21,657 members17,169 posts

HI hope everyone is keeping well. I have been suffering now for over 2 years. My pain started in my back after moving a large lady at work

Although when I look back prior to that I would say I had some good and bad days but I never really thought much of it. At the age of 26 I had a full hystorectomy due to the pain I suffered,as well as feeling drained.

Anyway after damaging my back I eventually had to have 2 discs removed from my lower spin and I still haven't seemed to of recovered. I also suffer pains and weakness in my aend and legs well all over really. when I went for my after check up I tried explaining to the orthopedic how I felt, he requested a bone scan to check for osteoporosis. while there I explained I was in pain all over. I went on to explain that I couldn't even brush my hair some days, he didn't seem to care he just didn't understand why I had been refuted to him as I hadn't broken any bones so needless to say tests where fine.

so I decided to do some research of my own, even though I don't agree with self diagnosing but feel I don't get listened to. After I put my symptoms into a symptom checker it came back suggesting lupus. When I mentioned to my physiotherapiest he requested some blood tests. I got the results today although I still feel none of the wiser. He said the tests where all border line except my white blood cells where a little low, but nothing to worry to much about. he has now send me for yet another blood test to check my vitamin D.

my symptoms are, butterfly rash on my face, pain in my joints as well as random places from head to toe. Especially top of my legs and my for arms(Was told that was tennis elbow) I also have numbness is my hands and feet as I can't seem to stay warm. my fingers go really white. I suffer really badly with boil like sores and when given antibiotics they take a few courses to clear. I'm feeling really down in the dumps and wonder how much more I can take. And to top it all of I'm trying to live on 45 pound a week as I'm fighting for my ESA so on the minimum payment. which they then take deductions from for a social loan in 1994. sorry for rambling but I'm so close to just giving up. as I'm not living I'm just existing. :-( thank you for taking the time to read my ramble cd

2 Replies

Hi, this is such a familiar story and it really annoys me how many people have to fight and hit rock bottom before they are listened to, I know it isnt much of a comfort to you at the moment, but you are not on your own.

Are you seeing a rhuematologist? if not you need to go to your gp and insist on a referral, try to do a bit of research on local rhuemys and find one with a speacial interest in SLE and get your gp to request the one you have found. You can either search on the internet or phone your local hospital and speak to the rhuematology department.

Sit down quietly and write down every single symptom you have, even the little ones, and comment on how they affect you.

Take photos of any rashes you have or anything that is unusual that you can photograph.

When you go to the appointment take charge, insist that the Dr reads your list, and have questions ready. This is your life and your body and you are in charge, only you can fight for yourself. If possible take someone with you.

You might be at rock bottom now but once you have someone that takes you seriously you will start to feel better.

What area do you live in? Is there a support group close to you? If there is I really think you should go, you'll be amazed at how you feel with people around you that know exactly what you are going through as they are going through it themselves.

I really hope you start to feel better soon

Take care



Thank you for your reply. I only just found where my question thing was. I've not been refired to anyone as the pyhisio said my bloods where border line. Still waitting for me vit D results. I was told I had to just learn to live with it and following relaxing techneckes so I just do as I'm told now. I'm tired of fighting. How can u just learn to live with pain, as well as forgetting ro do everything x


You may also like...