Struggled in severe pain for along time trying to get someone to listen and take me serious.

clrdwns1982

Hey all my name is Claire and this is my story. I have a diagnosed mental illness and have been on heavy duty anti psychotic meds and in 2019 i was put on a new drug called rispiridrone at a high dose my psychiatrist failed to mention that there was alot of side effects one in particular was that long term use of rispiridrone causes a loss of calcium in your joints and can effect the cartilage causing possible joint pain and issues i was on this drug for about 18 months. Mean while about a year on this drug I started suffering intermittent severe pain in my body including my joints elbows ankles wrists but the worst was my knees my hips and my lower back when it flared up it was like i couldnt move and could barely walk every time i spoke to my gp at the time couldn't understand why this was happening it was blamed on my weight and the fact i never left the house because of my mental condition I was basically treated like a pain killer seeker because i kept saying that co-codomol wasnt helping with the pain no one listened this went on for a further 6 months till i got to the point where the pain was there all the time and my mobility was impaired i was experienceing knee locking and collapsing instability and constant pain when walking crunching clicking deformity of my knees. I reached out to my psychiatrist and told him what was happening and that no one knew why he told me that it could have been the medication and so he changed it and i swapped GP surgery. They dismissed the medication being responsible but after constant calls and chasing they did refer me for an X-ray and finally about a month ago I got the results which is Early onset degenerative damage in both my knees that they would expect to see this detereation in a much older person about 55 to 65 years old but its nothing to worry about and my pain meds where put on repeat. I am in severe pain from the minute i wake up my sleep is affected i need help to have a bath or shower i cannot cook a meal without sitting down the pain is spreading to my hips and lower back and i dont go outside anymore i depend on carers for pretty much everything and my pain management is not working anymore i have no treatment plan or input from other services in place from my GP and I am fighting the benefits agency to get the correct award so i can at least afford to pay for help i need i have no clue what to do next or how to ask for stronger pain and anti inflamatory medication to at least dull the pain without coming across as though im just after drugs im sorry for the long winded story but i thought i should let you understand my struggles and if you can give me any advice or information on getting the right help would be life changing for me.

Thanks for listening and i hope you can help

Poppyjane

Hello @clrdwns1982 welcome to the online community

Claire we are here to listen and support you whilst you struggle with your condition and search for the right benefits. It sounds as though this struggle has continued for a long time and that you now have to rely on the support of carers to maintain your day to day living.

I attach some links which I hope will help you not only with the pain you are suffering but also some other agencies who might be able to assist you in your search for financial assistance.

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

www.carersuk.org

www.gov.uk/disability-benefits-helpline

www.turn2us.org.uk

Meanwhile I hope some of our members will be able to share their experiences with you. We have a variety of sections on the community and when you get a chance to look round do join in with us. We look forward to hearing from you again soon.

Take care

Poppyjane

clrdwns1982

Thank you poppyjane It's nice to know I'm not alone which is how i have felt for a long time. I especially feel for my partner and fulltime carer Andrea she is having to do things for me that no partner should have too not to mention dealing with my mental illness on top i have tried to get a social worker but was told at time My condition wasnt serious enough and i would need to pay for carers. My psychiatrist is useless I've asked for a CPN many times but it's almost like he is going through the motions he forgets who i am and doesn't listen to me my experience with CMHT and also with GP's not taking you serious or listening is diplorable. i am house bound due to agoraphobia and also mobility issues and i have to jump through hoops for everything. My PIP review took the decision maker almost a year to make a decision on my review award which was handed back May 2021 but i was only awarded it from the day the decision was made. Meanwhile during all that time i was going through every issue written down on that form on a daily basis but their award was only given from March 2022 i asked for a reconsideration because i had been suffering while the issues during the decision making time it was denied. They awarded me standard mobility but i believe i should be getting enhanced mobility so i have had to now do another review form to tell them of my diagnosis of arthritis and mediction as i told them my needs had changed they tried to scare me off saying that i could lose my award i have or it could be lowered and was i sure i wanted to proceed and i replied ofcourse i do my condition is worse so i know need to waitttttttt again to find out if they will finally give me the award im entitled to totally bricking it!!!!