please help!

Julie.. I'm with u all the way. We have very similar management techniques. Geat advice...Unfortunately there is no magic pill! )

Hi, just looked up Prednisolone - yucky. You probably know it's a steriod and if taking it for more than 3 wks you have to carry a card telling people you are taking steroids. It also suppresses your immune system and shouldn't be given to anyone who has / is suffering from depression. Maybe there's a nicer drug you can take that could give you a similar relief? Can understand a doctors reluctance. However, its all about which one's more important.  Maybe if you tell your doctor you've read up about it and accept what it is / what it does and that you need the relief it gives you more than the risks it might have, then they will perscibe it to you again? Maybe you have ME/CFS as well as Fibromyalgia? Maybe a drug aimed more at ME/CFS would give you some relief? Best of luckx

Thanks, yeah I have always avoided steroids, particularly as I have struggled with my weight ever since I had a few injected into my spine many years ago under a general. I know what they can cause but the way I am looking at it is that I am feeling lousy NOW, so the risks in ten years or whatever are something I would be willing to accept to give me some quality of life at this time. The orthopaedic specialist thinks I could have PMR which can lead to GCA if untreated with preds which can cause blindness. I am starting to think this could be a correct diagnosis with the pains I am getting now. My hips are dreadfully painful, my shoulders are pretty awful and my knees have recently started and the fact that my jaw has been aching iver the last two weeks is starting to worry me. He also said RA should not be discounted. This is something that was actually considered  years ago but some strumpy rheumatologist dismissed it immediately after I gave her a note from the stroke clinic doctor suggesting RA from my brain scan results, she huffed and just simply pushed it back to me and then said as I had no rheumatoid factor in my blood it was not RA and sent me away! The doc at the stroke clinic had told me I must give her the note, but she obviously didnt want anyone else diagnosing her own speciality. About 25% of people with RA do not have the rheumatoid factor, and now I have bumps appearing on my fingers, nodules. Gosh I just want a proper diagnosis so I can get the correct meds and get on with my life. I miss my job so much and my little narrowboat. Preds worked for that week and I honestly felt so good I would have really been careful to avoid the dreadful side effects, changed my diet etc and I would have been able to exercise to prevent the excess weight and osteoporosis etc. sorry for the moan, just get fed up some days x

Hiya hun you moan all ya like it helps a little to talk about it has you feel there is no one listening to you i also have them lumps on one hand on two fingers iv also had the carpul tunnel done on both hands and one hasent changed just dont think enough is done for people like us hope you get some help liz

Thank you. They said I had carpel tunnel syndrome too years ago but then changed their minds. I cant help thinking that they diagnose us all with fibro cos they just dont actually know what it is. I was told by one rheumatologist that fibro isnt an auto immune disease, but that I do have an auto immune disease. I wouldnt mind betting that half of us on here actually have an undiagnosed illness, as so many people seem to be diagnosed with it! There are 3 of us at my place of work out if ten that have been diagnosed with fibro. We all have totally different symptoms and the other two are able to carry on working, one being the domestic! I dont know how she manages it! But 3 out of ten - that is some statistic! I know for a fact that one of the rheumatologists at our local hospital has diagnosed absolutely loads of us with fibro and his colleague will then say it is not! He actually told me that he is always doing it and getting it wrong! It doesnt exactly inspire confidence in our so called health professionals does it?! Seems no-one on the Wirral is expert in fibro and if there is anyone I certainly have never been referred to them and everyone else just doesnt know enough about it, or other musculoskeletal illnesses, in order to determine which one it is. My gp told me it doesnt matter which one as they are all treated the same, with pain killers, which is an absolute load of b****cks, pardon my french, as there are so many different things for RA, MS, PMR etc. it makes a huge difference if you are not taking the right ones and also could be making matters worse, so I just wish someone would actually take the time to find out properly, once and for akk and stop rolling their eyes when they see you all the time. THey wouldnt see me often at all if they took the time to look into it properly for goodness sake. Seems crazy! But the documentary that was on recently tells me a lot. Most surgeries are businesses so any tests they pay for come out of their own budgets, which obviously affects their profits, so no wonder they have been reluctant to do certain tests. Its only cos I have been so much this last year that I am finally getting an MRI on my back cos of urine incontinence and numbness in my leg and hands. Sorry there I go again! Lol rant over x

Hiya hun no thats fine first they said i had M.E and sent me away with a leaflet and iv sufferd with depression and panick attacks since i had a fractured scull 24 years ago never been the same since and has iv got older i now had blood preasure and liver p.b.c and o.a.depression been on tablets mitazipine for ten years i get pain everywere even headaches constantly get realy down and struggle with every little thing lately iv just changed g.ps so im hopeing for something possitve to happen when i go back keep you up to date hun and good luck yourself liz

Blimey you have been through it too especially having a fractured skull! I hope things improve for you very soon. Let me know if your new gp is better for you. Hope so, fingers crossed. Good luck x

Hiya hun and thank you will keep you updated takd care liz 

Darling you sound in an awful way. Although they say you shouldn't just think of today without forgetting about tomorrow, it sounds like something you must do.  You are prepared to try you best for any counteractions of long term steriods.  You must strive to get a better today for yourself.  Don't give up keep hunting for how to improve how you feel right now.  To be honest it is your life and we all are just another patient to the doctors who have a long list of patients.  It doesn't mean they don't care it just means they are stretched.  When we walk (or hobble) out of their doctors room they move onto the next person.  For us we live fighting through the pain and emotions of our conditions.  Keep searching and fighting for yourself.  Don't forget to make sure something makes you smile each day.  That moment of pleasure keeps helping us all. Hope you are having a "good" day today. Gentle hug x     

Thank you. I will hopefully feel a little better soon, just had to drive my son to work and it crippled me all the way back. If I drive for more than 20 minutes I get terrible hip and leg pain, so the return journey was dreadful. I have my legs up now. Have to have a heart recording monitor fitted this afternoon too. I do try to look for positives in life as much as possible. It is very frustrating though when I finally found something that worked and cant have it, so now have to lie here suffering. I will have to take oramorph now to relax my hips and legs and I hate taking that, as well as all the codeine and tramadol I take. How good can that be for anyone? 

Well I hope you have a good day too and thank you x