Tired of being exhausted

I had an appointment with my gp about my ankle and knees which get swollen when i walk. I also showed him the lumps on all my joints. He said that it is inflammation of the soft tissues. My white blood count is really low as a result my 2nd retoximab infusion was canceled. I asked my gp what i should do hoping he will prescribe some immunity boasters. No, he said i should rest and not push myself, eat healthy foods. I am too exhausted to eat. I get tired in the middle of a meal. I promised to take my son swimming this half term but i couldnt. Tuesday, wensday and thursday i was in and out of manchester royal infirmary. My son had to accompany me on two occassions. I had to use a taxi bcos i am too tired to go from bus to train. I am so restless and unwell, i have a discomforting and streachy feeling in my arm. I try to eat healthy, i ve a fruit smoothy in d morning, beans or unripe plantain with spinach for lunch and for supper fruits and letuse. I need a break from being unwell. My 4yr old encourages me to walk without d aid of my stick. He even takes d stick from me saying ' u can do it mummy'. I am completly unable to care 4 myself. My mum take care of me and she had to give up work to takecare of me and my son. Am sorry if u cant understand dis post it is so disoriented and that is my present state of mind (disoriented).


4 Replies

  • Are you under the care of a rheumatologist? It sounds like you need to be seen soon. Can you call the clinic or get your GP to contact them?

  • Yeah thats the problem i have seen the rheumy. I had an appointment for the 2nd dose of ritoximab infusion. I had a blood test a day before. On d D-day my rheumy registra was disappointed that my white cell count has gone lower. My entire system is inflammed. He suggested having another infusion which works like iloprost. I ve a bad reaction from iloprost. He rescheduled another blood test which i did on thursday. I will call them on monday i know what they decieded. My entire body is on a red alert. I having frequent nose bleed my raynauds are worse, i am exhaused, even haveing a meal is exhausting.

  • Sorry to hear the meds you have tried have not worked out. It does seem as though your rheumotology team is making an effort to get you on the right track. It took me about 3 yrs to get on the med that worked for me but during those 3 years I felt like I would never feel better again. Unfortunately with lupus it is trial and error for most of us but hopefully you will find something that works soon.

  • I have not been dis unwell continously for this long. Finding painful lump in my joints and my gp called it soft tissue inflammation. I ve been in bed for more than a week. My mum gives me a wash in my bed. Shower is a thing of d past bcos my shower space in small and the chair in it is too low. It was difficult to use before surgery and it is even more difficult after my surgery. I have requested for a walk in shower.My son has to stay in doors and watch tv instead of going to play in d park this half term. My mum is exhausted but she trys to hide it, i know she is spent. I told God a few nights ago to pls have mercy on me, help me and heal me. My mum trys to encourage me when i get frustrated by my drs she says 'ije it is only God that can heal you, the drs just try their luck. She will always remind me of miracles that has happened to me when i was 10. A tumor in my small intestine disappeared miraclously. So she will say God has d final say not d drs. Then i tell God 'what are u waiting for to heal me'.


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