New at this

Ok so I only got diagnosed last week by a rhematologist, so far had two appointments at the doctors, medication and referal for therapy. Fab doctor but sure I'm in denial. Doctor has confirmed I defo have fibro but will take time for me to adjust and pace my self. Pains everywhere especially knees, hands, hips legs arms neck and not to mention my head and behind my ear. How long does it take to adjust and does anybody have any tips for pain relief, docs said unless I take really really strong pain med which I don't want to do as I have two small children there isn't much i can do. Any tips any body??

Thanks x

11 Replies

  • one thing to remember vicky we are here for support for you take care kind regards bigalan

  • My suggestion would be first of all to take some time and read around a variety of the current and past posts on this Forum to see how others are coping /have coped etc.

    One thing I would say is that with 2 small children you are faced with an extra challenge in terms of how to balance your illness needs with their needs. In such a position I would say look to put in place the maximum support you can with household tasks so that the reduced energy you have can be directed to your kids. And even then take as much support with looking after the kids as you can find so that you don't run yourself ragged every day. Your illness affects you and your family and to be fair to everyone lots of adjustments will be needed all round. You need to be able to look after your health needs in order to be able to look after others so don't put yourself last......nobody will benefit in the long run.

    I really hope your pain level eases soon. Take care.

  • Hi Vicky,

    I'm glad you found this site. I've found other people here very friendly and helpful. I was diagnosed in January. It is a bit if a shock at first and I'm only properly coming to grips with it now through therapy that I had to keep asking for. It sounds like your Dr is on the ball, that goes a long way. My children are 17 and 11 so we're out of the stage your at with your wee ones but I second the advice to take as much help as you can.

    I'm at the stage where I'll admit I need to get a cleaner in but I want to have the place tidy first 😃

    Use the search bar on the forum too, there's a wealth of knowledge and experience from fellow Fibro folk.

    A lot of aches pains and odd nuances that I thought were just things I get, I now know are actually symptoms of fibromyalgia.

    Everyone reacts differently to different pain relief so a lot of it is trial and error. I too don't want to feel under too much effects of medication. The first one I was put on didn't suit me then I was put on pregabalin (lyrica) which I felt quite sleepy with at first but after about a week I felt ok to increase it to the recommended dose plus I was given tramadol for times when I find I'm in too much pain. I only take them on very rare occasions.

    I think a lot of people find gentle Aqua exercise helpful if you're loking at alternatives. Some people find acupuncture good. These are only suggestions, might not be for everyone.i go to the rheumatology physiotherapist every few weeks at the moment, occupational therapy and I see a psychologist who is experienced in working with fibro patients. Sorry for ghe long post

  • Hi jonesvicky81

    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 have pasted you a link below to our parent site, Fibromyalgia Action UK which hosts loads of useful Fibro information:

    Fibromyalgia Action UK

    I personally use a TENS Machine to help with excessive pain as I also need to keep awake and with it to look after my wife who has MS, and I find this very useful.

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

    All my hopes and dreams for you


  • Thank you for all your reply, it's nice to know there are people going through the same as I am and also I have somewhere to turn when I need advice / rant or just to talk.

    Like I said I'm knew to this and haven't really got my head around it all but with help from this site and doctors I'm sure I will. Doctors can't stress enough about learning to pace and it seems that is the correct advice from your posts.

    Thank you all again. I shall do some reading up.

    Best wishes to you all x

  • Hi

    I've had Fibro over 30 years.

    My best advice, at the moment, would be for you to take some time out to adjust to your diagnosis.

    Even when sometimes we already know in our heads and hearts what we have it can stil take time to get used to all of it.

    If you can take some time to read back on previous posts, research Fibromyalgia and generally learn as much as you can about this horrid conditon that will help you in the long run.

    If you have any specific questions post them here. We all do our best to support and look after each other here. I've been a member since 2012 and have learned more about my condition here than I have from my GP.

    Take it easy and be kind to yourself.

    Hugs Lu xx

  • Hi

    Thank you for your reply.

    I will certainly look through past posts, I want to learn more as the saying goes for armed is for warned.

    I think if I can get my head around it I will do much better.

    Best wishes x

  • Hi again

    If there's anything specific you want to learn about type a keyword into the search bar at the very top right of your screen. This will then bring up posts on what you want to know more about. I hope that helps.

    If I can help with anything else please feel free to ask.

    The main thing to remember with Fibro is that it affects everyone extremely differently. What works for me may do nothing for you.

    It can take years to get to the right way for you personally to deal with it.

    There are various things that you can get your GP to refer you for. For example Pain Management Clinic, Physiotherapy, Hydrotherapy, CBT (Cognitive Behavioural Therapy). The first and last things on that list may be the ones for you.

    It is worth asking for referrals now, as the wait can be up to six months for an appointment dependant upon where you live.

    Not all pain medications knock you out, so please don't count them out completely. I've raised 2 children with Fibro. I still am they're 15 & 18.

    If you want to reply to me click Submit reply in the red box at the bottom of my reply. That way I get a notification that you've messaged me. Otherwise I won't know there's a message for me.

    I'm around most of the time and am always happy to help even with the little things.

    Hugs Lu xx

  • Thank you so much, you have been so helpful.

    I have a referral for CBT so that's one off the list.

    I really like the sound of hydro therepy so I will ask for that.

    My children are 2 & 5 so still at the very dependant stage and sometimes that's a struggle. They want to do things all the time which I completely understand but I'm finding myself telling them not today kids quite often so feel quite sorry for them. Having said that we are going tenpin bowling on Monday which we're all looking forward too.

    Once again thank you for your support.

    Best wishes vicky x

  • A note of caution about being able to get access to hydrotherapy. ....access to it on the NHS is patchy (or non existent where I live). From posts I've read at best people got a course of 6 sessions and then that was it.....not much use as a long term palliative treatment then! Since Fibro is a long term illness I'd recommend instead that you put your energies into seeking out long term measures/strategies to help ease it's pains, fatigue etc. After all that's all anyone of us can do......any cure for it remains stubbornly unknown! Mind you if you can get hydrotherapy then go for it and enjoy!

    Hope you all enjoy your bowling on Monday and that the after effects of it for you aren't too bad. All best.

  • Sorry I didn't read you post earlier. Unfortunately my concentration has evaporated into Fibro fog. I will try to get back to you tomorrow. It is always another day 😺

You may also like...