In an unending agony

I had to stop my metrothriate in march this year bcos of my surgery. Stopping it meant all my symptoms will overwhelm me. My surgery was moved 3times so i ended up having it in may 2016. My raynauds was reaĺly bad with infected sores. I was in salford royal for a week after the surgery. I requested to see the rheumatologist in salfold, to see what is meant to be done for my flare up. But no they said the will call manchester royal to inform the what i was going through. Since i am attending 2 hospital, i agreed with my manchester dr that i will come into manchester a week after my surgery admission in salfod. It didnt work out so i stayed at home for 2weeks after surgery before going to manchester for ritoximab infusion.

I had my ritoximab (1000mg) infusion in hospital and was scheduled to come back in 2weeks to complet my infusion. I had a tough couple of weeks, feeling unwell, ehausted and in pain. I went back for a blood test which is a routine b4 infusion and came back a day later for the infusion. On the day my dr came and asked how i ve been feeling since d first infusion. I told him how exhausted i am. He the checked my blood results and he said i will not be having the infusion that day brcos my white blood count has dropped lower which makes it unsafe for the administration of the infusion. I was sent for another blood test the next day. For 3 consecutive days i was going to manchester from bolton. I called last week monday for results and i was told the dr requested another blood test. I had to cancel the blood test because i could not get out of bed and my mum was also exhausted. I am trying to eat properly but am jusy unwell. I have nose bleed every week, last week i had a horrible tommy upset. My joints are so sore, the first step i make in the morning is agonizing. When i go out with my mum i have to stay in the car bcos my mobility is limited but still at the end of the day my joints are swollen my skin btw d knee and ankle are very tender, that getting in and out of bed is a hassle. I cant seat outside and watch my son play bcos my joints hurt. Yesterday i didnt go out of my house. The only thing i did was to go downstairs and seat, but still my ankles , knees and skin hurt.

I have low blood count and still i have regular nose bleeds and if dat was not enough my period started a couple of days ago. I feel dizzy, fatigued and a bad headache at the back of my head. It is just one issue after another ' when will it stop'? My fingers are getting out of control. My drs are as confused themselves all they do is trail and error. What should i do? Should i remain in bed allday to avoid my knees and ankles from swelling. Get locked up in the house for fear about haveing pain after a good night out or day out. I hope you can make sense of all my rattling now. Pls i need to compare experiences of people who have had core decompression on knee and ankle.

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  • I have not had core decompression but my ankle started mine of thought I had pulled it then spread to my knee my only suggestion have u tried any exersise like quads vmo and rotating the ankle to strengthen a bit if you do nothing its a catch 22 where it will be harder to maintain any mussles ie it will subluxation I'm struggling to walking and just do static exercise

  • I do some exercise for both knees and ankles . I may probably be more consistent with it. Going for physio nxt werk. Thanks xx

  • Hi Ijeaslike

    Sorry you are having such a bad time. A suggestion I can make is how important it is to have that blood test done!. You could be anaemic from those nosebleeds and your period, might explain some symptoms your getting. You can be visited at home to get your bloods done if your too unwell to go to your GP surgery or hospital!.

    Hope you improve soon, take care. X

  • Thank u, i am going to hospital 2mro 4 d blood text.

  • Good luck Ijeaslike.x

  • I went to the hospital on friday for the blood test, i despreatly ask to see my doctor and show him my very sore fingers. I was admitted to hospital last thursday . I am having an infusion of flolan now. I left mt bed yesterday to buy some fruits and a subway meal. It is quit a distance from my ward. Half way back i had to call 4 help. The very nice care assistants got a wheel chair and took me to my ward. I got to my bed and i was sick immediatly. I had nurses around me checking my infusion and i passed out. The good thing is that am in hospital and being taken care of.

    Xxx

    Ije

  • Hi Ijeaslike

    So sorry you are in hospital, hope the treatment helps you and your better soon. X

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