Hi all,
It's been a while...now ready to face a bit of reality. Last post was seeing the GP for referal to Reumatology. This didn't happen...'you are a work in progress' says doc. Next stage before being referred is more blood tests and Xray, and a low dose of Prednisolone ( which made me feel ill and more symptoms than I already have, so stopped them) Results...moderate OA of hips, and bloods 'normal. Doc still thinking it is more likely to be PolyMyalgiaRheumatica...so this time he gave me a mega 20mg dose of soluble Pred.once daily. One dose was enough to prove I absolutely cannot take these steroids. Symptoms went into overdrive with extra heart pain/headach/nausia/ insomnia (was up the entire night in a state if anxiety and mild hallucination), plus the usual, swollen lega, breathlessness and no relief from muscle pain at all. Am not sure whether depression was from the drug, or because it is all getting me down...especially after attending Epsom hospital orthopaedic clinic, where I stood for a couple of hours in a hot portacabin (OPD). Had to go home without being seen as I couldn't physically stand any longer and there were no seats available. What a waste of time and misery making!
Sorry to rant on, but am now of the opinion that I'd be better of easing myself along with the dis-ease than making things worse.taking the pill route. To be totally honest, I stopped reading posts on this site because it made me feel bad hearing how you are all suffering without much hope or help, but have to admit it is a relief to vent with fellow sufferers...so hope this is not making you feel bad as well???
Am praying for you all for better days ahead.
Shalom
Chickabee
Chick-a-Bee. who says ther's no hope? You've not been reading the posts, aye, aye, .. People that try new things come here and share and we exchange ideas to help each other.
There is hope!
Sleep well. 
HI...try to not lose hope please...there are new drugs ALWAYS coming on the market.....I am sorry that you have had to go through so much, you have been very, very UNLUCKY, especially drug trade wise.....I truly hope that it gets better and you find a treatment that helps....good luck, and take care ....HUGS to you....DEIRDRE xxx
Chickabee, sooo sorry to hear if your ordeal,please don't think there's no hope..we all live on hooe....there is light at the end of the tunnel..I'm witness to that....you really do need to see a Rhumatologist and get some sort of diagnoses, at least then you can start seeing some light..you can't even start to deal with your issues if they are not acknowledged-diagnosed...I ampraying for you chickadee...really hope things improve for you..it took 10 years of differing Symtoms being treated..grrr..before my diagnoses as it did with many of us on here...if I had only know then, what I know now...I would have insisted on a Rhumo referral..and not painfully wasted soo much time..have a lovely day....be blessed..:-) shalom to you too..:-) cxx
Hi Chickabee
It's a slow process and we all have good and bad days but we do not give up and the help on this forum is a godsend to many of us.
Once acceptance has been taken, then treat one day at a time.
We are all here for each other, so please do share your experiences with us all.
Gentle hugs and stay positive. x
Thank you Deirdre...will soldier on, what else is there to do! Will try and muster HOPE, because that is what we thrive on eh.
Blessings
Chickabee
morning chickabee dont give up hope, we have all had to endure countless tests blood tests galore tets coming back negative been made to feel like its all in your head, 1 specialist making me out to be a liar I gave him what for? my gp sent me to see a rheumatologist who then diagnosed fibro after having even more damn tests its a rocky road we have to travel to get a diagnoses. your gp needs to send you to see a rheumatologist i would battle all the way to get seen by 1. its great once youve got a diagnoses but more battles lay a head dealing with fibro, but you have us on here for support dont loose heart I know its not easy weve all been their and are wearing the t shirt. chin up keep fighting gentle hugs take care xx
oh chickabee, i so sympathise. I too cannot take prednisolone; my doctor was to be honest somewhat disgusted at me for refusing to take any more - a resigned shrug of the shoulders and slight shake of the head and the attitude that if i didnt want to be helped, she wasnt going to offer anything else. I have OA in ankle and thumbs and attending the clinic for the ankle was similar to you, total misery. An average of four hours waiting to see someone for a scant five minute appointment only to be told 'we have to fuse the joint' (with resulting permanent disabilty) - how many times do I have to say NO to an inexperienced junior doctor with poor English?! A gazillion blood tests later and my GP group practice still haven't diagnosed fibro - just more referrals - next one is a neurologist. To be honest I don't believe I'll get any better treatment/results if fibro IS formally diagnosed - I'll only get offered more of the same pharmaceuticals that either don't work or make me ill (steroids, opiates, etc). I guess a diagnosis may bring with it some actual belief and sympathy but I don't really care about tea and sympathy and believing me is only any good if it results in effective treatment, of which there appears to be none, or at least the jury is out regarding 'proper' treatment, here in the UK anyhow. I hear you about feeling even more down when reading of the agonies fellow sufferers contend with, some with no light at the end of the tunnel. The one big benefit I get from these forums is there's always someone willing to do more research, find out new routes and come up with new ideas - everything is worth a try! The other is that these people understand - they understand I'm not malingering, they understand my pain, they understand my heartache and frustration. That really helps me through each rotten painful day. I now know more about the condition, I have great relief at knowing now that it's not instantly life threatening, that it's not going to kill me tomorrow and more than anything else, that it's finally being acknowledged as real and more research is being done continuously to find a) the actual cause and b) ways to treat it. I can go armed with better information when I see useless doctors, I can use terminology I hadn't a clue about before and try to make them listen rather than just sitting there distressed and confused. Lastly, I am totally inspired by the true grit and determination of my friends on here - they give me hope. xxxxxx
OOps...wrote a bit, then my PC went into chaotic mode...a bit like me! Thank you Christine, I will try and push the doc for a referral tomorrow when I see him. I do totally rely on hope, it was the depression (new to me) that makes me rather negative. Fleeting though...hopefully. Am taking on board all that you say...reaffirming what I already know to be true.. Updates to follow. Have yourself a good day.
Blessings
Chickabee
well done , well put We are all here for each other and battle on we must, their are people that are far more worse off than we are, battling cancer both adults children, theirs alot of sufferring in this world Im not belittling what we have as its hell on earth but when you see what other people are going through it does make you stop think. well on a good day at least. our battle cry is onwards upwards 1 day hopefully a cure will be find. take good care of yourselves every one and gentle hugs xxx
Morning loxie how are you today hope your not in too much pain hope you have alovely day take good care of your self gentle hugs xx
fibro can cause depression, Ive had depression for a while but having fibro has worsened the depression. push to get a referal to see a rheumatologist keep battling dont give up you will get their. gentle hugs
Hi chickabee I am in the early stages of diagnosis too. I feel like a pin cushion with all the blood tests and referrals I have had, x rays that tell me me I have O A in my spine, specialists that tell me
I have hypermobility syndrome etc, but no one has yet said I have Fibro properly! I am lucky I have a sympathetic GP who believes I have Fibro and referred me to rheumatology - but they have referred me to CMAT, and I am still waiting. There are days I despair, but here I have found lovely people who understand my pain, who keep me positive and really help me get through the bad days. Keep going, keep pushing to see the right professionals, share your problems here because guaranteed someone will have an useful suggestion for you! You are not alone, that is what I have learnt here! Onwards and upwards!! Gentle hugs!
Hiya Kaz. How are you hon? Hope you're a little better today. I'm achey today but not in total agony at least. Had a bad night's sleep for some reason, just couldnt settle and kept waking. Fed up hearing myself groaning and moaning every time i turn over 
My upper arms are aching - like I've bruised them, but not actually acute pain. My arthritic thumb joints are giving me gip today for some reason, probably the damp weather - at least I know that an anti inflamm will help the OA, trying to leave it til lunch time to take one as they upset my stomach unless I take them after food. My discomfort seems to centre round my neck, shoulders and upper arms presently, all rather stiff and crampy. Luckily the pain in my thigh and leg seems to have forgotten me for the moment, 
shhhh here's hoping it doesnt hear me lol.
zay gezunt chickabee, head held high
Hiya loxie you me both no sleep then hun I was up all night with my dog hes not good at all, My back, legs were very painful last night didnt know what to do with myself last night with the pain.Im arthritic in my right thumb I wear a hand support with thumb support it doesnt help pain wise but it keeps my thumb straight, as it keeps bending over and locking into place, trying to do anything using my hands at the min is anightmare.yesterday all i could hear was cracking in my neck and back?we are doing well between us arnt we, hope your thigh and leg pain leave you alone todaylol you take care gentle hugs
oh kaz, sorry to hear about the dog. How worrying for you. I thought he was doing better now he's on meds. Please do keep me updated about him. I hate it when pets are sick - they cant tell us what's wrong or how they are and I feel so helpless for them. My cat Alfie is getting on a bit now and I get so worried when he's off colour, thinking the worst. He's been with me for so long he's my soulmate. I'll keep everything crossed for you that he starts to really improve soon. xxxx
Hi loxie he seemed to pick up,but hes gone down again he seems to be in some sort of pain, I feel so useless as i cant help him, Hes not seeing the vet till sat, I just hope prey theirs nothing more serious going on I will keep you posted hun take care rest plenty gentle hugs xxx
chin up we are all here for you? through good days and bad? we all have bad days thinking of you gentle hugs x
