I would appreciate advice! Diagnosed with Fibromyalgia and always exhausted. Energy boost ideas?

Posted , 7 users are following.

I know you all will be able to relate to the on going feelings of utter exhaustion. Has anyone found any supplements that provide an energy boost to keep you going through the day. I really would appreciate your advice on what works. I've taken caffeine tablets to keep me going through the day but even these don't work now. I just want to feel normal and have some energy after work so I can try and exercise as my weight is also getting me down now. By the time I get in from work I am burned out and I am an empty shell. Thanks in advance xxx

1 like, 25 replies

25 Replies

  • Posted

    Have heaps of empathy for you Sam. Been there done that and starred in the mini series. You could try CoQ10 which you can buy in the supermarket where they range the vitamins and mineral supplements. It coenzyme Q10 and it aids the amount of oxygen absobtion in the mitochondria. Just getting enough oxygen pumping through your heart is a major help. Plus I read the other day of a substance called Serranol but I haven't tried it yet so can't vouch for it. Google it and if nothing comes up, please message me and I'll send a link. Don't have it to hand right now but I did post it in a fibro discussion group yesterday. BTW, when I first started suffering from fibro I was lucky enough to have a fantastic doctor who left no stone unturned getting to a diagnosis. She tested my blood for everything and discovered by chance that I also had haemochromotosis which also accounts for the debilitating fatigue. Have you had a haemochromatosis test? 
  • Posted

    Oh and another suggestion, eat a banana or two a day! Seriously. I've just reminded myself I should be doing the same. My fibro symtoms come and go and when I get a new attack, I sometimes forget about the simple things. It doesn't matter if it's placebo, if it works why complain?
  • Posted

    Hi Sam,

                   Sorry to hear about your new diagnosis. My mum is a fibromyalgia sufferer and I have seen the struggles she has had to face throughout. But remember you are not an empty shell, you are still the person you was before, the only difference is that you now need to find your ways of adapting your lifestyle and make you able to continue that life you already have. It is also important to remember that you have been diagnosed with an illness, you cannot expect the same from yourself as you did before. Allow time for rest and recuperation so that you can do what you do manage to get done, productively. Spread things out over a longer time scale and don't be hard on yourself for not meeting targets if you cannot physically do it. It is a new lifestyle that you need to adapt to, but YOU have fibromyalgia, fibromyalgia doesn't have you smile.

    Aside from this I am a new awareness and fundraiser and have a new twitter and facebook account, and a brand new website on its way. On my awareness website I hope to use patient stories to show he public the reality of fibromyalgia. I already have a few, but It would be brilliant if you would be happy for me to use your diagnosis story.

    I will hope to hear back from you soon,

    best wishes,

    Shannon.

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  • Posted

    i agree with hazzamcbazza23; making sure you get thorough blood work is important;It is good you have stopped the caffeine; it is no good for those with fibro; i also have started drinking a super high quality  whey protein vitamin enzyme drink made with stevia, not splenda and it has seemed to help; i was low in vitamin D; I am on disability though and honestly, i cannot even imagine at this point trying to put in an 8 hr day for 5 days in a row; alot of stress will do me in no matter what i eat.or drink or meds..I would be like you; totally lifeless and in pain after each shift; 
  • Posted

    Hi, I find when I don't eat bread I have more energy. When I do eat it, it maakes me incredibly lethargic. I am also taking hemp seed oil stirred into a glass of milk or in my yoghurt. Some days are much worse than others though and I cant work now. Check for anaemia too, cos they found I was anaemic and I went on iron tablets. I have a lot of days when I just cant get out of bed and practically crawl to the loo. Luckily I have my children and partner around me to bring me drinks, but I really have to force myself out of bed sometimes to go anywhere. I do wish someone could find a cure, although people have claimed that pure hemp oil has cured them. Difficult to get hold of and very expensive though, thats why I have the hemp seed oil. I keep forgetting to take it even though I make sure my dog has it every day, she has cancer and the vet was sure she wouldnt be with us by now but she seems grea at the moment and her lump has disappeared! I also take b6 as I am not sure whether some of my symptoms are due to menopause but that seems to help a bit too, oh and caprylic acid which I feel has been helping also. I have had this thing for 22 years and this is the first time in a long time I have been bed bound for so long so I would encourage you to keep going as much as you can cos when it gets a hold on you like this its very difficult to shake. I used to find saunas helped too. Take care x
    • Posted

      so far iv never been bed bound ,thank god , maybe its because up to just recently [since starting my rhemotoid oil rubs] the pain woke me several times a night , spending half the night in a recliner,and half in bed and still be woken with pain at no later then 7am.

      now i go to bed about 12am and get up about 8 to 9 , only waking up for the loo. thats annoying as its about 4times a night,

      but you cant have everything,

      have you tried HEMP milk maybe it would be a cheaper way of getting the vitiamins, then the oil, my friend has a mug at lunch time i am thinking of trying it , i know sainsburys sale it not sure about the other stores.

      saunas kill me makes me a lot worse ,but the hydro pool for me is brilliant i just cant get to mine.  i have acupunture and in chinnesse medincine i am what they call a damp type, ,iv always suffered with catterah, sinus, achey joints, and very sensistive to damp cold weather and like this summer damp hot weather. so that would make sense that saunas make me feel worse,

    • Posted

      I havent seen hemp milk but the oil is relatively cheap, the hemp seed oil, that is. I pay £15.00 for a litre and you take about ten mil a day, so lasta ages
  • Posted

    hi forgot to mention q10 thats important one for everyone really after 30
  • Posted

    Thanks everyone for your advice. I too have very low vit d levels and have been on tablets from the GP now for a couple of years. The oxygen drops are they available in the UK? I have mainly slept today as my partner is away but I now feel that I have wasted a precious day off and feel annoyed at myself. I'm really thankful for all of your support. People tend to not really understand and one person told me I had shirkers syndrome which upset me. Xxx big hugs everyone xxx
    • Posted

      I am so sorry someone said that to you! That is awful, just awful. It gets me so mad when people dont believe how much you are suffering. I have found that only now, when I have my stick, do people actually believe that I have an illness! The only other visible thing is the nodules on my fingers but people dont notice them either. I wish people who think that about us would feel our pain just for a day so that they know what we are going through day after day! X
    • Posted

      i am not usaly that cruel ,but i agree 100percent the times iv said

      i wish they, other people could just have my pain and fatigue for a week

      they soon change there mind ,iv got a handel on the pain for the moment but its still there lingering in the back ground, but the fatigue is a nightmare ,

      its so unfair really cruel illness not only are we all suffering but most people dont beleive us , and say we are swinging the lead.its so hurtful i had so many plans for my 40 and 50s to do stuff i couldnt when i was bringing up my kids ,then just when i think its my time ,this hits me , so unfair.and not something i or anyone suffering from this would want.

       

  • Posted

    sam u cant help falling asleep theres nothing you can do about it its not your fault

    your not making the right chemicles in your brain , iv fallen asleep in the shower and standing up only for a second or two but theres no control ,

    iv also found that if i get out and about in the fresh air i fill alot a better

    but when i come back in and sit down i am asleep in minutes same after meals as soon as i sit down i am a sleep . regards tina

  • Posted

    Yes Sam, Tina's suggestion is a great one of trying to get out in the fresh air if you can summon up the energy. Especially on those awful days when you feel bad and very depressed about it all. It works for me and I hope it could brighten you up for a while. As for those people who doubt you, try and feel pity for them instead of hurt. They're just STUPID. Fibromyalgia isn't visible and neither is stupidity until idiots open their mouth!!! 
    • Posted

      your so right, maybe a could reply would be , you cant see stupidty either otherwise i wouldnt be talking to you.
  • Posted

    Hi Sam,

    I was diagnosed last year, after being told 18months earlier that I should go away and get used to the idea that I was just going to be in pain for the rest of my life. That was by a rheumatologist in the UK!  I was in bits coming out of there. However, I'm not fobbed off that easily and persevered and finally got a diagnosis. I too suffer with fatigue, I feel your frustration. I find bananas seem to help and I was low in vitamin D, I have monthly meds for that now and bloods to be done in September.to keep a check on my levels. Earlier in the year my folate was low so I had a course. I am not able to work as I suffer with headaches/migraines on a daily basis. I have had two opinions, one diagnosed cervical spondylosis with migrainous headache and another occipital neuralgia, so far no solution has been offered to me for them. I think that the most important thing is to reduce stress levels as when stressed the pain, fatigue and brain-fog descend. I tend to ask myself 'is it a matter of life or death, what harm can come' and if the answer is no and none then I choose not to stress, it's still a work in practice. I think humour is important as I always feel more lively after a good laugh. 

    I have recently completed a pain management programme, it was demanding, but I have learned that if I can do nothing else in the day that it's vitally important to stretch and keep the ligaments and tendons as healthy as possible. Hydrotherapy was also excellent and I found that after this I did feel more awake and alert. I too have gained weight as I am not able to do what I used to and make egg on legs jokes about me in my recently purchased swim-dress. However, this egg's for excercise however reluctant I feel I know that it helps to release natural endorphins which will help keep the pain levels down and i'm sure help with the fatigue too.

    I hope you find out what works for you and that you are able to cope better with your Fibro, It is better to learn to live with it than to fight it as it takes more energy to fight. As said before we are individuals with Fibro, Fibro does not define us!

    Kindest regards,

    Ginny smile

     

    • Posted

      well done for trying other stuff and i hope you keep getting the bennifits, you ares so right ,it is important to stretch your ligaments and tendons

      i stop for over a year going out daily for a walk ,

      trying to my energy for a hobbie that i did,

      and iv really paid the price in the way of stiffness

      i am trying to stretch and twist each day enough but not to much that i injure myself, thats the trick . well done.

    • Posted

      Tina do you find you can manage without the usual painkillers docs give out? I am sick of taking so much co-codamol and tramadol and liquid morphine! I am using bath salts and eucalyptus oil in the bath, does help for a short time, thats when I am able to get in the bath! 
    • Posted

      for me yes at the moment i am able to avoid all meds from the doctors, iv had the condition since around 1997, and have had some really bab bouts

      but i just wont give in , it can be frustrating and tearful at times . but iv found what works for me . now after years of searching. and as long as it works for me il keep doing it.

    • Posted

      I'm with you Tina, I too had stiffened but made a marked improvement over the six week programme of pain management. That stiffness adds to the pain so if you can bite the bullet and manage to persevere with the stretches you will benefit greatly. 

      It's a juggling act some days trying to decide what to give your energy to. I have managed a cool bath and got a wash on and I'm bushed. I should have saved some energy for preparing dinner really. Never mind I have a phone and could enjoy a shish kebab....all the salad biggrin

      Oh, one of the best stretches for the neck is done by placing your forefinger on your chin and simply pushing it backwards. I have a headache now and have just done some gentle ones and the pain in my head has eased a little. Having spotted myself in a mirror I have decided that's one to do in the privacy of my home as it's not a becoming movement ha ha ha.

      Use it or lose it is my attitude now and I'm determined to keep moving

    • Posted

      Funny you should say that, i'm not far. It was a rheumatologist who has clinics at Whiston and St Helens Hospitals. I wonder if it is the same woman. It only took a neurologist at The Walton Centre 10 mins to diagnose me as he nearly sent me through the roof touching tender  points that I didn't know I had!
    • Posted

      thanks for the neck excersise i do get a lot of stiff necks so we give this a go. keep moving is the answer i think.
    • Posted

      yes i know what you mean about tender spots ,just knocking yourself on a cupboard door or so much as a finger tip pressed in to the calf or on the spine you could floor me .and i feel really sick as well
    • Posted

      You're most welcome. It's a nice gentle yet effective stretch.

      Definitely, if I sit for too long I feel more pain than if I move regularly. Some days I feel as though everything has worn out. I'm way to young for that ha ha ha, I suppose the young bit is relative lol

    • Posted

      They are, we have to be so careful. If I see someone I haven't seen for some time and they go to hug me I repeat the words...gently does it, gently does it just to remind them to be careful with me. My legs aren't too bad, it's my arms, neck & back that give me the most gyp. 

      I had never heard of Fibromyalgia prior to my diagnosis, my grandmother had polymyalgia and I know she was often in pain. However, my boyfriend had been having pain in his legs and having seen a consultant, has now been given the fibromyalgia diagnosis. What are the chances of that! Fortunately his pain is moderate and responding well to Amitriptyline. I'm going to take him to the pool and teach him the moves I learned in the hydrotherapy sessions. Ha ha ha, how fibro friends socialise ha ha ha ha ha...that thought tickled me so much I've hurt my sore head laughing ha ha,

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