I am new to this forum but not RA. I was diagnosed in 2016 showing positive for the rheumatoid factor in my blood test. I was treated with hydroxychloroquine but not for long. I think it was stopped because my symptoms went away.
Anyway 4 years on and I’m really struggling. I developed a hive type rash in December 2018 which is triggered by the cold and varies in severity. I have only just been treated with Methotrexate and about to take my 6th week treatment this week. It will be 20mg. I take folic acid every day apart from treatment day.
But, I am so utterly exhausted. I am a single parent (widowed) and my little girl is 9. I work full time as a nursing director but I can’t keep it up. I have called in sick today and yesterday because I am so exhausted and in pain. I have pain in my hips and shoulder and at times my wrists. I am suffering with the side effects from the methotrexate.
I would like to reduce my hours but I don’t think work will allow me to die to my role. I don’t want to change jobs at the moment because I’m not in the right frame of mind or even feel strong enough. I’m so worried about it all. I am considering applying for PIP. I can’t do the washing, shopping, cleaning etc. It just builds up. I try and do bits but I have no choice- I have to do things else they don’t get done.
I’d really appreciate any advice from anyone who has been in this position and any advice on how to move forward. I have given my employer the NRAS guide for employers and they have agreed to my proposal of working one day a week from home on a 4 weekly review, but if I am honest, I feel like I just need to go off sick.
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Hazel2020
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Oh Hazel I do feel sorry for you. Work a young child and doing this all on your own and then RA is thrown in. You are not super human and I applaud you.
You are still in the early stages of you treatment and as we know these medications take time to work . Fatigue is something I have always struggled with and I’m sorry I don’t have anything useful to say that may help... I’ve tried everything. Others on here may have some useful advice.
Methotrexate can cause fatigue. Is your fatigue worse after taking your mtx? It might be worth noting.
PIP is a bit of a faff to apply for but it might be worth it( if you do apply ask for guidance) The pip if awarded could help pay for a cleaner so that’s one less thing you need to do.
Please keep in touch so many on here will listen . We are not fussy we will listen to the good and bad .we will help if we can x
Hi Hazel. I get where you are coming from on the work front. However I was honest about how I was feeling and was termed not stable and they are working with me at the moment on reducing hours and days I work etc. Maybe this is something you need to discuss but also bear in mind they have to work with the Equality Act as this is a long term chronic illness.
I was diagnosed last July started treatment Oct and its been a very bumpy road with meds and the fatigue has been horrendous.
Patience and rest is what you need and these words I hated when first told but though it might not seem to work your body needs this.
My thought process was to change jobs but covid has meant I need to stick tight to the company I am with as changing now would be a nightmare.
Therefore talk to your HR dept. be upfront that you don't know what will happen week to week at the moment so they maybe can plan with you some ideas on a work schedule.
PIP helps but not enough if the base money to pay bills.
Keep in touch and take some stress off yourself by talking to work it helped me know they know how bad I was.
Thanks Dee, I have spoken to HR and my line manager. I suggested a work week of working on site Monday, Wednesday and Friday and working from home Tuesday. I work from home on a Thursday (same company but a corporate role) so it does support me in only have to travel to work and back and be based on site every other day, however week 2 into this and I am struggling this week. I would like to drop my hours to 30 hours a week which I hope work will support but I’m not sure they will at the moment. They may say that my role is 37.5 and may impact the business too much with only working for them 3 days a week and then the other day corporately. They are being supportive so far and I’m grateful for that. X
I was the same and had to reduce again as my body not responding well and work had to help me, so they did as a long term health issue, so they were trying to help me short term to see if I responded when on lower hours. So worth mentioning or you could get worse as your body is being pushed when you should be resting.
Its tough and especially now as our company looking at redundancies due to c19 and I cant afford not to be working but now been off 7months with furlough and will probably be on sick leave in Nov as meds not steady yet with my RA.
Hi Hazel and welcome to the forum. I can't give you any advice that has not already been said here but I just wanted to say that I really feel for you, you are going through hell at the moment. It will get better but you probably know that six weeks on MTX isn't long and it can take up to three months to feel any benefit. Ask your GP for pain relief to tide you over until the MTX kicks in. All the best to you and stay in touch. xx
Hats off to you Hazel, having to cope on your own is very hard and I would definitely apply for pup as you are entitled to it also give NRAS helpline a phone and speak with an advisor as they might be able to help,take care xxx
Hello Hazel and welcome. I'm so sorry to hear you're struggling at the moment and with RA and trying to hold down a job especially as a single parent must be really tough.
I agree with Wishbone. Do contact your Rheumatology nurse/consultant/patient helpline and ask if you can have some steroids immediately to tide you over until the MTX kicks in fully (which may take several months). An injection will probably work quicker than Prednisolone tablets but the latter will mean you won't need to go to hospital if your GP is not keen to give the injection. Steroids will make you feel so much better within a few days, reduce the pain, give you energy and probably help you carry on working. I also agree with others who replied that you will probably need to talk to your employer about your condition and ask them to give you some support or make adjustments to your work commitments/hours etc. NRAS and CItizens Advice can offer you lots of information and advice on how to tackle that.
Thank you everyone- I will take all the advice on board, especially the bit about patience and allowing myself to take it easy.
I had a consultation with my GP this morning and she has agreed to refer back to the rheumatologist, although she did say my recent bloods showed normal levels of inflammation. I guess it’s hard to differentiate between the RA and methotrexate to determine what is causing the fatigue.
I also mentioned to the GP about PIP and she said it’s difficult because “you have to be fairly disabled to apply for this” and gave the example about having another person there to help me dress, shower, do the shopping etc! I had just explained that the pain in my shoulders for example make it difficult to hold the hair dryer to dry my hair, and if I do the housework, it can knock me about the next day or so.
Your gp is wrong. The nature of this disease means we have moments of good health but the flares and active disease is disabling. Not being able to do housework because your in pain or exhausted impacts on the care for your child so yes you would qualify for pip. No it’s not a lot it won’t cover bills but it could pay for a cleaner or for really bad days and you can’t drive it would cover the cost of a taxi.
Perhaps having time off sick so you can let your medication work and then you will feel less stressed.. RA loves stress.
J1707 that’s not correct, PIP is for daily living and mobility, it doesn’t matter if you can’t do your housework as that is not part of the qualifying criteria. You can use it to pay for whatever you like once you have it but you need to have difficulties caring for yourself for 3 months + in the first place.
Yes but if you can’t do your housework because your disease impedes your ability. Sore joints fatigue etc or working full time becomes too much . Hazel mentioned drying her hair is problematic then I believe she is entitled to apply . The 3 months may be a problem . I’m not sure how long she has been suffering with covid etc her treatment may have been delayed.
No housework just doesn’t come into it however much RA impedes it.
Drying hair is personal care so yes people are entitled to apply but I doubt you would get any points for just that. It’s always worth trying for though if you have difficulties because you never know 😊
in reply to
The way my assessment said it she wanted to listen to impact to me on day to day stuff ie dressing/house work/bathing and loo as well as social and work impact. I told her cleaning was hit and miss now and cooking too. So I believer it also depends on the assessor but still worth applying for if you are struggling to achieve stuff in your day to day life compared to pre ra.
Yes they engage with you but it’s not part of the actual assessment, there’s no where to gain points for not always able to go out socially. Did they put all this on the report and you got points for it because I didn’t ? 😞
She was assessing on the phone what I could and could not do and things I struggled with etc. I think I was lucky that I had someone who was looking at the full picture rather than just criteria. However she was reading the assessment questions but would ask me ‘how what etx’
Thank you for your comment. I’m going to apply and see what happens. I was a little surprised by the comment too.
My sickness benefit gives me 4 weeks full pay and 4 weeks half pay, then SSP. I’ve already used my quota of full pay so if I went off sick now I would only be paid half pay. We don’t get paid for the first two days sickness either. Part of me just really wants to go sick while I sort this flare and treatment regime out but I couldn’t afford to do it. It’s very hard. X
Good luck citizens advice are good to help you fill in the form. It’s all time constraints with application. Always base it on your worst days your worst symptoms a personal support statement from your Rheumatologist nurse will help. Don’t use the words sometimes. People on here will be more than happy to give you advice . X
You have to be very careful the reasons you use to apply for PIP as it is a much sought after Benefit....applicants often fail because they don’t know the true criteria & they embellish their application with unnecessary information.
If I were you I’d give NRAS Admin a call....they will guide you in the right direction how to fill in the forms you need to qualify ....you can see posts on this site, saying how very stressful it is to apply & fail.
The CAB are also very experienced in helping applicants.
I worked as a sister inITU when I was diagnosed and when we changed to 12 and a half hours I felt that my health was deteriorating because of RA. I found that once I had done a shift my days off were recuperating and this went on and on. I spoke to HR and I also spoke to my doctor. My Gp put me on sick leave and during that time I felt I was able to re-evaluate my life. I had just had a new baby and couldn't even hold him and do very little for him without the help of my husband and family. during the sick leave my consultant was able to stabilise my RA but as soon as I tried to go back to workI found that I wasn't able to cope not because of stress but because the work was too much while I was trying to cope with my RA and work as well as keeping the general house duties to date. After speaking to HR we came to the conclusion that I either went to another job within the NHS ie audit, or I took early retirement ie medical retirement. I chose to take early retirement at the age of 40 which was the best thing Ive ever done. I had worked since I was 16.
I found that I was able to deal with my health , enjoy my son and pace myself. I realise that not everyone can do this for financial reasons but if you can then I would suggest it is not only good for your quality of life but also your daughters.
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