I still haven't been in touch with my GP. But I did have a telephone consult with the Specialist Nurse. I asked if I could restart the biologic but she agreed with the consultant. I asked about my inflamatory markers and was told as per usual that it could be because of my weight. I told her about the extra pain that had started and was told it could be just arthritis. She then spent time trying to convince me to go back to the pain clinic. The last time they sent me for physio which didn't do anything and was told again to loose weight. I tried to tell her my fears but she just talked over me. It was left with her telling me she would speak to their physio. The last time I saw him he couldn't believe how long it had been since I filled out the bath score and that this score needed to be brought down. Anyway she said she would ring me last Wednesday to discuss if he thinks the pain clinic is a good idea. I phoned her but was told she would send me a date for another phone consult. In the meantime I'm left in tremendous pain. My house is filthy but I just can't get things done without sitting down after about 5 minutes because of pain. So I told the dog Christmas was cancelled and I don't have the energy to put up any decorations. It's not as if I get any visitors apart from his walker. Thank you for your responses it cheers me to know that someone cares.
Update: I still haven't been in touch with my GP. But I... - NRAS
Update
Oh my darling i wish there was something i could say which would ease your pain. For a start can you get a cleaner to do your housework. We have a cleaner who comes for three hours a week and we couldn't be without her now. Have another go at the drs surgery and if your nder the hospital ring them as well and tell them how bad you are. HUgs.xxxx
Hello there WildethingI just had to say something about your pretty disgraceful treatment as I have suffered with obesity all my life due to being a diet failure...there is quite a difference to raised inflammatory markers due to pain or 'just' being big in my experience. I just had a few months of blood tests etc due to pain, the true cause still not completely found but am better now but hey I'm still big he he .and guess what, my inflammatory markers are down! This blaming everything on weight is just the easy way out , keep nagging them they owe you better answers! Good luck and gentle hug .
That sounds really unsatisfactory I’m sorry.
Phone your GP first thing. You’ll feel better having talked to someone who listens to you.
HelloSo sorry that you are not getting the support you need. If you want to speak to somebody you can always call our Information and Support Team at NRAS on 0800 298 7650 or by email at helpline@nras.org.uk.
The team can offer support on a number of topics including help to manage pain (alongside medication) and emotions.
Lynne
I'll send an email as I'm no good on the telephone. Thank you for the idea I know myself I need some help normally I won't bother anyone and just try and manage. I'm my mother's daughter she was just the same but she passed away before getting help.
Sounds similar to my rheumatologist, who is lazy and refuses to examine any joints unless I’ve seen GP 1st. You mentioned bath scores so I assume you have AS rather than RA. My rheumy used to have a Nass physio who set up his excellent clinic, and had all scores & measurements each visit. Now he asks me 2 questions and invents a score from that. I had to push for my measurements as I’d gone 2yrs without any and knew my chest was worse. Eventually went to a hospital 35 mile away to get them done. My chest expansion had gone from 3.5 to 0.8cm, and everything else was worse. My basdi and basfi score were worse, but he refuses to change my biologic, because my bloods are fine. Nass state 50% of AS patients always have normal bloods, which I have to remind him of each time.You are entitled to ask for a 2nd opinion from another rheumatologist, which could be at another hospital if you prefer. Unfortunately I have to stay local because of the funding for biologics. I’ve already seen the other one who is worse than the current one so I’m stuck. I’m classed as obese with a bmi of 34 and markers are always normal, it’s a lousy excuse, keep pushing 🤗
Quiet polite nagging needed? Keep phoning I think. No, I don't agree that it's due to my weight. No, I have a lot of pain, it's limiting what I can do. I need some help with this.
oh bless you Wildething, its not fair, you need to be seen by someone more caring,can you ask to see or speak to someone else?if I lived nearer I would visit and help you put your decoratition up.
I am sending you loads of love and big cyber hugs xxxxxxxxxxxx
Fatigue update
PIP Medical
Update on hip drama!
