struggling to cope

Posted , 11 users are following.

I was diagnosed with fibromyalgia after many years of tests, to try to get to the bottom of what was wrong with me. Im finding it hard to cope with it Im always in pain tired all the time. no one seems to care or understands. mu husband does his best but struggles with helping to look after. I feel useless as I cant do what I use to do. I just feel totaly alone and unhappy. I would be interested to know how other people cope with it. 

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12 Replies

  • Posted

    Hi Kaz

    You are not alone.  Nobody really understands our pains but US!!!

    Staying calm and positive and stress-free is the key to getting on with your daily life.  I have been suffering for over 20yrs and only got diagnosed Aug 2014. To finally put a name to my pains was a relief.  Since finding out I have had CBT(Cognitive Behaviour Therapy) and found this wonderful forum, where I have made many on-line friends to help get me through my day and offer support to those who may need it. You will learn on this forum all are here for you on your bad days as well as your good days.  Share your experiences with us and you will find you are not alone.

    Gentle hugs and take one day at time.  wink x

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  • Posted

    It is very hard to cope with. Mine is caused from going so long before getting diagnosed with Rocky Mountain spotted fever. Try mucinex tablets see if they help you with your pain any. Google fibro & mucinex you will see some fibro suffers have some relief. Seems to help me some. Good luck Hun!
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  • Posted

    Hi Kaz. I understand completely. I have a similar story - suffering since the 80s finally diagnosed couple of months back. It's not that people don't care or understand believe me they do they are just at a loss to know how to help. They probably feel totally out of their depth and finding it as difficult as you are. Give yourself time to adjust to the "label" and let them do the same.   As hard as it is a positive mental attitude  helps.  Your fibro is individual and unlike anyone else's although you may share some of the same symptoms.  Baths with epsom salts, gentle exercise, heat pads, massages,, hypnotherapy and a complete change in diet to eliminate refined sugars and gluten have all played their part  for me.    I cannot take any drugs as the side effects are too bad for me so I use some supplements and vit D3.  I thought I would have to give up work but have battled to stay in employment as I feel it gives me a purpose and keeps me from feeling lonely but I know it is not possible for everyone. My dog also gives me a reason for getting out.  Try and concentrate on what you can do and be kind to yourself. Tomorrow is another day and we all know fibro may well be behaving itself tomorrow.

    Take care.

     

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  • Posted

    I have that feeling of being lonely.. My husband is great but sometimes I feel like I should be helping too. I too have a rough time doing things that I used too do. And I work full time too in a nursing home. I get through it but it's hard. I just take my time and I take one day at a time. The depression is the worst but just take one day at a time and you'll get through it. I know you hurt all the time that's the worst. I feel your pain. I'm here if you want to talk.
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  • Posted

    Kaz, i have also gone through the same thing as you for years! Sometimes it is easy for a doctor to diagnose you with fibromyalgia when they have no more answers. Please go to the lab and have your blood tested for carnitine! I finally found a dr who did this for me and found out i have a severe carnitine deficiency. Now i am taking 990mg per day and am already starting to feel better! No one understands what we have to go through in life so please do this for the small chance rhat it could be your problem too! Let me knowsmile
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  • Posted

    I feel the same. Im 35 and im struggling so much Hence the reason i just joined.
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  • Posted

    Hi Kaz,

    My friends used to call me fembot as I never used to sit down and was always on the go, fast forward to the present and now even small chores leave me exhausted and in agony that evening or day after so I know how you feel when you say you feel useless. The only way I really cope is by reading info on the condition and all relating conditions, it's probably not helping but it makes me feel like I have more control and as Drs are generally no help I want to make sure I'm knowledgable. I take cocodomal and diazepam as and when I'm desperate but try not to take anything unless I'm writhing in pain. That's just my personal choice as I have tried a lot of meds but not found any that suited or didn't have lots of side effects but loads of people benefit from meds so I wouldn't rule them out.

    I'm not sure anyone other than someone with a pain condition can understand the situation. Only in the last year has my partner got it a bit more but still doesn't really understand, that's 6 yrs so 5 of me just feeling like he thought I was being a wimp. Perhaps get him to read some online forums etc where people talk about the pain and fatigue they feel.

    Good luck

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  • Posted

    Hiya Kaz, really feeling for you...gentle hugs from over the seas...this is quite the norm for most of us in the first years...try not  to stress..stressless is the key to living with Fibro..most of us had this around 5-10years before   diagnosis. I've had Fibro.. Osteo Arthritis, Sorgrens Sydndrone... Asthma and Chronic Fatigue now all diagnosed..,for about 24 yrs - probably had most for 10 years before that too....they are all autoimmune issues..this is quite normal  too. I think the worst  thing for me apart from the constant pain/muscle spasms was the tiredness ..once I was on the right medication I was right...most of my meds are all natural..I only take one that isn't...I guess my way of coping was having such great understanding and empathetic support-mainly my husband..you really need to have good support..even if you have to educate fruens and family with google print out of Fibro...anyone that will bring you down, you really need too drop.until they learn about Fibro ect.....you definitely cannot afford to be feeling bad/sad about your condition,,you need understanding....I've had it for that long now I only get bad flare  ups or if I know I'm doing too much.. I know I'll pay for it-sometimes it's just worth it...lol...they are all related issues and cross over symptoms anyway...so I have found at the end of my tunnel..do hope you find it too..always remembering that trying to keep STRESSLESS IS THE KEY to living with Fibro ...hope you find lots of help on here, I'm sure you will...best place to be....please take encouragement in the fact that your never really alone, we are all here for each other...be blessed..have a lovely day..:-) xxx
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  • Posted

    Hi Kaz,

    I was diagnosed this past October plus undifferentiated connective tissue disorder. It is a struggle & frustrating, but w/ counseling I am strength myself w/ accepting things I can do & pacing myself w/ that acceptance. Yes, your feelings/ emotions R normal & U will have those good & bad days, but I have listened to all my drs about keeping a exercise routine whether or not U do it each day or a day here & there. I realized I have to drag or push myself or I will just start to go into a depression...Those dark days R not where I want to be...Keep in mind, everyday is New & to honor yourself w/ every challenge & accomplishment. This makes me C each day as another adventure, so no matter how small or big my day is its my day that I can be proud if !!!

    Hang in there, take each moment & day with pride... It will get better.

    Smiles & Giggles

    Valerie826

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  • Posted

    Hi kaz i too was on the go all the time running around doing housework bringing up a family going to work been in pain for a long time cos i wasnt putting myself first i was coping now im just about coping going to work my family all grown up isplit housework every day painkillers help maybe justa suggestion find something to take your mind off it something thats gentle to yoyr body me my grandson keeps me going sending hugs and best wishes
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  • Posted

    Hi Kaz

    You are never alone when you are on here, today I am in loads of pain and completely exhausted. Going to have a lie down soon, I do this every day for a couple of hours. I feel like an idiot going for a lie down, but at the end of the day its me suffering so wht the hell. 

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