I am newly diagnosed with Seronegative RA and Sjorgrens and I can't believe how tired I am. Some days I am not too bad, like yesterday, so I drove to my sons which is about 65 miles away and back again and by the time I got home I just wanted to sleep with overwhelming tiredness and I did!
Today I got up and could barely weightbear on my feet as they were so painful and again I am so tired and my eyes have been sore all day. feeling like this but I can't financially afford not to work
I am just wondered if this is fairly typical of my illnesses? I have been off work for 7 weeks now due to swollen knuckles and soles of my feet. Pains in elbows etc. I am going back this week even though I am still feeling poorly but financialy need too.I am 60 and have put al this down until it got so bad to just advancing years.
Pehaps someone can assure me this is fairly typical as I get worried there is something else wrong with me.
Many thanks for reading.
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hev53
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fatigue is definately one of the worst symptoms we have to deal with.....most weeks i only manage to leave the house once or twice and then am totally wiped out to the point of collapse after just a couple of hours....it does tend to go in patches tho so you learn to make the most of the good days xx
So sorry to hear that. Izzy. Cant say I feel ready to return to work but needs must. I just hope the Hydroxychloroquine kicks in soon and I can go into remission for a while. Xx
I too can confirm that extreme tiredness is part of this disease.... But it does get better once your RA is under control, as a lot of the tiredness is due to the inflammation level. Once the drugs started working for me things really did start to get better. I do have to make sure I don't overdo things, and I now need to get at least 8 hours sleep a night (preferably 10!) but otherwise I can manage to be quite "normal".
But do please rethink about going back to work too soon. This is a tough disease to get controlled and to come to terms with, and it can take a long time for the drugs to work. And even longer if you don't rest enough at the beginning, so a few extra weeks off may be worth it in the longer term. take care. Polly
Fatigue for me was more of a problem than the pain, in that it was harder to control and hung around for longer. I don't work much now and having control over my own time helps me to manage it better. I get 8-9 hours sleep a night, and make sure I take regular breaks during the day, and things have got better. But it took a long time.
Thank you all of you. My problem is that I am on half pay now and as the main wage earner we rely heavily on my pay so there is very little choice. I was thinking of retiring and taking my pension (I am a nurse, work for the NHS) and I also have my 94 year old Mum living with me who is getting more frail, so even my home time is quite demanding. I am not feeling sorry for myself just painting the picture.
Has anyone tried to apply for benefits? Just wondering if at an early stage, like I am, able to apply for DLA or it's equivelent, I think it's PIP now. If I could perhaps go patr time if I got a little help. But reading the criteria, I am not sure I would qualify as 'disabled' although some days I am certainly not 'able'.
I sound like a right moaner, but honestly I am not. Lol xx
Hi just been through the same as you. The people I found unexpectedly the most helpful was occupational therapy . If u approach them and ask for help they are amazing and font pester you about being sick. Mine helped me with meetings , supported me and sorted out physio and OT and eventually helped me get sorted when the wanted to "dismiss " me on ill health. The other people are the union , I was with RCN and they gave me a disability rep who guided me through all my choices re retirement , then you get dismissed then u apply for a pension after that, u need your manager, occu health and personnel all to agree you are to I'll even for another job within the nhs. The other choice is to ask for a career break, you if allowed take a year off and hopefully by then your RA drugs will bd working and u might get back yo work but they have to make suitable adjustments for you. Any more info give me a private message if u want. You can also phone the Nras helpline they have lots of advice and also have telephone volunteers and u can talk to people who have been through your situation. Hope you get started on the meds soon , hugs Axx
Hi Thank you for that, really useful. I have asked to be re-referred to Occupation Health as the consultant there was lovely and thoroughly understood my problems. I have also told them that shift work will be difficult in the winter months and my poor night vision has definately got worse. They are making adjustments where they can so have been supportive. I shall phone the RCN and explore the options there.
Financies is my main problem,it's not that I want a lot but unfortunately have large bills and debts that were kindly left to me if you get my drift.
Thanks again for your help. I will let you know how I get on. Hug back xxxx
My RA is not "bad" by comparison with lots of people - I think of myself as lucky. However I did get my teacher's pension even though the NUT said I was unlikely to get it while I was still breathing because the criteria were so tight. I filled in the forms very intelligently, with the help of the rheumatology nurse, and made sure that I showed exactly how the disease impacted on my ability to meet the standards for the profession. A particular area to focus on is health and safety - this advice came from another member on here. If a medical professional says that you are unable to do your job without risk to patients or to yourself, and that this situation will not change, it would seem hard for them to say that you are fit to carry on.
It's a hard process to go through because it makes you face up to the details of your disease. When I got my forms back from the nurse with her details filled in, it was a proper lump in the throat moment. But I am now retired and able to live a relatively stress-free life, although not a wealthy one by any means!
Have you got attendance allowance for your Mum. it's not a massive amount but helps. And talk to all the organisations 'you' owe money to to see if you can spread things out a bit. Stress and RA are really not good friends, so also try to give yourself a bit of pampering every now & then. Even if just a mig of chocolate and a biscuit, Polly
Yes Attendance Allowence in place and that helps to prop up my salary. I am doing my sums as we speak! I have also made an appointment next Tuesday at the CAB near where I live. Thanks for all your support. xx
As others have said, yes it's part of the disease and there is help available from wonderful people out there so I won't repeat it all again. It helps to plan ahead, and you're discovering what your limitations are. It also helps other people to know that you don't have unlimited resources any longer. To help people in my life understand I tell them I wake up with a number of 'credits' available to me; I can do all kinds of things, but each thing uses up a number of credits and when they're gone what I can do is extremely limited. A busy day means that the next day starts with fewer credits available, and as you found a long drive takes its toll the next day.
Having these limitations is horrible, but to a degree it can be manageable. Be kind to yourself, you're worth it!
What a lovely sentiment, thank you for that Also that is a good way at look at your energy / capability levels. It is as you say all about reality checking your limitations and what you can and can't do. I have always been the 'dooer' in my relationships with family and friends, kids etc. I need them also to realise I may need some things doing for me now!
Hello. I can totally sympathise with you. I was diagnosed with RA 6 months ago at the age of 32. The consultant gradually put me on methotrexate and hydroxychloroquine. But the main problem I had was the fatigue, I have never felt so exhausted in all my life! Same as you I am the main wage earner and couldn't afford not to work. I asked my rheumy nurse about the fatigue and she told me it should settle once the medication took effect. About 2 months ago because of the fatigue I was very very depressed, I'm not a weepy person but I was crying for silly things like folding laundry, getting up to go to work was a real effort and staying focussed to do any work was a major problem. I went to the GP to get an anti-depressant as I felt my mood needed to be improved. He suggested changing my medication levels going against the direction of my consultant. He didn't want to give me anything to start but I insisted on being given something for the depression. He prescribed me Amitriptyline (10mg). I started taking this and it literally knocked me out for the night. After 3 days of proper deep sleep my friends said I was like a completely different person. I suddenly found I could cope again. I don't know whether it is working as an anti-depressant but it certainly works as a sleeping tablet. I went to see the consultant about a month ago for my "3 month check-up" and she indicated that maybe the combination of methatrexate and hydroxychloroquine wasn't working for me, but the inclusion of Amitriptyline in my medicinal cocktail certainly made a difference to my overall health. So I am now holding steady on all meds until I have an ultrasound on my hands before the consultant wants to start changing the amount of medication that I am taking, so I am sleeping most nights and coping much better with my diagnosis, although I still get very tired every now and again. I am not saying that Amitriptyline will help you but it has certainly helped me overcome my fatigue, the part of the disease that I was finding most difficult to deal with. Best wishes. xx
At ten mg that's not an anti-depressant dose but as you've found it helps you to get a good night's sleep and that can make a world of difference to how you feel and your ability to cope:-} I've been taking it at night for neuropathic pain for about ten years now - and like you getting more restful sleep really helped.
That's interesting. I will see how it goes. I also take Alendronic Acid and Prednisolone when it's particularly bad, but I hate taking the steroids.
Glad that you have started to fel better. I do sleep, in fact too much at present. I don't want to get up and once I am up I want to lie down! I am sure it will pass. As I said going back to work this week, going to try at least and take it from there.
I get B12 injections as part of my treatment and I take a B12 supplement as well. It seems to help with the fatigue. I'm not as productive as I used to be, but I'm not on the couch all day either. I'm in the US and it is standard part of RA treatment here; I'm not sure about the UK treatments. Some of the medications have different names here. I hope you find an answer soon. The fatigue is also my biggest everyday problem.
Oh yes - the fatigue! I too have RA (18 years now) and secondary Sjogrens and I liken the fatigue to trying to wade through waist high treacle with bricks tied to my feet. Unfortunately it is part and parcel of the disease for many people but I have found from experience that it can improve - or go completely - at times when the inflammation is well controlled. When I was first diagnosed the consultant asked me about fatigue and when he said that some people found it more difficult than the joint pain I didn't understand what he was talking about. Then it hit me for the first time and then I didn't know what had hit me. You say you are newly diagnosed so I'm guessing that you haven't yet found the combination of meds which works best for you. It can be a real rollercoaster ride to start with but hopefully, if you can get settled on some meds which work for you, things will improve. Re the Sjogrens, as far as I understand it, it's more a case of "managing the symptoms" rather than of "treating it" so hopefully you have been referred to an eye specialist about your eyes and have been prescribed drops and/or cream to try to help the soreness. I really feel for you so much, trying to deal with everything when you are struggling so much and I hope so much that you will soon start to feel better than you do now.
I find the fatigue is more noticeable when the disease is active. Typically I would fall asleep watching TV programmes I was interested in.
When my disease is under control the fatigue is much more manageable.
I had Chronic Fatigue about 20 odd years ago and the fatigue symptoms were very similar but much more intense. I often slept 12 or more hours per day while just about managing to keep working. It was our own family farm so I was able work flexibly.
I hope your RA is brought under control soon and your fatigue is reduced.
Thank you. I have actually had a better day today fatigue wise and my pain felt under control but tonight I ifted two empty dinner plates with one hand and now I am in agony and the knuckles on the hand have swollen and become inflammed! Looking at the other hand it's red and swollen also. Is this normal?
You are so right when you say the fatigue is worse than the joint pain. You can manage the pain but as we have all said the fatigue is untenable.
So glad I have found this site, there is nothing better than peer support and expert patient advice.
I was diagnosed with seronegative ra in 1991 when I was 30 .im 53 now and the fatigue after the pain is the worst ,I'm lucky to be on anti tnf etenercept now and it's amazing ..I did have to go through all the other drugs before anti tnf,in fact it didn't exist when I was diagnosed ,,there is hope for us xx
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