Fed up with the pain

Feeling so so low today from this pain.... I have no choice but to work as I'm waiting for my pip decision to go through which will take up to 4-8 weeks.. But if I do get it I'm sure I will still have to work..

I'm in an out of hospital from the pain an always being pushed away because I have to wait for my rumotologist appoitment which is in 2 weeks time... It was the end of July but brought forward as my health has deteriated once again...

My legs are so dead today from my knees down I feel like I have no blood in them what's so ever, which is causing them to hurt an ache to a extreme...

don't know what to do no more, can't live like this I can't deal with this extreme pain and feelings what you can't even describe to know one, that's the worst bit... Not being able to family or Drs what it actually feels like because you can't actually describe or understand what it feels like...

7 Replies

  • I can only sympathise dear Leanne. People cant comprehend what goes on inside, so debilitating and brings you down. What have the professionals said is happening with your body? x

  • Bless you leanne, i have lups too i had a bad flare up last year where i was down and off work for 5 months the longer i was off the worse it became. I was down and depressed put on nearly 2 stone had no energy and i thought this was it. Even though i knew their had to be more to life than this. Since jan i have changed my lifestyle i eat healthy i dont skip meals, i exercise regularly, i set up a walking group 2wice a week. I have lots of energy. And now i help other people to get great results and reach their goals. I particulary want to help people with lups as i have it too. Let me know if you want to find out more as i can help you too. Stay blessed ☺

  • Oh i forgot i have lost 1 and a half stone in weight too ☺

  • Has anyone prescribed help for the pain as you wait for your appointment? Sorry if this is a silly and obvious question ......my sympathetic GP prescribed BuTrans patches some time ago, and I have codeine top ups if necessary. I worked my way up the stregth of the patches until I'm on the strongest. Last week it was time to replace the patch and I thought I would try without. Two days later I was in tears trying to walk the dog.

    I can only send you a big hug and hope they hurry up to help. Constant pain is horrendous.

  • Hi my feet so dead that I only feel them when I dislocate a toe then it's hell on earth , I have been prescribed gabapentin and it's helping know end ! But it's early days since still upping it ! I tend now to over do it again is stead of pacing , have forgotten my pain and fatigue clinic techniques, so after a mammoth weeding session in garden yesterday and not getting a huge amount done ! So stuck in bed today ! 🙁

  • Dear Leanne21bull I sense your despair. I can identify with your pain, sometimes I look at my lower legs and feet just to make sure they are not broken. The pain has been described as tightening, burning & nettle stings . I often describe the pain in my lower legs & feet, arms & hands as if someone is pouring boiling water on them! I thought initially I had skin allergies, but I realise this is the consequences of autoimmune disease & spinal injury. You are so right even close family members really have no concept of what is an exhausting, continuous & a relentless aspect of our lives. Have you any medication which brings you relief? I can honestly say that I do not know how you manage to work, perhaps when PiP has been organised you might apply for DLA ... or whatever that benefit's new name is? I do wish I could be more reassuring to you, perhaps the rheumatologist will help with some medication for your relief. Personal despair is overwhelming, not being understood is distressing. "If I had a wish I would give it to you!" My very best thoughts to you ...

    X Pixiewixie

  • Hello, My name Is Christina. ugh..I'm having a huge flare up and totally understand the waiting to get to your Dr. I have yet to see my Dr, I have apt, on the 29 of June. Which I' ve been waiting for since Last October!, I have Partnership Ins. so of courseIi have to travel 2 hrs to a Dr that will except my coverage. I find this not fair and cruel to lower income families. Ive been in and out of the E.r with either pain, trouble breathing or severe rash. Its so depressing and tiresome.

    I also suffer from many rashes and blisters, uncontrollable itching and burning sensation. I feel like a freak not stop itching. I suspect the flare ups are from sun exposure, but Im now going to start noting my daily diet. I would love feed back on solutions and remedies. Iam covered in rash from head to toes..two different types going on at same time :(. Id appreciate any ideas and support.



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