Ive spoken to the rheumatology nurse, clear as mud! I might/might not have ra, i might/might not have fibromyalgia. I might/might not be able to stop the meds. I also had another appointment through today for yet another rheumatology clinic in November, another different consultant, she didnt know why. She says im being sent to a pain clinic.
So.....tempestuous me told her i wont be going to any more clinics, i wont be taking any more drugs, i have pain relief that i take, if they cant decide whats wrong then i dont need them practicing with me! She said fine, so im on my own.
Im sure i'll be reading your future posts with interest and writing the odd post myself.
Life goes on
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Donnayb
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Please don't cancel your November appointment - just in case. I'm sorry you're having such a bumpy ride, fingers crossed that things may become clearer in time.
Dont come off you drugs without talking to your gp. . Some drugs can have withdrawal symptoms which could feel worse than you are feeling at the moment. Please take a bit of time to think about . Best wishes, i hope find a way of managing your symptoms xx
Wait a bit. Breath deeply. Start thinking. What IS wrong with you? If you don't know would it be better to find out? A new rheumatologist might help to take a fresh look at the problem and discuss with you how to manage your condition.
Although it's tempting to say to h..ll with all of you, calmer thinking might see the wisdom of trying to sort it out. Lots of us have been there, long delays, not knowing what is going on, no diagnosis, or one that changes all the time. They aren't experimenting, just trying their best in a fog to find the best way forward.
Half the problem is they dont explain, even the nurse yesterday said there was nothing on mu notes explaining so she would need to go back to the consultant, hes not going to remember! I know most medicine is trial and error sadly, i work for the nhs. Im confused and no-one seems to be even trying to explain, whenever i ask anything i get moved onto someone else and i have to start again.
Im not prepared to jeep taking the incredibly toxic drugs if they arent the correct drugs for my needs, which is what the consultant said. But they want me to carry on until i see the next person in November who will then take months to decide on something else. This new consultant could have made a decision but chose to move me again, its all just shrugging you off to the next person and for the moment ive had enough.
Yes im stroppy and very reactive and i will calm down but for now im in some control of my life and my 30th wedding anniversary is in a couple of weeks so i'll enjoy my little holiday and then regroup
You have all the reason to be upset. This automatic medication with toxic meds to everything that resambles RA, even when the inflammation and other blood indicators are normal is in my opinion as well questionable. The lack of thorough examination of possible other deficiencies and dysfunctions before starting aggressive medication, feels very wrong☹️
If you have decided to drop the meds perhaps you would try a antiinflammatory diet and LDN. This way you can be in control yourself and have less stress from fighting with NHS. Dietary modifications as a form of treatment to decrease inflammation has helped thousands. LDN has shown to help with pain quite effectively, do look into it ldnresearchtrust.org. It's quite important to have a plan B and not just hope the illness will disappear by itself. Good luck👍🏻
I am so sorry you're having such a rough go of it. Be good to yourself. No one should ever have to live in pain and sometimes some healthcare professionals look at us like a number instead of as a person who is experiencing very real pain and even suffering. I have literally been through a dozen specialists who misdiagnosed or incompletely diagnosed me until I found the one who literally examined me one time and immediately rattled off a list of my issues, helped me prioritize them and from there started treating them from the top down. It was life changing.
But as I said before, be good to yourself. Do the things that make you feel even the slightest bit better. There's definitely something to be said for eating clean and there's lots of information out there about that. Everyone is different just as everyone metabolizes medications differently. I can tell you from my experience that if I avoid gluten and sugar I generally feel better but that's just me.
Take good care and congratulations on your 30th anniversary! That is amazing! I hope you have a happy and wonderful celebration!
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Stopping meds except pain relief.
Had to stop my meds again
Advice re stopping meds on week of covid vaccine!
