knee pain

wynnie

hi there ,not been on for a long while but was lying in bed last night wondering who i could ask about pain and i knew straight away it would be here,
anyway here it is i have ra and it seems to be getting worse the older i get,ive tried methetrexate and hydroxychloricane and sulphasalazine ,ive just been taken off sulfa as ive come out in a rash for the second time ,im just using anti inflams and painkillers,been offered anti tnf but dont want to take it i would rather try other things first,i dont trust drugs that have no long term results out yet as they havent been out long enough,anyway thats a personal view and not what i am on to ask.
i could do with loosing a few stone but dont think thats the real reason my knees are so bad,i know it doesnt help and i will aim to loose the weight ,what i want to know is those of you that are thin enough and lucky enough to have no extra weight ,do you still get terrible knee pain?,i wake up in the night and i feel like my ankles are fractured ,im not joking ,i cant weight bear on them and ive lost count of the amount of times ive made it to the loo (or not),my knees just seem to seize up and the ankle and foot pain is terrible ,nothing helps,i do have nueromas on both feet but dont think thats causing ankle pain,if my house goes on fire im fried as it takes me ages to get downstairs ,ive to go down like a toddler and hanging onto the banister,the legs ease of a bit during the day ,but if i sit a while im back to square one,any advice out there is very welcome,i try explaining this to gp but they just up the meds which isnt the answer and doesnt really help,you all have my sympathy i read your topics etc and try and learn from them all but its frightening reading about stuff likely to happen in the future and all the probs with people being made to go back to work,that obviously arent fit,we need to do something about this,all the lazy******s in my area dont get called in and have damn all wrong with them but know how to work the system,wish i could transfer a days pain onto them,then they would know all about it,anyway im starting to whinge not a good sign thanks for listening

valval

hi you sound like your meds not right for you and just because some people very bad does not mean that you will be. we all differ and how meds ect affects us differs so do not compair your self to others as you might be lucky, although you sound in great pain the stiffness and pain not great is it when you get up. only have things mild as at the start of all this but things do differ day to day. i hope things get better for you soon val

dorcas

Hi wynnie

sorry can't answer your question about having RA, being 'skinny' and improving knee pain, as I have PA am 'cuddle-some' :oops: :roll: and got bad knees too!

I can understand your reluctance to avoid starting on anti tnfs...I felt the same way too... but eventually it was all that rheummy could offer that might help. I'm now on my third anti tnf and hoping it will control the ever advancing arther. :?

It does sound as though you at least need to be seen and your joints assessed to see where the awful pain is coming from. Maybe there are other alternatives to anti tnf that you've not tried? or new drugs?

I hope you do get some relief from your pain.. I would also sugget contacting OT for a home visit to see if there are any aids or adaptations that would help you with the stairs. I have double rails on the stairs and various other rails, seats & gadgets around the house which OT provided. Makes a big difference... so why not try that route to getting help?

Iris x

wynnie

valval wrote:

hi you sound like your meds not right for you and just because some people very bad does not mean that you will be. we all differ and how meds ect affects us differs so do not compair your self to others as you might be lucky, although you sound in great pain the stiffness and pain not great is it when you get up. only have things mild as at the start of all this but things do differ day to day. i hope things get better for you soon val

thanks val for your answer,legs sore all day,just been out the back with grandaughter and am in for a wee rest,the pain is at its worse when i relax ie bed or sitting,not much differing from day to day for me yet but im sure that with the right meds things will be better eventually ,its just getting the meds right ,thats five year now and two ops later and still no reprieve we live in hope :?

wynnie

dorcas wrote:

Hi wynnie

sorry can't answer your question about having RA, being 'skinny' and improving knee pain, as I have PA am 'cuddle-some' :oops: :roll: and got bad knees too!

I can understand your reluctance to avoid starting on anti tnfs...I felt the same way too... but eventually it was all that rheummy could offer that might help. I'm now on my third anti tnf and hoping it will control the ever advancing arther. :?

It does sound as though you at least need to be seen and your joints assessed to see where the awful pain is coming from. Maybe there are other alternatives to anti tnf that you've not tried? or new drugs?

I hope you do get some relief from your pain.. I would also sugget contacting OT for a home visit to see if there are any aids or adaptations that would help you with the stairs. I have double rails on the stairs and various other rails, seats & gadgets around the house which OT provided. Makes a big difference... so why not try that route to getting help?

Iris x

thanks iris for your advice i think im going to have to get a home visit from OT,cant get in and out a bath now and i hate showers,think i need a raised seat for the loo as well,i will need to keep plodding on till i get new meds sorted out

dorcas

Hi wynnie

I have a raised toilet seat and a frame that goes around it..... looks awful but boy it really does help and I couldn't be without them now.
The raised toilet seat did cause some laughter and posed some difficulties for my 5 and 8yr old grandsons :!: but they've also got the hang of it now.

nice that you've got your wee grandaughter with you..


Iris x