recently diagnosed

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Hi all iv recently been diagnosed with Fibro although I have suffered many years now that I have a diagnoses I suddenly feel completely overwhelmed with everything. I have 5 children and my husband is supportive where he can be. I'm really struggling with things I can no longer manage as I have always been so independent the thought of having a carer coming in to do my jobs really upsets me. Does anyone else feel this way??

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  • Posted

    Hello nicola

    I was first diagnosed when I was 20 by a locum doctor.  Because so little was known about the illness my then doctor said I did not have it.

    After years and years of unrelenting pain and constantly being told it was depression I moved to a new county and was formally diagnosed 3 years ago.  I am now 54.

    When I was diagnosed it was not a surprise as such, but I did definitely feel like you do now.  I know it is very common to have the feelings you are having.

    I too am a very independant person and a single mum to 2 children.  I worked right up until 2 years ago when a lot of life changing things happened in my life and I had pneumonia.

    That finished me off!  I still look after my children and the house as best I can but I would be lying if I didn't say that every day is a real struggle.

    I am on lots of medication to help relieve pain, etc., but the only thing that really helps is Oramorph and my GP is insisting that I cut down my use of it due to addiction problems.

    It does take some time for it to sink in.  My opinion is that at least you now know what you are dealing with and can get some support.

    Take some time just to let it all sink in for a while. Fibro does not get progressively worse and hopefully you are 'just' in a full flare at the moment.

    Are you on medication and do you know the sort of things you could be asking your GP for?  For instance a referral to a Pain Clinic?

    Let me know if I can help with medication suggestions and places to get help.

    I really feel for you.  This condition is awful.

    Gentle hugs

    xx 

     

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    • Posted

      Aww bless you hunny. Iv had this a long time but just diagnosed a few weeks back. I'm on basic pain killers until I get an appointment for the pain clinic. But upto now I was relieved that I had a diagnoses and then I went through a phase of being adamant that it wouldn't beat me, now I get upset daily because I'm soo limited to what I can do I'm 29 and feel as though my good times are pretty much over sad xx
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  • Posted

    Hi Nicola51831 I was diagnosed last march after 10 years of trying to get a diagnoses. Tou go through different emotions when your first told that you have fibro. 1st its anger 2nd grieve for the person you once were 3rd denial of how you are and what youve got. 4th acceptance. it took me over a year to finally except the person I am now and to accept this horrible condition.you will find you wount be able to do what you were once able to do. we all have to learn to pace ourselves eg wash monday tuesd polish may be hoover. its just doing things a bit at a time. if we dont we can end up being more ill and in bed for days.Fibro is a learning curve because we have to adjust to how we are now. Ive always worked been inndependant its very hard accepting that you are no longer independant and that you need help and support. support help off family friends husbands is invaluable its something we all need to have. in 2012 2013 2014 I had to have full time carers in I couldnt walk and couldnt speak. I had to have help with everything even down to toileting showering. I lost my dignity my self worth it was horrible. having to have different strangers coming into my home.Having this forum is agodsend as we all know how each other is feeling and what we are going through. Having fibro varies from day to day with all the different symptoms it throws at us its a battle every day but battle on we must take care gentle hugs xxsmile
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    • Posted

      Thank you kaz at first I was relieved after being told it was all in my head! Then I told myself it wouldn't beat me now I get upset daily at my limitations I'm turning 29 this week and feel like my life has just come to a halt! I hate this but I need to find better coping mechanisms xx
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    • Posted

      like you I felt relieved when told what it was, then shock and daunted by how it affects us. it is a learning curve getting use to how we are now. it is upsetting frustrating knowing you are limited to what you can and can not do. by us all sharing with one another on here it does help. especially when others just dont seem to understand what fibro is like for us. we are all here for each other as no 1 understands fibro better than we do. take care gentle hugsxx
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  • Posted

    Hi Nicola, first of all welcome. It's a club no one wants to be in but we do our absolute best to support where we can. 

    I've  been diagnosed for 7 moths now and at first I was elated that someone finally believed me and had a name for it. Now I too am angry and grieving for the life I once had. It's a perfect normal reaction but it doesn't make it any easier to come to terms with, does it? 

    All I can really say is thank goodness for the amazing people on here, and also try to be kinder to yourself. It's nobody fault it just is what it is. 

    You will Always find somebody on here almost 24/7, so try not to feel alone. 

    Take care and gentle hugs xx

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    • Posted

      It is bewildering but I take comfort in the fact that there are people on here that are managing to cope after decades with this awful condition. I do miss work and the sports I did though. What do you miss most? 

      On an upside I think we begin to learn things about ourselves that we didn't even knew was inside of us. We end up having a strength that others can't even contemplate. We need it to deal with the daily battle. 

      Take care xx

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    • Posted

      I think I miss just being physically active with the kids more than anything and being able to do what I want. Knowing there will be very few days with minimal pain is overwhelming, but I suppose we all soldier through. I find it especially difficult as I don't have a social life and only 1 good friend who lives miles away and no family close by for support I have a good husband though he tries his best to support me xx
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    • Posted

      I completely understand what your saying. Thankfully my children were old enough to cope as I became ill. My oldest had just left home and my other daughter would have been around 13 but was struggling with (at that point), an undiagnosed rare condition that caused severe blackouts. My poor husband was caring for me, my daughter, his daughter, (who had a double transplant), and his elderly mother. I'm surprised he didn't throw the towel in. 

      Im also quite socially isolated, the friends I thought I had have quickly fallen away and no family close by. Nearest family is in Kent and I'm in Manchester  and the next nearest is in Northampton at uni. My eldest daughter lives reasonably nearby but for reason far to complicated to go into is unable to visit me at home. So in some ways we are in similar situations. I think we all find our own path through this. 

      As for the pain, there are many options. There is the usual throw every type of pain medication which in itself is a lot of trial and error, then there's cbt, acupuncture, hydrotherapy, physio, swimming etc..I'm sure others can add extensively to this list,. 

      Good luck and gentle hugs xx

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    • Posted

      My husband thinks hypnotherapy will work although I'm not so sure. His perspective is that my head caused the illness so my head should cure it rolleyes. Which I found quite patronising to be honest. But he is clueless to the illness he has done little research into it but he does not question my pain levels or when I need to rest xx
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    • Posted

      Hmm, I'm not sure what to say to your husbands comment although I know what my response would have been had my husband said that. That said hypnotherapy has been shown to be effective on pain. Think of women who give birth just with hypnotherapy, not sure how your husbands theory would work in that situation 😳 That aside meditation is also a useful tool as the more relaxed we can be the more we are able to cope. Have you tried going to a pain clinic? If not ask your GP. They have a lot to offer as they are specialists in pain management. Even my husband learned something when we both had sessions with a pain psychologist. I also learned much more about pacing myself. When you think you have one more job/chore in you, STOP! 

      Hope your finding everyone's suggestions of some help 😊 

      Take care xx

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    • Posted

      I felt like saying something to him but I bit my tongue told.myself he don't get it and that he is probably annoyed that he can't help me and he hates to see me struggling. Now I'm telling myself to hide the pain as much as I possibly can to prevent him saying things that I'm likely to retaliate to. If that makes sense. I'm awaiting appointment for the pain clinic. They don't rush these things. Think I will try the denial route for a little while after reading other people's posts on here there are others a lot worse than me xx
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    • Posted

      I think your right, our husbands partners do find it difficult, it makes everyone feel helpless at some point. The pain clinics are quite overwhelmed with patients, but once you get there you get to access other avenues of pain care. As hard as it is please try not to hide what your going through, it helps no one, especially you. 

      I. Hope you don't think I'm telling you what to do, I'm hoping to make your path a little easier. 

      Take care xx

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    • Posted

      Hi Nicola51831 I would see if your gp would refer you to a pain clinic. where I live we get free acupuncture for 12  weeks and hydrotherapy for so many weeks. we are also offered CBT I went to a hypnostist in 2003 it wasnt for fibro but another problem I had. It cost me £35 it workd for me, he was very good who I saw. I was sceptical about it but glad I went as it solved the issues. Anything is worth trying have any of your family friends been. I know members of my family went to see some 1 to help them stop smoking. it didnt work for them. They didnt see the same person I did. Different things work for some and not others. its trial error that is avery big part of having fibro everything is trial error. asfor the comment your hubby made we are lacking in certain chemicals in our head 1 of which is serotin cant remeber the other 1.I dont think theirs much chance of our heads curing it though. take care gentle hugs xxsmile 
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