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Hi all as my title says I am new to the site and also new to Fibromyalgia, at the moment I am not well at all I can just about walk or woddle as I was told by my Mom, I am tired all the time but have found out I can't store vitamin B12 so have injections for this, I ache all over and my skin is tender to touch, my muscles are week, so can't wash my hair/ style it, my husband gets me in and out of the bath, I can't do the things I used to at the moment, does it get any better? The list of pain and problems seems to go on and the doc just say Fibromyalgia. Help xxxx

27 Replies

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  • Hi Becky and welcome to our forum, the very best in my opinion :-)

    Could I possibly point you in the direction of our mother site fibroaction.org where you will find lots and lots of very good information.

    I'm sorry you are struggling with coming to terms with this illness. You ask if it gets any better and I can't give you a definitive answer because each of our experiences are different, but I know many people who "flare" and are in really horrendous pain, but then something changes and life becomes a bit easier for them. There are also many pacing techniques which can make everyday life a little better, but again it is very much a personal thing to each person.

    I hope that you are able to access a pain management team who can help try and get your condition more under control and an understanding GP who is aware of fibromyalgia and all it's complexities.

    Sending positive healing vibes your way :-)

    Foggy x

  • Hi I will look at that site, and I have been referred to pain therapy I have just filled out the form, everything takes time. My Gp is understanding me not knowing all the symptoms of Fibro, she just kept saying that's part of Fibro and I didn't realize how big this thing is. Flare up I think I have just got progressively worse lol.

    Gentle cuddles back

    Becky

  • Hi Becky, sorry you are experiencing so many problems at the moment. I was pretty much the same before attending centre for integrative care in glasgow. They have been fabulous in teaching techniques to help calm the body and the symptoms, providing physio exercises designed to improve stregnth, explaining the cycle of pain and how to interrupt it, and finding the right medication. The right mefication takes quite some time but is the first thing you need to sort, this allows some time gor your body to rest, then you can start pacing yourself and trying very gentle exercise to get some stregnth back. It is a bit like reclaiming your body but it does take time and effort. Ask your gp for teferral to pain clinic as this is a good place to start. Wishing you all the best,

  • Hi Shazzy the doc has put me on Gabapentin 300mg x3 a day that helps with the pins and needles and stiffness, Topiramamte 25mg x4 at night for really bad migraine and I am on citalopram 40mg I have been on these for 4 years now for bad depression, cocodamol 30/500mg for pain. Plus other things I will rattle if u shake me lol.

    I do try and slowly walk my dog in the park she is very good off the lead so no pulling, I get home and have to put my legs up, my house is a mess lol.

    Thanks for listening to me moaning

    Gentle cuddles

    Becky

  • Hello Becky and welcome to the best forum for fibro people.

    I too suffer terribly with my legs, some days they just dont want to walk at all. Ive noticed now my arms are beginning tomache, the sweats, headaches, neck pain you say it ive got it.

    But we are all here to help and listen, advise you wherever we can.

    Gentle hugs

    Lucy

  • Hi Lottie I can't even hold a phone to my ear for very long I hope u don't get like that, this fibro is hell, I'm just the same as u the same pain areas. Thanks for listening

    Gentle cuddles

    Becky

  • it can get a lot better. Sometimes hard to find the right path for you but it is there somewhere. xx

  • Hello my friend how you doing you should of used Rupert if you are who I think you are , it's a learning curve pacing and be kind to yourself is the best advise I can give you ,take thing slowly as little stress as possible ,take a look at the spoon theorie ,put it in the green box at top of page ,it helps explain to others and only doing what really needs to be done by you , laughter helps me ,and if I am right you are always smiling ,when I see you ,I was like you initially over time i got back to something near then I went into denille and know I am back at sq one ,listen to your body ,don't push it. , you also want to click the comunitie button on your next post and not the everyone one , keeps it on site then and members only as it can be excesses by face book etc. now put me out of my misery are you who I think you are :d

  • Not sure text me if I am lol fibro fog if u have told me xx

  • Hi did I fact phone my friend ,I am terrible sorry you must be very confused you are not who I thought you were ,but it is lovely to speak and welcome .I have a friend who is a becky who was born in 1970 and we were discussing this site the other week and she has just gone down with fibro in the last 7 weeks ,she is now trying to registrar here as we speak and has obliviously not used becky1970 :) however she can't find the communitie on the site and it has changed since I joined and I can't find it now , so I shall ask for advise for her in a bit , I hope you find the site as warm and welcoming as I have lots of hugs sorry again for confusion. X

  • Hi Becky 1970 You will get better but flares ups can last from days to months even years were nothing helps or there is marginal relief lasting a very short time. You can try to do gentle very gentle neck stretches and head rolls to reduce the tension in your neck and shoulder area. Do not over exert yourself when you feel better that will only set you back. Don't get stressed, stress makes it a whole lot worst. Avoid getting depressed let your doctor if you are, depression prolongs the flare-up.

    Other than taking it easy and understanding how it works and it works slightly different in each of us. The more you understand the least afraid you will be. you have to take it one hour at a time. Fibro doesn't like schedules :) I have had fibro, CF, RLS For 18 years and it is a hellish nightmare and unforgiving syndrome.

    I have had and done almost everything thing recommended or prescribed and the pain and stiffness and waking up screaming unable to move continues so I take every hour that I am at a low pain level and be thankful, because another Flare up is just lurking around the corner.

    You will probably never be able to do the things you use to and that common, you will have to began to understand that life as you knew it (BF) (before fibro) is unlikely to return, you will more than likely always be in pain with fatigue because of the CF. There is no cure or magic pill and most meds for pain only works for a short time. I hope this helps xxxx lots of gentle gentle hugs.

  • Hi Rosetta, thanks for the info, STRESS I am on 40mg citalopram antidepressants that's the only way I can cope with stress and if more comes my way I truly can't cope with it I just shut myself in the house and go to bed,

    I do try to take my little dog Pippy to the park for a walk, she is very well behaved off the lead so no pulling but that's it.

    The Doc has referred me to pain therapy management but it all takes time to sort out so waiting for an appointment now.

    Gentle cuddles

    Becky

  • I'm glad you are doing better. I know it sucks, I just tried to get out of bed only to discover I can't stand the ligaments and muscles in my groin want allow me to walk and it hurts to even stand but I have my power chair by the bed this is the first time this type on pain has prevented me from walking. It usually my lower back and legs. There is always something my neck and shoulders are on fire and my pain meds. has stop working and my appt. with my pain Dr. is a week away. But I can't let it get to me I have to just know that this flare will pass eventually. I often think what doesn't kill you only makes you stronger. :)

    xxxxxx

  • Sorry u are having a bad day this morning, u don't know what the next day is going to bring do u, I've had a bad night not been able to get comfy.

    Lots of very gentle cuddles

    Xxx

    Becky

  • You got it Becky1970 this uncertainty is one of the main reasons for depression to flare up also. xxx

  • Hi Becky1970

    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. Things can always get better, we all need to have hope for a better and brighter tomorrow. I am so sorry to read that you are suffering so badly with your Fibro and I genuinely hope that you can find the answers that you so desperately desire and deserve.

    It can really help with your Fibro if you have found the right combination of medications, I was wondering what you were taking at this time? Physiotherapy is also a great healer, in that some gentle exercises can help you to be more mobile and feel less pain, do you have a physiotherapist?

    I want to wish you all the best of luck, and I sincerely hope that you can achieve some resolution and relief to your pain.

    All my hopes and dreams for you

    Ken x

  • Hello becky1970. . Your 1 St post sounded like me 4 weeks ago. .I couldn't lift my arms above elbow level.. a walk to the shops would end up me being in bed for a day or 2... Had mobility problems with my back. ..I was diagnosed in July 2014.. Done loads of research about diet and exercise. .came off my tablets and put everyone's advice into motion. ..took up swimming and the gym. ..Ached like mad 1 St few days. . But hey am already used to that. .. I've lost LBS and inches. ..Can raise my hands fully above my head. ..Can last a while day without napping. I also started resistance training only light. ..I can honestly say is working wonders for me at the moment. ..I can't believe doing a lot more us making me feel better. There are lots of support groups out there that offer great advice. . Maybe do some of your own researchand find out if anything can work for you. ..The best bet is swimming. . The low impact on your joints is very good and the feeling of weightlessness even better. .. how your feeling better soon

  • I am going to try the swimming by us in Walsall we have brine baths that are very warm and you float they do hydrotherapy there I have been referred there for pain management just waiting for appointments to come through. Glad that you are feeling good and have found a way of controlling your fibro.

    Becky

  • Thanks. . I'm just waiting on a GP referral for a gym membership. .. Good luck with the swimming and how it helps with your symptoms

  • Thanks and good luck to u too didn't realize about the doctors referal, tell me more please, how does it work.

  • It was the guy at the gym that mentioned it. . As it's a medical condition that requires exercise to help symptoms. I spoke to a nurse at work, she filled a form out and faxed it to who ever. . Just waiting for a reply. . It will cost me £39 for 3 months. .. cheaper than a regular membership. . Worth trying they can only say yay it nay. . I'll let you know if I get accepted

  • That's brilliant. 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. I don't want to go on the meds he suggested because I've been on them for a head traume 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 if is affecting my memory - will it get worse as I get older? Will I go mad? But also, does it 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.

    I think I need to see a proper FMS specialist :-(.

    how do you get the gym referral??

  • Hello ☺ I was also surprised at my diagnosis. . Never heard of fibro before, my rheumatologist gave me a prescription and a leaflet. .. so I've spent hours speaking to other sufferers, I've gained a wealth of info. There are loads of support groups out there. .I found Facebook support groups invaluable. .. Lots of advice and personal stories. .. many of whom are in a cocktail of drugs. . Like yourself I've spent 10yrs+ on painkillers for facial pain and only just came off them, so didn't fancy starting all that again and opted for the diet and exercise route... It seems to be working for me at the moment. I can't believe that 3-4 weeks ago I was experiencing the exact same pains you are. .. The flu aches were the worst. . Constant

  • So sorry sweetheart!!! It only gets worse with age,....plus more symptoms... it's horrible. I'd check on getting see at a pain clinic as it's not like it's going away and if you get a grip on your pain levels it helps somewhat on the fatigue. Not totally but some. Plus it helps to have the pain at least at bearable levels. Hope this helps don't mean to discourage you!!! Hang in there honey, you are tougher than you know!!! xxx Mitzi

  • Hello Becky1970

    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...

    Many people mention being B12 deficient on the community including myself and when levels increase you may find your symptoms improve.

    Please also be aware of you Vitamin D & Magnesium levels as Vitamin D deficiency is very common, although many people don't have symptoms and may remain unaware of the problem. But as possible symptoms include fatigue, muscle pains and muscle weakness, it is easy to see how these could seem to worsen symptoms of Fibromyalgia Syndrome. It can be diagnosed through a simple blood test.

    Low levels of magnesium may occur in people with chronic diarrhoea, conditions that cause poor absorption of nutrients from food, and those on long-term proton pump inhibitors (e.g. lansoprazole, omeprazole, etc). These risk factors are relatively common in peple with Fibro, so magnesium levels should be considered (Lindsey Middlemiss Founder & Chair of FibroAction 2009)

    fibroaction.org/Articles/Be...

    Fibro is not progressive and symptoms can be controlled in some situations with a combined

    approach using medications, relaxation, complementary therapies, CBT, stretching & gentle exercise etc. The complications sometimes arise when people have other conditions which impact on the Fibro.

    My pattern so far seems to be poorly, fairly good health for 3 years or so (not really well but better ish!) and now recently had a virus so I've gone downhill a bit. I won't lie it can be a difficult journey to essentially increase exercise intolerance and get symptoms under control but it can be done in some circumstances.

    Keep Strong

    Emma :)

    FibroAction Adminsitrator

  • Hi Becky,

    I too have fibro / CFS and vit B12 def so I know exactly how you feel. Have you finished the loading doses? how often are you having the injections? (((( hugs ))) poor you, sometimes you just can't be bothered to even think!! Hope you feel better soon

    xxxx

  • Hi I have had the loading doses and two lots of injections now they are every 12 weeks, I also have Anaemia with all this so feeling tired and not getting proper sleep well u know what it's like. It's the aching when ever I try to do any thing simple I don't like, like just washing my hair and styling it, I can't do that any more, I end up brushing it up into a ponytail.

    Can I ask what is CFS?

    Gentle cuddles

    Becky

    Ps what is your name?

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