hi, i am 18 years old and currently half way through a diagnosis for hypermobility and lupus. I started having symptoms 5 and a half years ago and have had 2 rheumatiologist 4 semi diagnosis ranging from raynauds syndrome to arthritis but nothing definite! in the past year I have deteriorated massively to the point where I cannot walk unaided and now have extremely attractive walking sticks. I am in moderate to server pain everyday having to take a number of pill ( morphine tramadol hydroxychloroquine the list goes on). I have been taking H for 4 months now and the only thing I noticed has improved is the swelling. is this normal? or should i be receiving greater benefits from this medication? However i find that even being on a combination of morphine and tramadol the pain will not go away!
I have spent most of this year bed bound and get the pain all over apart from my neck! my back hips shoulders and knees and hands are hypermobile which is where i get the server pain. I also notice server weakness in all limbs cant even pick up a cuppa! this can be intermittent but makes day to day tasks very hard! also have muscle spasms but unsure as if this is due to the illness or side affects of the painkillers.
my doctors say they are "monertiering" me however they fail to notice that as every week goes pass i can do less and less and i am constantly tired and dont seem to be improving. i have many questions to ask none of which have been answered by doctors for example will improve over time or get worse? and will i be able to live a seemingly normal lifestyle in the future?
When i have a flare up it can last from a couple of days to weeks and it can make me feel paralyised for want of a better word where i cannot lift my body up as i dont have the strength, is this normal for the condition?
I hope that someone can answer my questions or offer some advice it would be much appriciated thank you for taking the time to read this
from the distressed teenager stuck in bed!