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Date: 24.10.2013
From: gail wingrave

Subject: Fatigue in Rheumatoid Arthritis

Does anyone know any treatment for Fatigue in Rheumatoid Arthritis.I have asked the Doctors but they seem to side-step the question.
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Date: 24.10.2013
From: Colin W

Subject: Re: Fatigue in Rheumatoid Arthritis

hi gail

it goes with it , some of us take a mild anti depressant , it helps with sleep & fatigue , be careful with over the counter tablets because they can interact with drugs like methotrexate

your GP could give you amitriptyline which is the normal drug they give but in very low dose like 10/20mg
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Date: 24.10.2013
From: gai l wingravel

Subject: Re: Fatigue in Rheumatoid Arthritis

Hi Colin,
Thanks for your reply. I realise that it is caused by RA but why can it not be treated separately or why is it never talked about by doctors? I am of the opinion that they don't know how. I wonder if acupuncture would help-but rather expensive. gail
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Date: 24.10.2013
From: Colin W

Subject: Re: Fatigue in Rheumatoid Arthritis

hi Gail , looked up National Rheumatiod Arthritis Society website for fatigue , Arthritis Reaserch UK has some information about it

myself when I first had RA realy suffered with it but found St.John Wort helped but it interacts with Mtx so used Rhodiola for last 15 years , they use Amitriptyline & its used for Chronic Fatigue & Fybromyalgia the same way which is 10-20% of the normal dose for depression

checkout NRAS website on this link , it includes link to AR UK site
http://www.nras.org.uk/about_rheumatoid_arthritis/faqs/fatigue.aspx
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Date: 24.10.2013
From: Chris

Subject: Re: Fatigue in Rheumatoid Arthritis

Hey Gail,
to me this is one of the hardest things to cope with. I feel for ya hun.
Inflammation causes fatigue, whether in RA or a host of other diseases.

Colin's advice is gold as always.

Without knowing what drugs you are on i can't recommend anything (there's lots and lots - and you should be able to mix and match).
For instance, i am currently on:
Methotrexate (for the immune system)
Arcoxia (for inflammation)
Pregabalin (for pain and nerve damage)

also occasionally:
paracetamol (pain)
zopiclone (sleep) - really helps with pain too.
antihistamine (itching/sleep)

But a way to pin down your GP is to get them to confirm what i've just said (inflammation causes fatigue) and then ask if there is anything else you can take to supplement your current medication to help with the inflammation. That is something they shouldn't be able to sidestep.
If they continue to sidestep, I'd suggest you have a particularly crap GP and get another one. Quickly - it's your life.
Personally i spent years in the 'wilderness' not realising the connection. I was always told i was lazy!

Here's a link to the Arthritis Research UK page colin mentioned.
http://www.arthritisresearchuk.org/arthritis-information/arthritis-and-daily-life/fatigue/causes-of-fatigue.aspx

Best of luck.
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Date: 31.10.2013
From: gail wingrave

Subject: Re: Fatigue in Rheumatoid Arthritis

hi colin, thanks for info.I will try St John's Wort. None of the meds I have been on has worked thus far over a 2yr period(4). Hopefully when they find one that works the fatigue will lessen. I will look up the websites you suggested. Thanks again, gail
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Date: 31.10.2013
From: gail wingrave

Subject: Re: Fatigue in Rheumatoid Arthritis

Hi Chris, Thank you so much for all the info.Yes, I shall be asking questions at my next hospital appt. I have just started Humira (a biologic)having previously been on Methatrexate, leflunamide, cimzia (Another biologic) and steroids for a month cover. None of them worked at all and I almost lost my marbles on steroids but the hospital are in charge of all my meds not my GP and I shall be better informed on my next visit- next year!!!
I have noted all you and Colin said and thank you both for your support, gail
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Date: 31.10.2013
From: Chris

Subject: Re: Fatigue in Rheumatoid Arthritis

No problem Gail, best of luck to you. The biologic should help a lot with the inflammation.

Are you using Arcoxia, or any type of NSAID? You might be able to add this or similar and get some immediate relief. Ask your GP, or if you prefer phone up your consultant's secretary or nurse and tell them your problems. You shouldn't have to wait till next year to sort out simple meds.

I spent many years thinking that the hospital was in charge of my meds and didn't use my GP. This was a mistake. I would urge you to build a relationship with your GP, or if they're useless get one more sympathetic to immuno-disorders. It's what they are there for.

You could even talk to your pharmacist, they can check whether an NSAID is appropriate for you.

Again good luck,
Double check any advice with a health professional, I can only speak from my experience.
Best wishes,
Chris
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Date: 02.11.2013
From: gail wingrave

Subject: Re: Fatigue in Rheumatoid Arthritis

Hi Chris,
Thank you once again. I have spent some time looking at the web-sites but find this forum where you can contact others just as valuable.

Actually my GP is pretty good. I don't go enough
that's the problem and don't ask. Nor do I like taking meds. because strange things always seem to happen. For instance when I was taking Leflunomide a whole load of new nodules grew-loads on back and front of both legs. My Rheumatologist was aghast and sent me to Dermatology to have biopsies to ascertain if these were rheumatoid nodules. They were, they sent me a copy of the letter. I was taken off it-it hadn't helped the inflammation in any case. All the nodules subsequently disappeared.!!! I was laughing so much when I told my sister that I had to repeat it 3times.

So, as this craziness continued with 3 other meds I decided to just have one at a time and when this one works perhaps put something else in.

But what about you Chris, what meds do you take and do they work? Can you tell me, what is it like to have one that works?
Thank you and best wishes,Gail
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Date: 02.11.2013
From: Chris

Subject: Re: Fatigue in Rheumatoid Arthritis

Hey Gail,
I've had my fair share of problems with meds too. I think some lucky ones manage to get away with it, but i reckon i'm just a lightweight!

I listed most of the drugs i am on above...
That's my current list, although they do change as they become ineffectual or the side effects become too much.

The NSAID (non-steroid anti-inflammatory drugs) are generally considered to be the front line for inflammation control. You can get weak ones like ibuprofen across the counter. A lot of doctors offer diclofenac as they have had good results with it in the past, however it does come with side effects. The newer arcoxia (etoricoxib) - the one i'm on, is a 'safer' drug to use - however all drugs come with risks, i haven't had any major side-effects from it yet. It's designed for long term arthritis use. If you're not on a NSAID without knowing your history etc, it would seem to me it might well give you some immediate relief and i suggest you read up about it and then speak to a health professional about it.

The problem with assuming the hospital are in charge of your drugs is they often don't have the systems in place to see what you are on, they can only ask you, and might assume that you are on drugs that you aren't or that you have tried them and they haven't worked for whatever reason. Have they explicitly said they are in charge of all your meds?

What's it like to have one work....
I remember when i had my first biologic - etanercept, seems like a distant memory now. I was doing a chronic pain course at a buddhist centre - a mindfulness course. The mindfulness was excellent and gave me renewed energy, then the etanercept kicked in.
All of a sudden i was running up the side of Devils Dyke (near brighton) 3 times a week with the dog. It was simply amazing, like a rocket had gone off inside me!
Anyway the etanercept failed after 9 months, just like the others have for me. So i'm back on the poisonous Methotrexate, i'm staying on a low dose this time though, i know i can't handle the side effects, and any higher my lungs get riddled with infections. So i'm just dealing with slow deterioration at the mo, although it takes 3 months to kick in properly, so maybe this dose will be enough.

If you are struggling with sleep, i would also suggest you speak to someone about zopiclone - it's not the old 'mothers little helper' type of sleeping pill. A good nights rest helps pain and everything.

I spent years like you, avoiding the GP, i only saw them for chest infections, never saw them about my chronic health condition, assuming that the hospital had it covered. The truth is neither of them have it covered, my health is my responsibility, i'd urge you to slowly take the reins for yourself too, the doctors are here to advise us, the decisions are ours to make. The past few years i have tried to educate myself in order to take that responsibility. It's surprisingly easy, for instance GP's get one weeks training in dermatology, which is often taken as a week off, so i'm more highly trained in psoriasis than probably 99% of GP's in this country. This doesn't mean i have a closed mind to their advice though, there are occasional gems to be unearthed.
But it's annoying to suffer permanent damage due to a mistake by a busy health professional.
I'm sorry if i've been way off base with my advice, and for the wall of text! Hard on a fatigued brain..
i wish you all the best,
Chris
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Date: 06.11.2013
From: gail wingrave

Subject: Re: Fatigue in Rheumatoid Arthritis

Hi Chris,
Having just written a long reply to your e-mail I
pressed the wrong button and lost it. So here goes again.

Thank you for your reply and please do not apologise for the 'wall of text'- I love it and so much to think about. I don't know anyone who has RA so talking to someone like you is wonderful for me. Of course you told me of the meds you were on-sorry- I remembered that once I had sent my message. Not only that, I had written the meds down in my rheumatology notebook.!!

Do you know of any treatment for psoriasis? I have it. It started on one heel at about the same time as RA and spread to my other heel. When I told both the Rheumatologist and my GP they noted it but offered no treatment. I realised later I should have asked. Have talked to a couple of pharmacists but what they have has sulphur in to which I am allergic. Yes, I am realising quickly that it is my responsibility and thank you for helping with that.

Good luck with methotrexate too. I was started on this and on reaching the max. dose threw the whole lot up-like projectile vomiting. An hour later the post arrived with a letter from my GP asking me to come in urgently as the GFR was going down. This, as you probably know is the Glomerular Filtration Rate- the rate at which the kidney filters fluids. As the kidney is mainly a filer to continue on would presumably cause kidney failure.

I thought it was marvellous that my body had protected me from a toxic substance but I'm not sure the medics saw it that way.

You sound as though you have been through the mill with RA. How long have you had it? Mine was diagnosed 2 yrs ago and I spent over a year in a state of denial. There was no pain.

I have been meditating for years and have always preferred 'alternatives' to conventional medicine-
Alternatives suit me better. I also have done many courses whilst living in London and one of them taught how to listen to the body.

Anyway, thank you for all the help and I wish you well. I feel much more empowered.
Take care,
gail
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Date: 16.11.2013
From: ginny bailey

Subject: Re: Fatigue in Rheumatoid Arthritis

I have RA and i have just had a day out with friends, but its taken me 2 days to recover from it, is this normal?
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Date: 16.11.2013
From: marlene

Subject: Re: Fatigue in Rheumatoid Arthritis

Hi Ginny, yes this is very normal I am sure lots of the girls and guys on here will tell you. I have OA and the same thing happens with me.
It seems it is all part and parcel of all the many forms of Arthritis. Rest up and just remember the day and say it was all worth it.
Take care and I hope you enjoy many more days out with your friends. X
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Date: 16.11.2013
From: ginny bailey

Subject: Re: Fatigue in Rheumatoid Arthritis

oh dear off to canada in 2014 for 3 weeks , 8 days on a tour , hope i can cope with it.
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Date: 16.11.2013
From: marlene

Subject: Re: Fatigue in Rheumatoid Arthritis

You will Ginny, make sure you have all your meds and painkillers (if necessary). Just remember to pace yourself and rest when you can. Many of us still enjoy our holidays at home and abroad.
Canada how lovely I have a friend that honeymooned there and she was absolutely in awe with the place.
I have a lot of pain unfortunately and I travel abroad each year in the winter for some sunshine. I manage very well. In fact the warm weather has me feeling better in a short space of time.
Ginny don't worry just enjoy the break. You will be fine!!!!!!
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Date: 16.11.2013
From: ginny bailey

Subject: Re: Fatigue in Rheumatoid Arthritis

Thank you Marlene im sure i will be fine and can rest for a few days when i arrive at sons house.
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Date: 16.11.2013
From: marlene

Subject: Re: Fatigue in Rheumatoid Arthritis

I am sure your son will look after you and help you rest when you need it. That must be a double fantastic holiday if you are spending it with your son!!!
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Date: 16.11.2013
From: ginny bailey

Subject: Re: Fatigue in Rheumatoid Arthritis

I have the problem of the heat making my feet so sore and painful its awful, i live on painkillers when the weather is good, they are so painful they wake me up, and in the winter my knees, and hands are really painful so cant win.
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Date: 17.11.2013
From: marlene

Subject: Re: Fatigue in Rheumatoid Arthritis

I know Ginny its the same for me hot humid weather is no good to me. I go to Fuerteventura it has cool breezes and not to hot in November. my GP said it is ideal for me with the OA. I did ask can I get it on the NHS but unfortunately not.
I also found a fantastic Man that does massages for 15 out there and when I made enquiries here it would cost 60 a time so that is a no go. I have treated myself occasionally but I would love to go once a week. It helps free off the muscle that are so stiff.
Oh well such is life I don't let any of it get me down too much not ready for the armchair yet. LOL.
Take care x
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Date: 18.11.2013
From: ginny bailey

Subject: Re: Fatigue in Rheumatoid Arthritis

spent a lot of time in Lanzarote, but still had same problem with my feet and ankles, dread getting out of bed or up walking after sitting down for a while, its not good.but we just have to get on with it don't we. x
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