how long can flare ups last? i am a newbie at 24 and really struggling

hi there,

i have been ill since feb just after our 3rd miscarriage and the pain killers dull it so its an ache til an intense breakthro that knocks me off my feet agony often falling losing balance! i am wheelchair bound more than 100 so metres very weak legs and arms have tp use baby cups others too heavy drop them. i need alot of care assistant in/out bath help in bath dressing toileting cant cook clean anything etc my poor hubbys trying his best! depression anxiety real bad cry and have the dreaded thoughts get panicky! docs believe m/e and fibro are my problems awaiting consultants decision 3rd dec my main concerns will it go away pain ease other effects go and know sounds stupid all ive ever wanted do is be a mummy can i will i with this?!

sick of no one understanding when i muddle things up forget things cant conetrate or as ypu cant see the pains aches odd painful sensations pins needles stiffness etc that it doesn't exsist amount of time i've been called a drama queen faker it hurts. how do u cope i do try ignore still gets into my mind.

thank u all xxx i have read so much kindness support gives me hope

14 Replies

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  • Bless your heart you are having a very tough time firstly welcome to the site you will find it is really helpful. It is full of lovely people all in the same boat all trying to survive with Fibro. Each of us suffers I think more than we say, we do have patches when things work reaonably well and then others that are grim. But always we chat to each other and learn from how we all handle it. I try to laugh as much as possible (being a batty lady I really could not do anything else) Sometimes it is laugh or cry and I try to let laughter win.

    We are all on masses of pain killers varying it seems that some work for one and not another. There are lots of helpfull blogs but at mo you sound like you need a reassuring hug so here is one to get you started (((((((((((()))))))))))) never feel all alone we are always here come on line and have a chat.

    Your muddle is Fibro Fog and some days it is the devil of me I cannot type (then I blame the computer|\\\0 I speak with wrong letters at begining of words and forget peoples names completely eg next door neighbour been there for 18years keep loosing her naME.

    Acceptance for me was/is the most difficult thing but that helps me fight. Right enough waffling take care looking forward to chatting xgins

  • thanks for your reply on loads of meds 50mg morphine slow release tabs 2omg in am and 30mg eve and 2.5-5ml of morphine solurion between if needed for breakthro gabarpentin 1800mg divived 4 doses daily diazepam 4mg 3 x daily citaolpram 40mg daily propananol 40mg when needed dicofenaic 2 50mg daily but 3 if needed. sooo fed up pain clinic 18th dec 3rd reum app and OT visiting my home assess my mobility help needed stumble all time fall legs fail or feel like lead cant move normal???? i hope you are wel???plz tell me it stops and gives a break sooo tired i have mini aleeps one min asleep nxt 2mins awake xxx maybe my ME quey

  • Hun that is one hefty prescription I am sure the pain clinic will be very helpful on the 18th.. I suspect your mini sleeps are the pain control . I cannot comment about your heavy legs but any time you feel you need to go grumble at the doc. If you can manage on less morphine you will feel brighter but I am no doc just a friend who is heart broken for you.

    Try and rest have you any friends who will come and chat?

    gentle hugs for you lady I wish I could help xgins

  • Hi justlilme Just to let you know that "we" all understand all the symptoms that you are experiencing and you are not alone :) One of the hardest things is "not knowing" so once you get the decision on dec 3rd then hopefully you will be able to get the correct treatment and help from the doctors -- unfortunately this will take time and there is no "magic pill" that you can take to make it all go away. it sounds like your hubby is supportive and helpful. In the meantime if you are worried about anything just write a blog -- as they say "a problem shared is a problem halved" -- all the best for dec 3rd -- let us know how you get on. take care xx

  • thank u for your kindness and support kind words x x x

  • Hello there Justlilme, I am so sorry you are having such a tough time. It must all seem a bit muddle for you. My heart breaks for you having to suffer three miscarriages too, that is an enormous amount to have to cope with too and naturally affects you and your hubby deeply. I hope you have had support for this.

    Regarding your Fibro and symptoms - have you spoken to your GP lately, maybe had a referral to a Rheumatologist or Neurologist. I am not sure which Consultant you are seeing currently, so forgive me if I am overlapping here. Hopefully when you hear on 3rd December, things will be a little clearer and you will get the correct treatment.

    In order to be able to manage Fibro ,CFS and ME sufficiently we need the correct type and level of pain relief, also other meds to help manage our fatigue and other symptoms. Without this life can be incredibly difficult as I am sure you realise. However, with the correct meds it is possible to regain a reasonable quality of life and general well being. Of course we all have good and bad days with flare-ups now and then, but we can manage these as well as we can with medical help and support.

    You aren't being stupid at all when you say all you've ever wanted is to be a mother. That's the most natural and beautiful thing in the World and we all understand. My goodness, you can't be chastised for wanting that. I hope in time once your symptoms are more controlled and managed that you will realise your dream and have the baby you wish for. Make sure you are in the best possible situation health wise and hopefully that will increase your chances of keeping the pregnancy, obviously seek professional medical advice regarding this.

    It sounds like you get the frustrating Fibro Fog too! We all get muddled up, forget things, say the nuttiest things and get our words muddled up too! All part and parcel of Fibro's rich tapestry. We all have experienced people not believing us, thinking we are faking it all and being dramatic. It isn't an easy ride initially with Fibro especially when we don't understand what the heck is happening either. Slowly with time once we've become more used to Fibro and the mechanics of it all, it does get easier. You will get to the stage where it doesn't matter what other people think, as long as your nearest and dearest understand and support you, that's all that matters. You know the truth and I am sure so does your hubby as he lives with it too.

    Have you had a look at our main site at FibroAction? The reason I say this is that it contains lots of useful and informative information about Fibro, the symptoms, treatments etc. It might be helpful for you and hubby to take a look through this. Here is the link which will take you there -

    fibroaction.org/Pages/About...

    I hope you find the information helpful. :)

    Please be assured that we all understand here, you are amongst Fibro friends! We all care about you and will do all we can to help and support you as much as we can. If you have any worries or concerns, please do not hesitate to talk about it all here. (message Admin if you would prefer to discuss this privately, we are always available with a listening ear.)

    Take care, here's a hug for you! (((hug))) xxxx

  • Have you considered talking to CRUSE Bereavement Care Juslilme? This may help you by talking about your loss. Sometimes by working it through with someone impartial this can help you during the grieving process. It's just a thought.

    Here are their contact details -

    Their contact info is as follows -

    Daytime Helpline 0844 477 9400

    Email - helpline@cruse.org.uk

    crusebereavementcare.org.uk...

  • thank u again for your kindness and i will look into it thank u x means sooo much as i am sure u all know x

  • You are going through such a rough time of it right now. And I had three children as well as fibro so it is possible, there is no reason why fibro would stop you having children in any way as afar as I know. I said you hugs and warm thoughts xxxxx

  • did u cope okay i dont mean to be nosey but also ive had 3 mcs already and miscarriages drain me mentally. thank u so much for all your time thoughts and kindness xxxxx thank u

  • I had 2 miscarriages as well as three kids. I had one, then MC, then another child then MC and then third child. I coped okay through it. I was in pain but it was manageable. I wish you luck and love in everything xxxxx

  • You have a broken heart as well. Is there anywhere you can go to talk about your feelings and bereavement of your babies? Your heart is sore. I really hope we can help you in some small way to mend.

  • i am seeing a counseller bout everything but they dont really understand certain things like the pains the mental pains the memory problems walking issues everything like u guys xxx rather chat we you all to be honest x

  • Please feel free to chat with us at any time Justlilme, we are always here for you and happy to help you in any way we can.

    If ever you wish to discuss anything privately, you can always private message Admin by using our messaging system. For example if you go to my profile by clicking on my name, it will take you to my profile page. From there look on the left and you will see the option "send a message" and that's it. I will always get back to you asap. Everything you say in those messages is completely confidential and wouldn't be discussed in our community.

    I hope you find this helpful. (((hug))) xxx

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