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Any suggestions

Posted , 6 users are following.

josephine25095
josephine25095

I have recently been diagnosed with fm and am having problems getting my family to discuss it let alone understand it. All my family have passed away and they are the only people i have to talk to. my first support group isn't until september. I feel like I'm screaming inside and don't know what to do...any suggestions? Jo

0 likes, 16 replies

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  • tiswas24537
    tiswas24537 josephine25095

    Posted

    i know that feeling of screaming inside, i am still doing it.

    because fm has so many symptoms other the pain and fatigue most people i find

    think its all in the head, we know its not, but theres no getting it other to most people

    iv had since 97 and my husband still dosent get it and neither do my grown up kids they just think its mum with the miserys . theres not much you can do. if your leg is hanging of people get it but these hidden disabilitys . are just that hidden.

    just know your not making it up , be kind to yourself ,and try to ignore hurtful remarks ,  get a relaxtion cd and do twice a day to help keep calm because when your stressed the symptoms flare.

    • josephine25095
      josephine25095 tiswas24537

      Posted

      Thanks Tina. I am begining to realise you have to havre it to understand it. I don't think my lot are ever really going to get it. the only time they seem to know when I'm really bad is when theres no dinner lol. Am off to a sleep clinic soon so maybe that will help some. thankyou for the support. take care Jo.
    • josephine25095
      josephine25095 tiswas24537

      Posted

      Hi tina and many thanks for the support as it has made a huge difference to how I feel today. I don't know if I have replied to you once or twice as I have cotton wool head today. please forgive me if I have done it twice. I think you are so right that getting worked up achieves nothing and I have to look after my needs a bit more and they need to accept they may not always get out of me what they want. Thanks for being there Jo smile

    • tiswas24537
      tiswas24537 josephine25095

      Posted

      thanks jo glad i am of some help . i find it so frustrating feeling like i have to keep trying to prove that i am really ill ,and not just lazy, and when like your self your family dont be leave you ,you feel so alone and sometimes think that your crazy,

      iv had many times where i just sob because people dont believe me,  i think like others i try so hard to keep doing stuff even when it hurts or when i feel like iv got a hang over with out the pleasure,

      the fatigue and brain fog are the worse for me,, when the fatigue is really bad i just cant do anything .except sleep.

      its lonley as i have no friends and no other family close by ,so its just me and my aspergers son and my husband, i get more comfort from my dogs, i was on my knees crying the other day i got really bad stomach pains from constapation, and my little scruffy, just jumped on my back and liked my tears .

      i am glad it wasnt the other dog would have knocked me out , its funny how dogs are more tuned in to your emotions then people. take care try and have a good day. tina

    • patricia17763
      patricia17763 tiswas24537

      Posted

      Hi Tina

      your story of your dog comforting you when you were sobbing really got  to me,  I have had a good cry myself just thinking of you, hope you are getting over it now. I just posted to you, but had to post again, it's our emotional stress that makes us feel worse.

      my stress at the moment is through food,  nit knowing what to eat its a b----dy nightmare.

      You will laugh I rang up a nutritionist in Birmingham to enquire about help with my nutrition, and she said with my list of complaints it would be a long programme and she said her fees were not cheap so I imagine it would a thousand or so, told her to forget it but she did give me a few tips said not to drink tap water, take turmeric capsule and avoid all preservatives in food which is pretty difficult, and cooking from scratch is not always possible.

      My GP has referred me to a dietitian but knowing the NHS god knows  how long that will take.

      Got to wash my hair tomorrow that always takes a lot of effort and holding my arms up is torture

      Where do you get most pain, I get it in the back chest and shoulders the worse, usually put a hot pad on it but doing it in the hot weather just makes me sweat buckets.

      Will go for now, keep your chin up.

      Pat

    • tiswas24537
      tiswas24537 patricia17763

      Posted

      ahh thanks for reply , if you have ibs avoid turmeric capsuals i tried them and ended up with a ibs epsoide,thats lasted several days.

      i also found that the any of the those drinks with the supposed good stuff in them or even the tablet form , do the same.

      yes holding my arms up or out kills me after just a few seconds

      i used to hate washing my hair its a lot easier now we have a shower instead of a bath,only problem is i miss the long hot soaks in the winter.

      my condition got a lot worse after my first fall in 2000 when i broke 3 ribs

      the worst of my pain is between my shoulder blades neck and shoulders.

  • airyfairy85
    airyfairy85 josephine25095

    Posted

    Hi Jo,

    that sounds very difficult. I am lucky to have a supportive partner who understands and tries to help. However, I'm not sure the rest of my family really get it, although they mean well.

    I wonder could you contact someone from the support group and asked whether anyone there would be willing to meet up with you over the summer for a chat, as you are feeling alone and need someone to talk to? Don't know if that would work- just an idea! I'm sure there are other people close by who would be available to meet over the summer.

    I found a good leaflet on fibromyalgia on the Arthritis Ireland page (I'm lrish), that you could try to persuade your family to read....it's called 'Living with Fibromyalgia' web link:   http://www.arthritisireland.ie/assets/73/6873BE2A-9A66-3FBC-14F3E5532AC8F6E3_document/Fibromyalgia.pdf

    Do your family help you at all? Maybe you could ask them to come along next time you are visiting the rheumatologist, and ask him/her to explain a little to them? Again - just a suggestion. Wish I could help you more.

    Take care,

    Marie :-)

    • josephine25095
      josephine25095 airyfairy85

      Posted

      Hi there Marie and thanks for the support and link. My partner has come to appointments with me but seems to pick up on the wrong things. eg excercise can help. I think people then assume we sufferers need to dash out and do loads of excercise...erm don't think it quite works like that. talking on here has been a life safer because I now realise that if you don't have it you'll never truly understand. It seems to me that understanding from someone in the know is vital to stop you feeling so alone and thanks to the replies I feel better in myself today smile. Knowing there are others out there will keep me going until I go to support group. You said you wished you could help me more, well you have so many thanks again and take care. Jo :-)
  • patricia17763
    patricia17763 josephine25095

    Posted

    Know how you feel about the screaming insid e, the Psychiatrist I saw said it was emotional stress, and how difficult it is to overcome, but he did say relaxation helps a lot, I find it difficult to relax as there is always something going on in my head, trying to explain it to family and friends is hard my husband and son think you should try not to think about it, if they were in the amount of pain we were in they would sing a different tune. There are ways to ease it, if you go online to websites that deal with fibromyalgia there is a wealth of information.

    You do feel very alone, but see if your Doctor can refer you to any groups that deal with Fibro.

    i take the UKFIBROMYALGIA magazine and there is a load of info in that I got a

    Exercise down load, if you look on You Tube itgives Tai Chi for Fibromyalgia that is nice and gentle,

    they say exercise is good but can give you hell if you overdo it.

    Nutrition is also very important, though a nightmare if you get Ibs with Fibro as I have

    Anyway enough for now,

    Best Wishes

    Pat

     

    • josephine25095
      josephine25095 patricia17763

      Posted

      Hi Pat and thanks for replying as it has helped me an awful today and I don't feel so alone today smile. I realised yesterday that my family will just have to adjust as for the longest time they had wonderwoman doing everything. Wonderwoman is now long gone. I'm not going to push myself towards a crash anymore just so everyone can get what they want. Time to think about me now and go for a bit of self preservation I think. I'm hoping to get started with yoga and swimming when the sleep clinic is done with me. Have the IBS too which is just another little bonus added to the condition as you know lol. Many thanks again for replying as your reply and those from others have made me realise I'm not alone. take care Jo smile
  • Mrs_doodles
    Mrs_doodles josephine25095

    Posted

    Hi jo this May seem harsh but don't explain to them .... Don't visit.... Don't call them ...... Nothing and when within a week or so they are ASKING WHY  you haven't CALED BLAA BLAA BLAA  then say I have FYBROMYAGIA   It works honey I promise xxxxxx
    • josephine25095
      josephine25095 Mrs_doodles

      Posted

      Hello Mrs doodles. Thanks for replying and yes i do agree with you. I just said to Pat that the woman that managed miracles in the house years ago is long gone and now there stuck with me, like it or lump it now. I think it is just as well that we don't have the energy to clump someone after we get many of the usual comments "you need to take your mind of it, it's all in your head",or "I'm sure it will get better" and my all time favourite "Yes I get tired too!" Don't get me wrong I'm not trying to be angry at the world because I have fybromyalgia but at the same time surrounding myself with people that are going to wind me up is not good either. Early days for me yet and what your saying makes total sense to me. They either accept me with it or have to realise I don't have the energy to keep explaining something they will never understand. many thanks Jo x x x x x
  • patricia17763
    patricia17763 josephine25095

    Posted

    Hi Tina

    also having a bad day today, been to the Doctors this morning no help whatsoever, because your blood tests are ok they seem to think you can get on with it 

    he said you are 78 and woman live on average to 78  I did not know to laugh or cry,

    personally I think he does not have a clue, he did give me a spray for my nose as get

    really congested, hope it helps.

    Sorry to hear about your constipation are you taking anything for it, I take Movicol

    does help me,

    I have a friend but she is not very sympathic, they don't realise how painful it us, only see her now and then, my brother lives in Devon, only have a telephone call from him

    about half a dozen times a year. My son lives in a village outside Melton Mowbray, so do not see home every often, he thinks all I need is to get out and about. My daughter in law is a Specialist Nurse in long term conditions, so you think she would understand more, she thinks I need another antidepressant, they want me back the way I was, so do I but it is not going to happen,so I wish they would just accept it.

    Do you get any help with your son, you sound like your dogs keep you going, I think dogs are great companions, had two, could not manage one now.

    This weather is really getting me down, it going to get cooler over the weekend thank goodness, I thank god when I can go to bed and take my sleeping tab and be out of it for a while, even relaxation tape has not helped today. I hate the weekends, always feel more anxious, which flares the fibro. That fibro fog is terrible have it all the time, stops me from being independant, and going out in the car because balance is bad, have to ask the husband to take me everywhere, hate it.

    Well Tina I hope you have a decent weekend, did you say you live on the coast in Yorkshire?that must be nice it does keep it a bit cooler on the coast, where abouts do you live

    it was 29c in the car today

    bye for now,

    Pat.

     

    • tiswas24537
      tiswas24537 patricia17763

      Posted

      i live in FILEY NORTH YORKSHIRE , ITS OFTEN COOLER but being it seems more humid by the sea , thats worse for me.

      i couldnt manage to walk my dogs at the moment so my son and husband do it. with out them i would have to hire a dog walker

      i couldnt be with out a dog, the small one is my daughters who is supposed to be going back to her in augast but his been here for nearly 5months and his attached to us, and we are to him , so thats going to be stressful ,i want him to go back because its hard work with two, but iv fallen in love with him, and he loves the garden, and playing with my dog, so i am worried that his going to be lonley left in a flat all day while shes at work .

      i am hopeing he wont settle so we can have him back ,i know that its sounds nasty , but i really dont like dogs in flats , especialy terriers.

      my grandfathers family came from melton mowbury, i would love to live in tilton on the hill near melton , i have a big connection thru my family to melton my family were builders carpetners etc , and actuley built a house there. i grew up in leicester city, loved it so sad to see whats happened to it now.  hope it cools down soon . chillow pads placed in the frezer are great , about £6.00

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