update for those that know me

hi i havent posted on here for a while but read people posts every day i feel your pain,im not in a good place at the moment constantly having melt downs im now in constant pain every day i go to sleep with it and wake to it the pain has shifted and changed i have violent pain in my thighs,groin,lower stomach,hips,back and buttocks i have such dark days i dont know if i can do this anymore have suffered for years seen so many different specialists to no avail had all the meds available.at present i take zapain and use biofreeze gel this gives a little relief for a short time . ive been on a diet since last april and have lost just over 3 stone thought that might help.im waiting to see yet another specialist i have an appointment to see a neourolgist at the end of feb think they are going to test me for lymes disease and do some electro tests on my legs sorry for waffling but im feeling so low and frustrated that noone can tell me what is wrong with me apart from fibro/me,ibs,arthritis,degeneration of the spine the list is endless why me ? sorry im just feeling sorry for myself today thankyou for reading my post and hope you all have as much of a good day that you can all have . joanne x

10 Replies

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  • HI Joanne

    You rant away as much as you like. Don't let this illness beat you. Hopefully the further investigations your having will lead to some better pain management. Please tell the Dr's what a dark place your in too.

    Be kind to yourself have a nice warm bath if you can or a gentle shower with some nice smellies. Have a treat of some kind, you say you've lost a lot of weight well sod it have a cake or chocolate it doesn't hurt to have a treat now & then. ( I did find loosing weight no help either)

    Gentle Hugs

    Lou

    xx

  • I know it is of little consolation but you are not alone with having to live like that. I personally think the worst bit is not finding anyone to help. We keep trying one thing after another but nothing seems to help. Having to live with excruciating pain 24/7 is something only those who suffer with it can understand. All I can offer is empathy and the hope that one day the powers that be will find out what causes this torture so they can find a way to relieve it. They are working on it, let's hope they have a breakthrough soon 🐸

  • Hello Joanne

    Many congratulations on your weight loss 😊

    I'm so sorry if this is a silly question, but have you spoken to your GP about your pain medication to see whether there is anything he or she can do for you?

    It's ok to feel sorry for yourself. I think we all do from time to time.

    I just wanted to wish you the very best of luck with your upcoming tests and investigations.

    Wishing you calmness and peace

    Lu xx

  • Hi Joanne,

    oh bless you honey, I do feel for you. Know what it's like being there. I remember many times over the years when laying in bed for days & just sleeping forever.

    I have seen so many specialists & doctors over the yrs I have lost count, ignorant, arrogant and sometimes dam right rude and nasty and one wonders how or why they ever got into a caring job, wanting to help people, 'cos the only help i got from most of them was making me feel worse, it just knocks you back all the time and is so stressful

    My advice to you would write a list of all the pain you have and how you feel and take it with you when you see new Rhuematologist, take someone with you for support, also so they will be able to jog your memory and know about your problems and tell them exactly what your going through.

    I do sincerely hope that you will get some answers for all the pain you are experiencing. I know it's easy to say but try to do things to take mind off it, read, watch film, have you got a tens machine, hav you tried Actipatch, they have a free trial for 7 days it's £2.95 & I'm absolutely amazed how it's helped my lower back pain. You can Google it comes up straight away.

    What pain relief do you take, go back to GP & say you want different pain relief if what you are taking are not helping.

    It's a struggle but stay strong and you will eventually get there.

    Thinking of you

    Peace, luv & light

    Jan xx

  • Joanne I feel your despair I feel like you on dark days .. Is it worth it?

    I don't get many good days ,but then I think of my family and friends like know

    That want me to keep fighting this nasty evil illness.

    I exersise as much as I can take my tramadol and do you know sometimes I feel normal.

    Like you I lost weight and eat the healthiest diet going it still does not stop the

    pain. But apart from pain. ..I must be healthy... Mustn't I?...

    Keep your chin up..🌞🌞🌞🌞🌞🌞.

  • Wow, well done you on losing all that weight, amazing. Maybe you aren't on the right pain medication for your fybro/ME/arthritis, have a chat with your Doctor, I couldn't get through the day without my pain medication 😃

  • Sorry you are feeling so low I think we have all been there and worn the T shirt as some days it is so difficult to be optimistic about things when you are in so much pain. Despite this you have done a marvellous thing by losing all that weight. Hope the appts. go well and they can find some answers for you.x

  • Hi joed

    I have read your post with so much pain and sorrow for what you are suffering and enduring, and I want to sincerely wish you all the best of luck. I genuinely hope that your appointments go well for you and that you can achieve some answers and resolution and relief from these. Please take care of yourself.

    All my hopes and dreams for you

    Ken x

  • Waffling is fine, I think we all do it, me too :P

    Well done for losing so much weight and I'd be interested to know in due course what effect if any it has on your condition.

    Hugs and fluffies for the rest :)

  • Sooty to hear you are in pain. Wish I could tell you the eeg is not painful but when the test my nerves it hurts a bit. Good luck and hugs

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