Severe fatigue: Last few weeks i have been so tired... - NRAS

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Severe fatigue

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Last few weeks i have been so tired, and cant seem to shake it off, i dont have the energy to set my mind to do anything, so my million and one hobbies are are not getting looked at, or maybe cos thats cos my hands are so swollen?? i always follow the gps and rheumys orders, and take medication when i should and never miss, but seem to be turning more and more invites away, its a bit like i need plugging in and charging up! does anyone feel i should be changing the medication i am on? maybe its stopped working for me? i am on methrotrexate injections and sulphasalazine.. any advice welcome

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6 Replies
KayEP profile image
KayEP

I was taking sulphasalazine when it stopped working and had one of the worst flare-ups ever - just like you are, with severely swollen hands and was put on Enbrel immediately (plus occasional cortisone injections), and given hand/wrist braces (made to measure). It did take about 3 months before things calmed down completely during which time my wrist was damaged. I had to stop taking MTX because it gave me the liver of an alcoholic (and I don't drink). You should see your Rheumy asap and ask for your meds to be changed.

medway-lady profile image
medway-lady

Perhaps talk about a change. Lefludamide hs worked well for me. Its just a thought as no one size fits all but your meds do not seem to be working.

StormySeas profile image
StormySeas

Dear Comfortably Numb

I am new on here and don't class myself as nearly as knowledgeable as many of the others but I'm shocked to see your hand and read your story. I'm only replying as not many others have so far. It looks to me as if you're having a terrible flare-up and should be getting some immediate treatment.

Can you see your GP, taking that picture of your hand with you (if it's improved in the meantime) and request an urgent referral to RH?

The other thing you could do if you're desperate is to simply turn up at your OP hospital RH clinic and show them how much worse you are.

I really don't think you should be suffering like this and not able to get help. I know how much pain you must be in as I've just had a (thankfully brief) episode like this. Your treatment is clearly not working if you're having constant flares like this. Tiredness and everything else seems to be part of the disease and if you're as bad as you say then maybe your drugs need reviewing. Certainly, you need to be seen by a RH doctor (not a GP) urgently.

I hope you manage to get some help. Kind regards

in reply toStormySeas

Hi and thank you for your reply, i was in just over a week ago for a blood test, and they rang me the day after to tell me my crp was high and asked me if i had had an infection, as that is what that usually means, i said no i had not but was having flare after flare and am in a lot of pain, and maybe that,s why it is high, so was told if the pain gets bad or i show any signs of an infection go to my gp as everything else on the test was fine, and am not due to see the rheumatology nurse till aug, even though i have not seen one since feb as the appointments have been getting cancelled due to short staffing, i have a rheumatoid checkup with my gp every 12 months, but this time it was given to a nurse, who checked my blood pressure, measured me , weighed me, and told me she would see me next year, so i am sure i will cope till august, the hands are not as sore now, and not in much pain, so hopefully will get a breather before it all starts off again and maybe even do an oil painting or 3. Kind regards, Tony.

Fruitandnutcase profile image
Fruitandnutcase

I'm not much help for advice - my arthritis is fairly mild and under control but I can offer sympathy because your poor hand looks dreadfully painful and you sound really miserable. I really think you need to see your rheumy or someone who can plug you in and revive you or whatever long before August. Have you got any idea of anything that could have triggered this flare up? I hope you can get sorted out and get back to some of your hobbies soon. Hobbies are what keep us going and put a smile on our faces so good luck.

Oh dear, looks painful. Hubby has been on methotrexate injections and sulfasalazine for a while now but inflammation levels are rising again and he's struggling. Hosp is considering hubby for biologics. Having lots of tests at mo. Then he has another assessment to see if he's eligible? Maybe you will be offered biologics next? Take care, Sue.....

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