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Really wish people understood!

Posted , 15 users are following.

marc14933
marc14933

I am getting absolutely sick and tired of the people around me (particularly my partner) to understanding my fibro. When I'm withdrawn because of the pain he lambasts me constantly because he thinks I'm being like this because of him. I have told him time and again that stress makes the pain worse and when he is getting on at me or shouting at me. To be honest all the stress of a relationship is making the fight all the more harder.

What is everyone elses family like with them and does anyone else just feel like running away and just trying to cope on there own.

3 likes, 29 replies

29 Replies

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  • tiswas24537
    tiswas24537 marc14933

    Posted

    i saw a sign on f/b the other day it went something like this 

    if one more person says

    we all get tired

    you need to pull your self together 

    you just need to do a bit of excirse 

    we all have bad days 

    you just need an early night 

    i will not be held responable for my actions .

    i think it sums up how most of us feel.

     

  • Flowerlady
    Flowerlady marc14933

    Posted

    Hi Marc..We all on here know exactly what you are going through. Today I am having a really bad day, I can hardly move around. My youngest daughter said to me only last week 'what are you looking so miserable for'..I said I am not miserable, I am in alot of pain. And her next breath was 'can you look after the kids for the day' with that I said NO...Did not go down too well, but tough how I feel comes first these days. Try not to get yourself too stressed about about your partner, you will make yourself worse. Tell him to get on the internet and read up on Fibro..he will hopefully then understand what you are going through.. Most days I feel like running away, but where to? The rest of my family always say 'you look ok' that really drives me mad...Try not to worry, and have a better day...Regards...Anne..biggrin
  • wendidly643
    wendidly643 marc14933

    Posted

    Hi Marc   I really do feel for you and I totally understand what you are saying  My partner is ok but my daughter expects the world to stop if she stubs her toe but when her tea is not ready on time or her washing not done then I am just lazy.........   I asked her to read up on Fibro and she says she has but still does very little to help and shows no signs of understanding   I put it down to her age and selfish attitude that comes with it........Hope you are feeling better soon and that you partner takes the time and effort required to understand this illness   If you are ever fed up we are all here for you biggrin
  • Carinaeta
    Carinaeta marc14933

    Posted

    Like Tiswas's reply a lot smile

    Marc, sorry to hear it's all getting too much, support for an illness that is invisible is always hard to get. Your partner sounds like he needs a bit of a reality check, would he be shouting at you if you were sat in a wheelchair, I doubt it. How can your reaction to your illness be because of him? It sounds like he either needs to be the centre of attention or can't cope because your illness is taking the focus off him. It may not be selfishness, it may just be that he isn't coping well with the adjustments in your relationship due to your illness and this is his way of dealing with it. I would try to sit down and have a long honest chat about what you are feeling and how the illness affects you and where you hope your relationship is going and how it will fit in with all this. If you dont think you can do this without an argument, both write it all down first seperately and then compare notes in a relaxed setting. Once you have done this you will hopefully feel either a lot better or at least you'll have a better idea of where the problems lie and whether they can be solved . Either way i wish you the best of luck xxx

  • teresa05446
    teresa05446 marc14933

    Posted

    Hi Marc, sorry to hear your predicament. I've only recently been diagnosed with fibro(last thurs) I don't think anyone realises what it's like having this horrible condition. I thought I was going crazy. How long have you been suffering?

    Teresa

    • marc14933
      marc14933 teresa05446

      Posted

      Hi Teresa its been about 6 months or their about but feels like 6 years. I'm 28 and had a diagnoses 2 weeks ago. I am condemned to a life time of agony. I am simply not built to cope with this. I would honestly consider euthanasia.
    • christine26761
      christine26761 marc14933

      Posted

      Marc...it really does get better....I've had it diagnosed and Sojrens Syndrome too,  plus I have other medical issues....For over 22 years now, it did take a few years of pain before I was diagnosed as many of us do... so I probably had it for years before that..I tell you that,  to tell you this: Once  you get yourself & meds sorted, wether natural or prescription..you will slowly start to see some light at the end of the rainbow..I just have flare ups now..I can handle it all really well.. I couldn't handle it very well fir the first few years..it is not a death sentence...we just have to adjust...then we find out we don't have to adjust any more....we all have sooo many different symptoms, one med that works for one doesn't work for another..so number one is a good Rhumotologist that can walk you through it all with empathy- sometimes hard to find...try to be as stress free as you can...stress free is the key to living well with Fibro...as far as family and friends are concerned..I found that they miss who we were...they go through an almost grieving time for  us..they just can't fix us...they sometimes are really hurting cause they can't...that is a huge obstacle for some sufferers..maybe it is worth taking them with you to a Rhumo..so they can have it all explained to them..the ones that are very close to you that is, like your parents or your partner..I'm really feeling for you right now, your very young...but please remember YOU ARE NOT ALONE..please .keep on blogging and chatting to us..we all know your suffering most  of us have been through it..Also Fibro cannot progress any worse..you either have it or you don't...it only has different Symtoms that pop up from time to time....be blessed Marc...praying for you....you are sooooo worthy..and a much needed part of your sphere of influence..:-)xxxwink
    • marc14933
      marc14933 christine26761

      Posted

      Thank you Christine, thanks for the messege, really kind and I appreciate it.

      I mentioned a rhumatologist to my gp but he said there are none in my area so that's not an option.

    • christine26761
      christine26761 marc14933

      Posted

      I am in Australia so it might be different if your in the UK, but specialists go into places p-visit Dr' surgeries for the day, if there is none there , specialists of all the specialities...really.feeling for...be good to yourself..your worth it..:-) xxxx
  • chrissie72261
    chrissie72261 marc14933

    Posted

    hi marc i had the same problem but ended up splitting up he couldnt take anymore and he didnt understand about fibro constantly in pain but i have RA aswell with mine my brother s very understanding but the rest of my relatives dont want to lknow or want contact with me hi hope you get them to understand marc 
  • jenifer59179
    jenifer59179 marc14933

    Posted

    Hi Marc,

    Yes many of us I imagine feel exactly the same as you and have partners who respond/behave in the same way as yours. I've suffered fibro pain since I was pregnant with my second child in 1986 so I think my husband thinks "oh she has coped with it all that time so it can't be too bad", which infuriates and saddens me as if someone I've spent 30 years of my life with doesn't 'get it' then what chance do we have?

    Jen x

    • tiswas24537
      tiswas24537 jenifer59179

      Posted

      iv been married since 98 and he dosent get it ,all i get when i have a very bad day and im in tears ,is what do you want me to do about it cry

      really helpful .

      i never get a meal cooked for me . or the house cleaned properly for me dosent matter how bad i am if i dont do it it dosent get done ,some times it goes for weeks driving me mad and no one will lift a finger . 

  • sha1271
    sha1271 marc14933

    Posted

    Hi I havent been on thus site for awhile and haven't replied much in the fibro topic. I have had it for years but inly got a dx this year. My husband ha been understanding but still doesn't quite get it when im sensIitivits too much. to touch. I had a horrible flare with a sinus infection on top of Iit and just wanted to crawl in a hole. my oldest daughter asked why am I always ill. She also gets mad abd makes me feel guilty for not watching her kids.

    I finally started feeling better and decided to join a gym. So far the work oyts have been making me feel good. I dont push myself , my friend doesnt quite get that and says "oh you will be fine" but I stop when I think Its too much. I really need to work out because my stress and anxiety is getting bad and I want to lose weight.

    I hope your partner will start to understand and I hope you feel better soon.

    • christine26761
      christine26761 sha1271

      Posted

      Hiya Sha, I excersise too,,,I can only walk up and down a heated swimming pool, but at least that's my effort it works for me...and it is sooo good for your mind, total wellbeing...so well done you, I just don't bother wasting my time anymore worrying about what other people expect of me...especially when they know why!!! that's their problem  not mine...I won't own it anymore....I just worry about making  myself feel as good as I can ...sounds like you don't bother with their thought much either..Fibro is just horrible to live with...others will never quite understand what we go through..so less time on them and more on me!!! lol..be blessed, keep up the good work..:-) Australia
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