I was watching the news yesterday & they interviewed a lady with long covid. She said she will be getting referred to a consultant for Fatigue Management Therapy Programme!? Why isnt that available to RA sufferers as it's a well known symptom/side effect? Made me a bit cross cos weve all had to suffer this for years with no help/therapy???
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Fatigue & fog with RA
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Artfanatic
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I'm the same, I've lived with Chronic Fatigue Syndrome since 1994 and the NHS just left me to it, even when it became apparent certain foods weren't agreeing with me and I asked my the GP if I could go for food intolerance testing I got a resounding no, last year when I saw a consultant about my osteoporosis the consultant scratched his head, said I don't know what to do for you, see you after your next scan in a, couple of years, goodbye
That's interesting because I'm having trouble with my stomach & not sure what foods are affecting me. I had 2x endoscopies & not much found apart from gastric acid & possible Microscopic Colitis. But nobody would refer me to a dietician or anyone who could help me with food intolerences or choices! My Gastro Consultant just said cant find much, try omitting & then re-introducing food & see you in 6months! Its definitely heal thyself @mo!!
I knew I had problems with chocolate as I'd eat some, couple of hours later rush to bathroom..... Next day no choc, no mad dash to bathroom. This is back in the mid nineties, I ended up paying and having a test in a local health food shop, where it picked up that I've got big probs with chocolate and cows milk so I now use carob witch is gluten, sugar, dairy free and billed the healthy alternative to chocolate, I use goats milk, but goats cheese gives me a, migraine, and ironically I miss cheese more than chocolate
Oh thats interesting, yes Chocolate has a similar effect on me, but I love it! I'll try Carob tho. I've started using lactose free milk & it's great, no problems that I know? Hadn't considered goats milk either, will keep it in mind thanks.
Let me know how you get on with the carob..... If it helps their fondant are very very very moreish
Hi Mydexter, yes my best friend suffers terribly from Fibromyalgia, its very painful too like RA. I agree that all £'s & resources are going into Covid & everyone else is suffering. It's so tragic that some cancer patients dont get seen or get the treatment they need in time & lose they're fight with that insidious disease & they're lives too! It's so sad. My heart goes out to them. At least ours isnt immediately life threatening, which we have to be grateful for.
I agree. I have pathological fatigue, (cognitive and physical,) from a brain injury five years ago. It affects me 24/7. I haven't had anything like that offered to me.
Wow Marnie22 I'm staggered you've not had any help & therapy with you're brain injury?? It beggars belief! Hope you're coping ok?
I have now had some help after four years of fighting to get it. I have recently been under four different therapists (occupational, physiotherapist, speech and language and hearing therapist,) from the local neurological rehabilitation centre, but no one has ever even made any kind of assessment of my fatigue. The neuropsychologist I saw a couple of years ago diagnosed me with Post Traumatic Stress Disorder - but offered zero on fatigue! There is a Fatigue Management programme run near(ish) to me, but it's for Chronic Fatigue Syndrome and Multiple Sclerosis, not brain injury. Thank you. 🙂🌸
Tgat doesnt make sense? Surely it should cover any fatigue symptoms whatever reason you're suffering, not depending on you're illness or injury? Chin up & good luck..keep fighting!
Yes, I have given up trying to make sense of it! Thank you for your support. 🙂🌸
No I think you're right Scrumbler! They dont seem to be able to join up the dots!?
in reply to Artfanatic
I think they are all relatives of the post viral fatigue syndrome myself.
Its so unfair and infuriating isn't it when you aren't feeling well in yourself and it appears that the world revolves around the covid pandemic and you think what about me and what I need and want as those things are important as well.
Artfanatic in reply to
Yes but its heal thyself at the moment isnt it. Just read one post that they're dictors surgery now have an edoctor form you have to fill in online & then they'll contact you in a day or so! What happened to the continuity & sense of confidence that the Doctor knewvyoure health issues & could empathise & diagnose. I've had to attach a photo of a nail problem & also a lump on my little finger for them to diagnose from!! I've still got both & just been told to keep an eye on them!? Very reassuring...NOT!
I agree Artfanatic, but don't just sit back and be annoyed. Flag up what's happening for Long Covid sufferers to your own GP and be firm in expecting similar help!
Artfanatic in reply to
Good idea! Will do.
Yes last year I posted that many of us suffer long Rheumatoid Disease ,we get fatigue ,it takes a long time for meds to be found that work for us .We have to keep trying different meds before we are allowed the newer ones.and we also get other problems that come with the disease this is often the case with autoimmune conditions.Nor do we get the the therapy like you mention.
Yes Cal48, that's exactly right. I've had RA for 33 years & tried many medications & I'm now on my 3rd biologic, which thankfully seems to work, but I hate having to take Methotrexate as well, which NICE dictate we must! I'm not sure if it's that upsetting my stomach, but I have to take it! I've not seen a Rheumy nurse or Consultant in 2 yrs now face to face cos of Covid & I've got a hard lump under my little finger just below the 1st joint. The Rheumy nurse says it's not RA cos you dont get it in 1st joints below the nail? Really? But nobody's seen it & it could be a nodule? Or it could be osteoarthritis according to Doc, as I had to send a picture in of it. But its worrying all the same! They say you must contact them with any problems str8 away,but they wont see you! Very frustrating! Doesnt help the mental state either. What with fatigue on top, lifes pretty hard to stay positive sometimes.☹
Yes I think many feel like this .I Can the RA nurse hep?
Well I've only had telephone consultations, as I'm sure most if you had too. But I am due to see the nurse face to face next month & not sure if that will go ahead or not yet!?
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