Just been diagnosed with Fibro. Please can anyone help???

After 25 years of suffering with extreme pain, muscle pain, depression, undiagnosed rashes, etc, etc., I've recently moved due to my ex husband, who I was with for 28 years and who left me for another woman, died 6 weeks after being diagnosed with cancer. BUT before he died he married "the other woman" and left her all of his money. I was left nothing and have just had to sell my house as I could not pay my mortgage without my exes maintenance. I've worked solidly for 34 years but since my ex died I caught pneumonia and was in hospital on Christmas Day. We had 2 children together. I was forced to resign from my job as my boss threatened me with the sack as he said I was lazy. Due to my balance problems I was accused of being at work drunk and again threatened with the sack. I've moved to a new area as I've fallen out with my family and friends over my exes death and I have no partner. I saw a Rheumatologist at my local hospital 2 weeks ago and was diagnosed with Fibromyalgia. FINALLY I was taken seriously. My problem is that I have 2 children who are my world, but that I now have to raise alone. I simply can't cope with the pain anymore. I'm 52 and yesterday I could barely walk. I'm having problems with Atos too. Just getting up in the mornings is agony. I'm trying to hide my pain from my children but not succeeding too well. I'm really sorry. I hope you can understand what I've written. I'm tearful all the time and my Fibro seems to have gone through the roof about 2 months ago. I now cannot stand any type of noise. I read about another sufferer saying they felt their issues had got worse since their diagnosis ~ me too. I'm on all sorts of pain meds but they don't help much, if at all. I really feel like I just can't cope anymore.... Can anyone help me with some coping strategies please? I feel as though I'm tipping over the edge ....

15 Replies

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  • Coz1,

    Firstly, you have to realise that you are now unable to live in the same way you were. It is hard - as a man I have had to "shrink" my own "field of influence" and try to identify what and who I need to distance from the limited resources ("spoons" if you like - look up Spoon Theory) and then the "what and who" of which you need to draw more help/teamwork or whatever assistance you need from. The other thing that has helped me is to learn to relax your mind/thinking around stressful encounters - meditation you might say - or mindfulness about your thoughts.

    If you are in a new area then investigate which doctor might be best for you - for your FMS. Next, find a good support group - that could be locally or online - I find some Facebook groups (the individuals in them really) help me immensely.

    Letting go of the person you were is the hardest part (I've found - as a thriving project manager in IT/Telecoms).... with that, the only way to go is to find some good person to talk with about the multiple emotions/thoughts that are going through your head... Someone outside of your circle of usual interactions, online or otherwise. You can even self-refer for some help there using the Government Gateway option. You sound intelligent and able to navigate your way - you recounted your feelings very well indeed - so I have faith that you will get through this.

    I wish you the very best of the wealth of human kindness you will find in the rockpools along this sandy path...

    Take care

    Gary

  • Thank you Gary for taking the time out to read my post. I will Google the Spoon Theory. Many thanks too for your kind wishes.

    They really are much appreciated

  • Hi Coz,

    I'm sorry you're feeling so down - it looks as though you will have to rebuild your life - it can be done, so don't lose heart!

    The first move is to get your pain under control - it's the single most important factor in managing fibro, so keep visiting your doctor until you find medication which works for you.

    Almost all of us here have had to do the 'trial and error' thing to find the right combination as there is no drug that suits everyone.

    Once you have sorted that, then let go of the past. It will be difficult, but it can't be changed, and allowing yourself to become bitter, though understandable, will make you yet more ill.

    You are depressed, and that too is understandable, but it's also treatable. You may find that some antidepressant therapy would help, but having someone to talk to would seem a good thing - maybe your GP could arrange some counselling for you?

    You can raise your children on your own - I managed three of them on my own after my husband died, and they've all turned out very well. Relax, and go with the flow - the less you stress yourself, the less pain you will suffer.

    Don't hide your pain from your kids - at least not all the time. They always realise when things aren't good, and they need to know how things stand. Tell them that you're low, but that you're making every effort to get well, and enlist their help where you can - they will be fine!

    We are all here to help and support you - we all understand how you feel, so come here to have a good moan, a bit of a laugh and to find helpful hints on managing things.

    Finally, I think you should see a solicitor about contesting your late husband's will. As you have children under 17 you may be able to claim some money from his second wife's inheritance to help with their maintenance. His children would still be deemed to be his responsibility even posthumously, so the courts might see fit to make a settlement for them.

    This will take you a while - but you will see the dawn of a new day, and we'll all be here to celebrate with you when you start to feel that life is worth living again.

    Stay with us, and very best wishes!

    Moffy x

    Reply to this

  • Hi Moffy

    Thanks for your lovely message. I'm just feeling very lonely and sorry for myself. I found this site about a week ago and I can already see what a lovely bunch you all are. So caring and kind.

    I guess it's that we all know just how bad Fibro can be. I get so many people constantly telling me how well I look! I feel like shouting at them and saying that I don't flippin feel well :)

    Coz x

  • Awhhh - take no notice of them, Coz - if they're persistent tell them it's contagious! :)

    Moffy xxx

  • Hee Hee. I'll have to remember that ~ thanks :)

    Coz xx

  • That's the spirit, girl - you'll do! xxx

  • Shame darling it's a hard pill to swallow, it is truly life changing, but life does go on. Once you sort your pain management it will gradually get better. Life will get better,I know by because I have had FMS for 18years. Make sure you talk to your friends and family if you can, because that will help. I really do feel for you love, but try and smile as much as you can. Happy genes are remarkable things, xxx

  • I've had problems for 20years and only got diagnosed in March so have much empathy for you hunny..Fortunately by the time I was diagnosed I'd already been thro pain management, stopped working and was rattling every time I moved due to the amount of meds that I have to take. Plus I spent the whole time in and out of many consultant rooms telling me there was nothing wrong with me....aaaarrrrggghhh! LOL but life will get better for you with the support of your family and friends. Take it day by day to begin with and only set yourself a few tasks to do and reward yourself for everything you achieve even for the little things... go on try it! it really does help with self esteem.

    If I manage to get to my friends house 10doors down from me using my sticks and not the wheelchair I reward myself with choccy cake! when I get through the pain it causes I reward myself with a bottle of my favourite beer or wine. You could use the reward system to get your hair or nails done for instance, find out if there are any mobile beauticians/hairdressers near you that will come to see you.

    I really feel for you and I hope things start to become better for you and Moffy really does give some sound advice, I think I might start telling people its contagious LOL then I won't get half as stressed explaining all the time what FMS is and then what HMS and CFS blah blah is! I'm currently chuckling to myself at the thought of that. hee hee.

    Big hugs hun and take it one step at a time

    xxxzebxxx

  • Hiya Coz. It's sad that things have worked out this way for you, but you can do it, I promise, and the kids will be good. My husband died almost 5 years ago and it is hard work bringing the kids up but they're doing well and people tell me they're a credit to me. I have no family nearby so am doing it myself. It's our "new normal".

    I can't remember what it's called but the kids should be considered in the inheritance, contact citizens advice or a solicitor (I believe you can get a set amount, 30 min's (?) of "free" advice from solicitors) to find out.

    Try to let go of the hurt, it will drag you down terribly, you don't need that at all. (The night before my husband's funeral I found out things and it took me a while to get over that, and everything else that goes along with it and fibro. I feel reasonably good now.)

    Good luck with your "new normal".

    Is

    x

  • Hi coz. The 2 "New" words you need to introduce into your life are "acceptance" and "pacing".... You are never too old to change... I am the same age as you and have now adapted my life style to accept fibromyalgia... My husband does not understand ( I have given him lots of information to read... but he hasn't got a clue!!) My children don't believe "it" exists... so I have learnt how to handle it myself... as peachy says the Spoon Theory is a good starting point ( butyoudontlooksick.com ) also paintoolkit.org has a great booklet about how to live with persistent pain. I guess your children are old enough to help you with chores so get them involved. I have now got my symptoms "under control" by pacing and accepting my limitations and have managed to return to work part time... I think the problem with having a diagnosis is it is great to give it a name but nothing changes because there is currently no treatment or medicine that is going to "cure it".... only by learning to adapt your life will you be able to handle it.... be strong, be positive and you will "pull through" good luck xx

  • Firstly well done you have the hardest part, been open and honest with yourself and now us. That is a very brave thing! Secondly you are no longer alone.

    You need to get on top of pain first and the best way is to relax and not do to much, how old are the kids and can they help in any way for example chores etc. As for been worried about your pain they will know no matter how young so being been open and honest with them makes the know where you all stand (assuming they are old enough to understand, my 7 years knows I'm having a pain day or tired day so mum can only do stuff sat down etc , whereas my 10 years can help lift things carry things or get down from high areas for me) Accept all help you can get, and try to pace yourself, my biggest mistake is if I have a really good morning i try to do too much at once, so what if your house is not spotless,spending time with kids is more fun.And finally there lots of people on here who have lots of good advice, what may work for them may not for you, but it worth a try. As for depression please don't bottle it up, let it out! it OK to cry it helps sometimes too but have you thought of counseling, it not could you write a journal (even if u can spell) it dose help. Here hoping you feel better soon.

  • Chin up hun,it's hard but believe me you will get there.My ex hubby was a bully physically and emotionally abused me for years till one day I left with my son and daughter and the clothes on our backs.

    Court cases you name it he kept the house and I ended up in a small flat with two kids who he was never interested in.At the time I thought i'd never cope but you know I did a degree in zoology and went to work in spain for two years.You will get there hun.Good luck.xxxx

  • Thank you so very much to everyone for all of your advice and tips. This may sound a bit strange to some of you, but I'm a very spiritual person and I get such lovely vibes when I come on here. It's quite surprising how similar a lot of our journeys have been/are - with the Fibro on top. You all sound so strong. I know I have to learn to rest more, but once I've sat down it's so hard to get back up again. I've had to enlist the help of my children which they've taken on board really well. Does anyone get large extremely itchy white lumps on their neck, top of their back and sometimes on their hands? I've seen loads of GP's but none of them have been able to diagnose what they are. They flare up when I'm more stressed than usual. I currently have six on my neck and back.

    I would like to send gentle hugs to all my new friends. It is wonderful to chat to people who actually DO understand just how bad this horrible condition can be xx

  • Hi Coz.... firstly my fibro friend I send you warm glowing healing from the the Angels of light, and the strength of faith faith from mother earth... There is a process that we all have gone through and are still going through , most of us, if not all have had our past lives ripped from beneath our feet.. as with many of the fibro peeps here pain management is your number one priority... your second is to talk to your children tell them that you are poorly that you will need their help.. my kids have been brilliant, we can even laugh at my fibro fog now.... I truly empathise with your past, as it happen to me only a yr ago, my OH left me for my best friend... however, I will not allow myself to be bitter play victim to his infidelity, he left me as homeless and pennyless, I am 46 yrs old and have had to start again,, not the ideal situation in the world when most of the time pain and depression are your new best friends.. However, you will come through all of this and be a stronger person, you will work through all your emotional stuff and come out brighter, but for now, you need your kids and they need their mum.. if you can learn how to relax taking the time to just be.x gentle hugs. HC

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