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Thread: Glad to be diagnosed

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    Thumbs up Glad to be diagnosed

    It was a year ago at Christmas when I developed flu like symptoms, sitting on top of the fire shivering whilst everyone else was stripping off, and the wallpaper was peeling off the walls due to the heat! I slowly got worse with severe attacks of joint pain all over my body but principly in the fingers. It was worse when I returned from work and would get to the point where my wife would have to help me upstairs and undress me, the pain was too bad to push a button thru a button hole. She would also have to pop the pain killers and sleeping tablets out of the foil as this was too much to bear. Surprisingly come the morning I would have a hot shower and then go off to work until it would start again in the afternoon. I was going downhill and saw numerous consultants who diagnosed my condition as just a virus. I had been to visit my parents in Busselton, West Australia just a few months before and my brother, who lives in Perth, and I had recaptured our youth, bombing into muddy pools in the woods. Yes I was convinced I had picked up something exotic! We booked a week in sunny Portugal just after my doctor diagnosed a lung infection. We hoped the sunshine and 'getting away from it all' would be the best medecine. Sadly I spent the week in bed, so tired that I could only walk very slowly and very limited distance. I started to cough up blood and had to sit up in bed all night as the cough racked my body. Getting home was a trial as I suddenly realised how many stairs there were in the airport apart from getting on the plane! I saw another consultant who sent off some more blood tests and fortunately some bright spark at St BArts Hospital in London picked up that I was suffering from WG (Boy do I owe him a drink!) I was rushed into hospital and once again the gods were smiling on me as I was admitted into Addenbrookes, a fantastic hospital near Cambridge. Dr Jayne looked after me and I see him and his staff every month for a check up. I am on a world wide trial of Mycophenolate Mofitil which appears to be doing the trick. Of course I am also on Prednisolone (Watch the waistline go south!) When I was discharged from hospital, I felt very weak and couldnt walk upstairs or even drive to the nearest shop (500 yards) for a packet of chocky biscuits.. crikey how bad could it get. Still I set myself targets, the first one was when I was browsing thru the sunday papers and saw that my 'hero' Neil Young was playing a festival in Kent. His only British appearance. Came the day, and of cpourse being England, it was raining. Still we stood in a field for hours and got home about 4 in the morning. I did all the driving and then went to work as the alarm went at 6am! Not much was done that day but I had proved to myself that by listening to my body, and resting when necessary, I could still live a fairly normal life. My final target for 2008 was to go surfing in Cornwall. I have always loved the sea and spent many happy holidays with friends at surf village, Skewjack near Lands End. I did rather resemble a stuffed whale (damm those steroids) as I struggled into my wet suit and dragged my board out into some of the biggest surf I have ever seen in the UK. Sadly I could not stand up, too fat and too old but I felt warm inside as I had at least 'given it a go' The hospital are delighted in my progress but I know that I have avery long way to go yet. Reading some of the cooments on this web site have made me realise how lucky I have been. I have developed a much more positive attitude now, and at 57 years of age am fortunate to have seen my two children grow up and leave home. My wife works as well as me and so I guess we dont have too much to complain about. I would be delighted to communicate with anyone out there and expand my knowledge of this illness which has us all in its grasp. I like to think I may have just loosened the grip of a couple of its fingers!

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    Hi Geoff,
    So nice to meet you. It sounds like you're through the worst of it maybe? I sure hope so. You're the first person who's described the same pattern of joint pain I had-- torture at night, better by morning, cranking back up in the afternoon. My mornings weren't fine like yours, but until the last couple months before diagnosis I could still work. My functioning time was 10a-2p each day. Before or after that was non-negotiable. I began to fear 8p every night, since that's when it was all over. Have you ever heard an explanation? My docs said I was crazy. I think I'll ask my JHU rheumy this week.

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    hi geoff.
    i started with similar symptoms to you except it was muscular pain instead of joint with me.that was xmas 2006.i also tried mycophenolate but had to come of it after suffering side affects.anyway two years older and three stone heavier i still suffer from severe fatigue when attempting to do the simplest of tasks that my 6 year old grandson would do without a second thought.it's good that you are progressing well.keep us informed and come back soon.
    john

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    Hi Sangye,
    Pleased to report that the joint pain has gone completly, the only reminder is the tingling to the edges of my feet where I am told I have suffered some nerve damage. I believe the nerves will grow back in time. I didnt receive any explanantion as to why I was experiencing the joint pain at such precise time frames.

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    Awesome! Wishing your neurons happy healing.

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    Default joint pain

    Hi Geoff, had same joint pain but combined with muscle pain. Couldn't get out of bed, but once I did and walked about it receded slightly so that I could function. But then by 7 to 8 pm it got so bad that no matter what I did I could hardly stand. if I just sat or lay down without movement I was OK. My doc diagnosed me with Polymyalgia Rheumatica, my ear as just an infection. I was treated with prednisone at low dosage for a few months until a trip to neurologist because of dropped left foot and neuropathy and his suggestion that I had vasculitis. Ha, with my husband and all our friends bing doctors, no one even thought of Wegener's, even now they all read up on it just to get familiar so obscure is our little diseases. This is my second time on cyclophosphamide and once again its doing the trick. Besides having loooooow lymphs, everything else seems back to normal. Just ANCA is 45. But because last time I wa on cyclo 6 months and had the same good results, was taken off cyclo and tailspinned back within a month, this time I will probably stay on for a year. bummer.
    I too look like a whale, from 160lb to 210 in a few months. Ugh. My vanity suffers and I still can't recognize myself in the mirror. And I say to all fat people please stop eating and get a healthier lifestyle. I know that my disease is making me this tired and ungainly, but being this fat is probably 50% of why I huff and puff with everything I do. I am lucky that I live in Canada with our greath health care, that I own my business have a great partner and work full time but can take off for doc appointment or just because at any time. And I am grateful that my symptoms while painful are nowhere as bad as many of my fellow sufferers here.
    Last edited by jola57; 02-04-2009 at 07:39 PM.
    Jolanta

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    Talking

    Hi Jola, Forgot to say that apart from the joint pain, I had this amazing feeling in my upper arm as if someone was pulling tight on a lassoo made of piano wire! Glad to say thars gone for now. How is cyclophosphamide? do you have any side effects? I am on Mycophenolate Mofitil (MMF) and have very wierd dreams which if I have been able to sleep leave me exhausted come the morning. I take sleeping tablets on 2 nights during the week to get some quality sleep. I also have some mood swings (ask my wife!) which have put me in some strange 'places'. I practise Reiki and have had some counselling and feel ontop of the situation. Had to chuckle seeing your picture of the snow. WE have had a 'dusting' of the white stuff here in the UK and the whole country has ground to a halt! Best WIshes, Geoff
    Last edited by Geoff; 02-06-2009 at 06:45 AM.

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    Default weird dreams

    Ah, dreams, for most part I don't remember but thats good since they are the weirderst dreams ever. Cyclo is OK, I am lucky and have no side effects, except for curly hair, a bonus, no need for a perm now.
    I have always been a happy person and so it is now, a bit shorter on temper, but no mood swings. Only sleepy and tired from noon on. Weight gain is my biggest problem and I wish I could loose some of it now. The snow pic is pre weight gain. Yes I heard how snowed in you were, and how everything ground to a stop.
    Jolanta

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    I just read this Geoff. I can't say I had any joint pains, all of my pain was in my head and ears, but if I remember correctly, the time frames were the same as yours. I would wake up relatively ok, and it would ramp up during the day and would get crazy in the evening, and insane during the night. This got progressively worse until I just couldn't sleep at night and the days became part of the night so I would hurt all the time (this last part only lasted a couple of weeks at most as I ended up going to emergency three times - the third being the magic visit that got me my dream team and diagnosis). It's an interesting correlation. I wonder if other people's symptoms worked on the same schedule, and if there is a physiological reason for the correlation.

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    My joint pain followed the same weird schedule. I began to dread the evening and night-time, since I'd (literally) spend them them screaming in pain. I don't know of any physiological reason for it. In Eastern medicine, the liver meridian is most active in the middle of the night, so if it's a question of liver irritability (eg toxins) then symptoms would be more active at that time.

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