hi bit of a long story but in jan/feb 2016 noticed that I was having trouble lifting my feet to put my shoes on get dressed etc and was experiencing muscle pain at the back of my knees
this was also affecting my sitting posture especially when driving as my knees would become very sore but once I was standing it wasn't too bad other than if I raised my legs as aforementioned
this went on for 2-3 weeks and I hoped that it would clear but it was getting worse and I was now suffering extreme cramp in both legs when both sitting and worse still lying down very very painful
went to the drs who gave me something for the cramp along with cocodamol for my knee pains which by now was swelling in my right knee.
although the cramp issue finally settled I was now experiencing severe pain at the back of both knees the swelling continued in my right knee and I could barely raise either leg it was getting harder to drive my car and I couldn't get comfortable sitting or lying down
went back to the drs who reluctantly put me on a course of tramadol but stated he didn't want me on them for too long and also changed the cocodamol for zapain as I was having problem taking the cocodamol (bitter taste and large tablets)
getting out of bed in the mornings was becoming increasingly difficult and was taking 5-10 minutes in the morning to get going as they were very stiff and painful tried getting back to see my dr but this in itself was becoming extremely diffulcult as there was 2-3 weeks waiting time even for emergencies
the swelling and pain was becoming more intense and I ended up at the local a+e department( in fact 3 times)first time I was referred back to my doctors to make an appointment with the orphopeadics, the 2nd time xrays revealed no gap between upper and lower leg and the 3rd had to call for an ambulance as was in so much pain could,nt drive, sit and absolute agony whilst at the hospital the duty dr at a+e got the orphopeadic department to take a look at my right knee and they drew 60ml of fluid out which they sent off for analaysis they also told me that they were going to take me in the following week for a knee flush and endoscopy to see what was going on they also gave me liquid morphine to ease the pain took my bloods and told me to continue with the medication the dr had prescribed. A week later I went to the hospital for my op on a Wednesday tea-time and was scheduled to have the op Thursday morning however I was and had been in so much pain that I had been unable to sit for more than a few minutes at a time the pain at the back of my knees felt like all the muscles/tendons etc were being gripped extremely hard and strangely it somehow was easier for me to actually stand and pace(shuffle) around the living room sitting or was driving was out of the question I was reduced to tears and this continued even at the hospital when I arrived I couldn't sit or lay on the bed they administered several doses of morphine as well as other painkillers/anti inflamatories etc and it took quite some time for them to kick in eventually they did around about 11.30 at night I finally managed to fall asleep but awoke 40 minutes later needing the toilet suddenly I found that I couldn't move at all the stiffness and pain was everywhere as well as my legs it was in my groin my hips my hands, arms, shoulders everywhere I tried moving my legs but I could,nt not an inch, more morphine, blood tests and painkillers I must have finally dozed off some time later and awoke later feeling somewhat high and whoosy from the meds and was prepped for my op
after the op I felt great hardly any pain was able to move albeit a bit sore and was allowed home a few days later, was given an appointment for out-patients with orphopeadic but whilst at home the pains slowly started to come back and by the time I got to see the orpho I once again was experiencing pain at the back of my legs /knees hips groin shoulders and hands again unable to drive I had to get my brother to take me to the hospital which is roughly 3 miles away but would have to stop once or twice en route and stand best I could until the pain/agony subsided. The orphopeadic told me that they had suspected gout but after analysis of the fluid that they had taken from my knee they had ruled that out they took more bloods and suspected that it was some form of blood disease and ruled out 2-3 other conditions in between each visit until finally deciding that I had pmr and referring me to the rheumatologists. they put me on a course of prednisolone 15mg omeprazole to protect my stomach and was told to continue with my drs meds It took around 9 days before the pred started to help and I spent most of that time in bed hardly able to move I felt constantly tired and lethargic and I recall one incident when I was unable to get up from the toilet for over 10 minutes the pain in my shoulders and legs was excruciating and I was in floods of tears (not very manly)
finally got to see the rheumy in august and he was angry that orpho had diagnosed pmr stating they had no right he was unhappy that I was on preds and wanted me off them asap reducing by 2.5 mg a week. he felt that it wasn't pmr and was possibly inflammatory arthritis and he also wanted me to start a course of methotrexate once I had seen the nurse I was started on 10mg of metho once a week (tablet form) rising to 15mg after 4 weeks. Whilst taking the 10mg I was fine but reducing the pred was causing problems I was back at work by now and as a chef I work split shifts the muscles at the back of my legs were starting to tighten up again and though nowhere as bad as before was becoming worse I also found that I was getting very sleepy whilst driving home in the afternoon and was struggling to keep my eyes open and also struggled with the glare of car headlights when returning to work at tea-time. On reducing the pred to 10mg the tightness/pain in my legs/knees was getting worse although I no longer had any pain in my shoulders or hands and just occasionally in my groin /hips but only moderate.
I rang the rheumy nurse who after speaking to the rheumy said that perhaps I had been told to reduce too quickly and suggested that I go back to 15mg and to reduce at the rate of 1mg per month and this worked I was even able to go away on holiday to mexico with no problems whatsoever. Meanwhile increasing the metho to 15mg I started feeling very unwell 24 hours later and would feel like this for three to four days it made me nauseas and extremely lethargic and my eyes felt really sore again rang the nurse and was told to reduce to 10mg pending appointment with nurse to show me how to self administer injection of metho rather than tablet form
Meanwhile have since reduced preds to 10mg but pain in knee and muscles at back of legs getting bad once again once I had tapered down to 13mg and has got slightly worse with each 1mg reduction. Saw the rheumy today for 2nd time and he wants me to continue with the pred reduction and the injected methotrexate on examining my knees he acknowledged some swelling returning in my right knee and is now arranging for me to have injections in both knees (presumably cortisone) he still says that its not pmr but seemed a bit evasive when I asked what it was saying that it was an inflammatory condition . I,m really quite concerned now as I feel that this past year I have been fobbed off with so many things and I still don't know whats going on, starting from not being able to get in to see the drs when theres a problem (ive now changed surgery and they are brilliant) to be told its one thing and then another and another I,m scared to go back to where I was pain wise but I can feel this gradually returning and that's a place I don't want to be, unable to sit ,drive or even walk the dog I,m worried about this metho injections as well although im prepared to give it a try but the 15mg made me very unwell and the reduced 10mg doesn't seem to have done anything I think I remember the the rheumy saying that it would help me come off the steroids but that clearly is not the case (maybe 10mg isn't enough ) although I persevered with 15mg for 8 weeks
I came across this site last year when looking up what polymyalgia was as I had never heard of it ive been meaning to post on here for sometime but was afraid that it was going to be quite a big post and so it has. If you have taken the time to read this thank you so much I feel so much better just for being able to share my experience the problem being that when someone has such a life changing condition there aren't many people out there that you can turn to for help ,advise or just a general enquiry since signing up its reassuring to find similar (or not in my case pmr ?) sympathetic people who not only listen but offer good sound advice too so many thanks to you all and keep up the good work