Hi I have been reading this site for such a long time and today, whilst I relax on a sunbed in Greece, I read something that made me post.
I feel like I have lived with pain for such a long time. I have so much anger inside me! 10 years ago my periods became extremely painful. For 8 years, after countless scans and a week in hospital after coming in to A&E, and after years of people thinking I’m a drama queen, I saw a consultant who did a laparoscopy.
I had endometriosis that had blocked both my tubes both ends. Fibroids. Plus severe pelvic inflammation disease which the consultant told me had probably been there over a decade ‘and would have been considerably painful ‘ oh really!!!! I ended up with a full hysterectomy.
By this time I had already given up my career as a radiographer as I simply couldn’t spend all day on my feet. I was constantly exhausted.
After I assumed the aches and pains were the surgical menopause (I could only take so much oestrogen (I was 37) as my mother died of breast cancer which she had at 41).
A year later and I’m no better. Still not back at work. Marriage broke down and my daughter went to uni leaving me alone. I thought I was just depressed. I had been told the hysterectomy may not cure my pain or pelvic inflammatory disease and it didn’t. Now on top I felt more tired, my joints were so painful especially my knees (these were X-ray’d before the hysterectomy and I was told I had early onset osteoarthritis) but now my hands and my back.
Finally the go to me seriously enough to see a physio. He found inflammation down my back - he suspected a damaged femoral nerve and referred me to a back specialist/surgeon who I am still yet to see.
I saw a rheumatologist who did bloods and x-rays. Although my bloods were normal inflammation was found in my fingers, the furthest joints from the hand. My knees only need be looked at to see the inflammation.
The rheumatologist has diagnosed psoriatic arthritis and fibromyalgia but when I asked if the swelling that was in my back could still be a damaged nerve he just shrugged. He said only a small amount of inflammation was found in my fingers so I’m guessing the fibromyalgia diagnosis is because I shouldn’t be in as much pain as I am?
Since my hysterectomy I have had terrible stomach problems which I was firstly told was adhesions, as when I had my hysterectomy they found adhesions from my Caesarean and therefore I was in surgery quite some time whilst they separated my bowel from my stomach.
The rheumatologist wants me to start methotrexate but as I was just going on holiday preventing them doing a blood test two weeks after starting I have been told to wait till I come back. I know the drug quite well as my grandmother had rheumatoid arthritis from the age of 30 and ended up on methotrexate. I know how awful it can make you feel.
So my GP is now saying my stomach problems are due to IBS and that nothing else can be done about the pelvic pain/PID. Along with the psoriatic arthritis and fibromyalgia - my pain now just needs to be ‘managed ‘
I had given myself till December when my savings run out to get better and get back to work. This now feels impossible as it seems like I have come to the end of the line with everything.
I am not enjoying my life at all. I cannot enjoy food any more as anything I eat causes me to be ill, I’m constantly tired no matter how much I sleep, if I walk further than my back would like the pain brings me to the floor and my joints are constantly stiff and painful.
I don’t really have a support network. My mother was my support and she died in 2010. None of my friends seem to think I need support and most people I have told about my arthritis and fibromyalgia just don’t seem to (care? Understand? Want to support me?)
I was starting to feel like a complete failure and that I should be able to cope with this on my own. That was until I read a post earlier advising someone who had just been diagnosed to take it easy on themselves and look after themself. Actually made me cry as though that person was talking to me.
One of the things I don’t understand is that although I have pelvic inflammatory disease, this can make my belly swell 7 inches larger I have to have two different sized clothes and bras , Plus my knees which are clearly inflamed but yet my bloods come back with no inflammation how is this possible ? Does anyone think that the inflammation the physio found in my back could be the arthritis ? And again if he found inflammation why is this not showing in my bloods?
I’m also concerned as I have a friend who has RA, she started methotrexate four years ago and recently had heart failure due to problems with her lungs and they have taken her straight off methotrexate. I have been a heavy smoker on my life and I know that methotrexate can cause fibrosis of the lungs, this worries me
I was also reading talk on here of overmedicating and I am thinking if nothing is showing in my plants and the rheumatologist clearly thinks I shouldn’t be in as much pain as I am then maybe I should just try and cope without for as long as possible ? Especially as I already have the side-effects of a bad stomach and fatigue
I am so confuse yet I can’t seem to get anyone, my friends or my father who is my only family to even discuss this with me. They just dismiss it And say it’s up to you.
When I just had my pelvic pain at least it was two weeks out of every four and so I planned my life around it for 10 years. Now I just feel awful all the time. They also loaded me with codeine and tramadol to cope with the pain of my ‘painful periods’ before anyone bothered checking it out.
After my hysterectomy I wanted to come off the painkillers but obviously the new pains kicked in and I ended up being given patches - buprenorphine. Had I known how strong these were I never would’ve started them. I only found out as I went to the doctor to say I needed to have something for bad days yet there is nothing you can take on top of the patches (my stomach can no longer handle ibuprofen etc.). I said I wanted to go on something we care, of course the doctor agreed living that I wanted to reducce my pain control.
She told me the best thing to do was to convert to morphine and then drop me down of that - I had already dropped myself a third by taking the smaller of the two patches off four weeks before but yet to my horror she gave me 140mg of morphine slow release a day!!! Apparently this was equivalent to 45% of what I had been taking for 4 weeks!!! So I dropped a third then another 55% and she waved me off on holiday. It’s been like hell! All that morphine and I can feel my body in withdrawal plus the pain is agony.
I’m on holiday alone at the moment but my daughter joins me tomorrow and she has no idea I’m not well, she’s at university and I didn’t want to worry her however I don’t think I will be able to act for a whole week with how bad I am feeling
Sorry this post is all over the place it’s the first time I’ve got all this out in the open. I’m not even really sure what I am asking, so good luck to anyone who replies ! Although I would really appreciate any input or advice very much especially the inflammation not showing in my bloods?
Peace and love to everyone (meditation and yoga are the only things getting me through right now)