank hols to you all & big gentle hugs!

  • Hi Countess

    You made me laugh -'semi retirement' indeed! Agree an inspiring pleasant environment means a lot - are we talking UK or elsewhere?

    Re Aloe/Forever I went to a promotional evening a while ago - the drink tastes disgusting I thought and I am just too big a sceptic about 'wonder' foods /supplements to be convinced but be interested to hear your verdict after drinking it for say a month or so? And it is pricey stuff.

    Look after yourself as well as the ducks!

  • Hi

    I have fibromyalgia alongside other ailments. ..doc said that I should loose weight too... but one of most common side effects of lyrica tablets is weight gain and he wants to increase my dosage again ....?

    Does any doc or specialist exist ? Please let me know lol

  • Thanks. I'll try and find one. I could do with just a good drs that dosnt tell me to take more excersice I already walk once a day when possible and swim and nothing. But. If I find a amazing specialist. I'll let you know. Hugs

  • When did u realise that you had the condition, I'm 47 and probably had it for years but put it down to weather. It's really embarrassing at times because people assume I am a heavy drinker. And I haven't had a drink for 3 years. Any advice on medication I could take. Ld31.

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