I was diagnosed two years ago with zero positive rheumatoid. In the grand scheme of things, I feel fairly fortunate. I've settled into a reasonable routine with a very low dose of MTX and very occasional oral steroids as the situation demands. My joints are generally well managed - niggles here and there but mostly I can do what I want/need to do. I have bouts of unexpected and mysterious 'feeling off colour' without any obvious rhyme or reason, or even particular symptoms - just bleurgh days. But what I really struggle with is fog and fatigue.
I teach and so during work time (4 days) I have to be 100% focused all day. This means that sometimes by the evening and into the weekend, I have very little left to offer. My partner is amazing but works full time and coaches my children's football teams, meaning he's often busy evenings and weekends too. I feel that what would really help me find a work/home/children/me balance, would be help with household tasks.
I know that fatigue is a known component of the whole rheumatoid parcel but does anyone know if PIP is worth investigating if other parts of the disease are mostly well managed? I feel like an hour or twos help the regular household jobs would make such a difference to the energy levels J have for all the other areas in my life.
Thank you in advance - from underneath another pile of three washed and dried loads, that now need to be put away...
L 😊
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Louise2015
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Sorry to hear you're feeling so drained at the minute- harnessing energy when feeling like such is a hard task.
With regards to pip, I'd encourage you to try. It is all about how a condition impacts your everyday living as opposed to the condition itself. Housework etc is one area but it may be that it affects your ability to cook, prepare food, waging and dressing etc. These are all things that they consider.
Thank you for your reply and understanding. I wasn't really sure what it would cover. I know that for some it's an adapted car, etc. I wasn't sure if it covered the symptoms that aren't outwardly apparent . I will investigate further and see what I can find out. Thanks again 😊
I think all I'd say there is that when you speak of adapted car etc that is to those who are awarded the higher rate of mobility . From what you've posted, to me it seems unlikely you would qualify for the mobility element of PIP- but that's just based on my understanding. Again, to me, you may be more likely to qualify for the care element / component but again, that would be based on your application and any assessment on the day.
Wishing you luck, no matter which way you decide to go.
Thank you, again. No, I'm absolutely sure I wouldn't qualify for anything at a higher level (and quite rightly, as that wouldn't reflect my current needs ). It would more around a helping hand to take some pressure off to enable me to continue working, raising my family and maintaining our home in a sustainable way going forward. 😊
Well, if you don't apply you'll never know & if you do apply you've nothing to lose! You probably know if you've researched it but the PIP face to face includes an assessment of your individual needs & a basic physical examination is usually done. It's intended to help pay for things which would make life easier for you so that could be anything from kitchen gadgets to a gardener or indeed someone to do your ironing for you! Just remember it's based on how your condition affects you, not the condition you have.
If you're sent an application form read the information before each section carefully & answer as it affects you. Some say Tell us if you can do this safely, to an acceptable standards, as often as you need to & in a reasonable time. In the relevant additional information part concentrate on the things you've told us about, that you're so tired in the evening you've no energy left to do housework, ironing etc, that your partner has commitments at weekends so is unable to help, things like that.
Thank you so much for your reply. I haven't done much research yet as although I've felt fatigued for a long time, my joints and mobility have been pretty good and I though t the assistance would be based more around those areas. My Rheumy says we caught the disease very early and before any damage occurred. It really is, at the moment, the fatigue that undoes me. Sometimes I have to nap as soon as I get home from work 😑. It is now the accumulation of what I can't do, when I would like to do it, that has been slowly building and feeling more and more onerous and exhausting. I just would like to able to give my very best to my family and work and home without wiping myself out for the weekend,which is when the children need me most 😴😴😴
It all comes down to pacing yourself as the Rheumy always says. If things don't get done, then they don't. You just do them when you can and include your husband and children in it. I live alone and also find the exhaustion is generally the worst part (although I do have other health problems as well). I work as well and my home and garden are important but not the main thing in my life. When one member of the family is ill it inevitably affects everyone and lifestyles change, try asking for their help, if they see you're struggling I'm sure they will.
Thank you. I agree, pacing is important but I don't find the pacing bit easy - and some things are unmovable. I'll have another look at it all and see if there's something I can change/lose from my routine. 😊
I agree. I found the first couple of years a nightmare trying to pace myself and used to get annoyed when Rheumy and GP constantly said that! Eventually I accepted that I couldn't do it all and slowly managed to change my mindset. On the PIP side, my younger sister (who's 52) and teaches full-time plus the inevitable lesson planning at home, has inflammatory and osteoarthritis and associated problems of deformed hands etc. She couldn't get PIP.
Ah, that means it sounds less hopeful and a little unfair. When it is recognised that there are so many elements to this disease and all of them can impact to a greater or lesser extent, I can only imagine how difficult it must be to make a judgement on whether someone needs additional help or not. Sometimes the smallest amount of support can make a world of difference, though. Asking for help is a hard thing for many, anyway but to feel that you're not being heard or understood or believed would probably make you want to not try again 😑
There is a template diary available on citizensadvice.org.uk which is useful fo keep for a while before you Fill in the claim form and will help you have evidence of how your condition affects you. To qualify you have to need help with some of the specific criteria -- there's not a general "feeling like death warmed up " clause!😀 Many PIP claims are turned down initially & then won on appeal so don't be too despondent if you don't get it first time. Provide the information from health professionals & make sure you have told them in detail about the fatigue and how it affects you. It is certainly worth a go. I wish I had known 10 years ago that fatigue was a big part of the illness because I would have tried v hard to stay at work instead of giving up because my demanding career was so exhausting. Citizens Advice will help you fill in the form if you want & add up the points you get to give you a good idea of your chances.
Thank you. Great advice - I'll have a look at the website for the diaries. It will be helpful to see from a personal point of view when the fatigue really kicks in and if there's a pattern to days and activities .
Hi Louise2015, on a completely different note, I'm struggling with all different health problems but am finding it difficult to get an inflammatory arthritis diagnosis, although I have pretty much all of the symptoms with the exception of anything showing in my blood tests. I have just managed to get a foot specialist to authorise an MRI scan, so I am keeping everything crossed that something might show on that. How were you diagnosed please ? As I am assuming it wasn't by blood tests.
It started with flitting pain that was in one joint for one or two days and would then move to another. At first I thought I'd pulled or twisted awkwardly. Putting coats on and even changing gear when driving began to hurt. The game changer was the feet. They started to feel like I'd been dancing all night in stiletto heels - unfortunately not. The first blood test showed an elevated rheumatoid factor but that alone, apparently, isn't absolute confirmation. It was the next more specific blood test that showed sero positive and ridiculously high anti CCP. And the rest is history - a blur of injections, prescriptions, hydrotherapy, podiatry and physiotherapy. My rheumatoid team were, and continue to be, outstanding. I'm thankful for their fast action which probably saved my joints. Two years down the line, I'm still getting my head around it all but trying to do all I can to ensure a relatively healthy future. I wish you luck with your investigation and hope you find relief soon 😊
That's exactly how my feet feel, I have had platar fasciitis in both feet which is why I have gone back to a foot specialist, I also have carpel tunnel in both hands/wrists, I have the left operated on, without much success, so I haven't had the right done as I'm frightened that something could go wrong with my dominant hand, especially for very little improvement. I'm just hoping that something more significant will show in the scan then I will return to a rheumatologist as my doctor isn't very sympathetic and has tired of sending me for blood tests. Good luck with your pip, I think it's a lot harder than it used to be, my friend has just retested, it seems that you really have to tell them your worst scenarios but like somebody said if you don't try you won't know.
Just keep going with it if you feel there could be more. You know your body best of all, and I certainly knew that something wasn't right but had no idea what that was. I just knew that I wasn't dancing every night and didn't have small pebbles in my socks, so it had to be something else. I wish you all the best.
I think it is always worth investigating as RA does impact on your everyday life including the most menial tasks and thats what they need to know about, I know it looks really daunting but they are genuinely there to help and as Eiram mentions its about hoe it impacts you rather than the condition itself
Sorry to hear your story. Some good replies on here. I can sympathise with you as have Psoratic arthritis and some other lifelong conditions. Fatigue affects me plus plus plus. I think you would not get PIP as you are able to work 4 days which is more than 50% of the time. I used to do PIP assessments. Try if you want but it's a very stressful process. It recently took me 11 months to get the right level of benefit for my son including going to tribunal
Oh gosh, that sounds exhausting in itself. Working less hours isn't an option at the moment, unfortunately. And retirement is quite a way off. It sounds like maybe there's a gap where people just need a small amount of help to keep them in work. It's as though I need my weekend to recharge for the week ahead.
I'm not sure about the work thing Louise. I am a social worker I'm a busy children and families team and I work full time ( albeit with periods where I can't) and I was awarded the high level of both mobility and care with regards to pip.
Also, maybe more can be fine fir you at work in terms of pacing and conserving your energies? Have you been referred to occupational health? In terms of suggestions to support you in work, they're very helpful? Also, have you been assessed by occupational therapy? There may be implements etc that can be used to help you around the house in relation to protecting your joints etc- pain leads to fatigue?
Hi, You are spot on there it is a case of finding out what you can and cant do and finding the right balance and as you perfectly describe pain does lead to fatigue, I have crutches and a stick and never go anywhere without one or the other but always try to manage without if i can, the biggest hurdle for me is steps luckily my work environment is all on ground level so when i was assessed in occupational health they were happy for me to carry on at work, at home i would not contemplate the stairs without a walking aid so all the things we would normally take for granted we now find take some thinking about and as i say its just about finding that balance and pacing yourself.
I applied for PIP in October 2016, not long after I was diagnosed. At the time I couldn't drive as my RA symptoms started in my left foot. I couldn't peel vegetables, not wash my hair as I had left side weakness and couldn't lift my arms up to my head.
I was not working but wanted to go back to work and that is why I applied for PIP.
The application form is very long winded but do not let that put you off. But do fill it in as if you are having a bad day.
I had to have a PIP assessment and I found that a bit traumatic. However, eventually I was awarded basic care component only, despite as far as I could see actually having enough 'points' for higher care and lower mobility. I did appeal but got the same decision (not a surprise) but it did give me @ £200 a month to help me. I am having to buy an automatic car because I am having trouble with a manual car because of the RA affecting my left foot and knee.
Go for it because worse case you get nothing but best case you get something to use to help you.
Hi and thank you for your reply. I know exactly what you mean. There are still occasional days when I get sore in the left knee, shoulder and hip, and think - hmmn, might have to start saving for an automatic, but then it will ease/move for a while. My youngest helps me zip up my dresses some days too. I'm just about keeping on top of the necessary house things but it's robbing Peter to pay Paul. I have much less energy than I did two years ago. And when I say it's only ok, that's only if you don't look too closely, but gardening and decorating I know would wipe me, but they need doing. It would make such a difference to be able to do the family things while the boys are still young 😑
I applied for PIP and the assessment was very basic. Anything the assessor couldn't actually see, i.e. fatigue, the variability of my RA, the mental health impact, etc., I wasn't awarded points for. I had to ask for a mandatory reconsideration with a back up letter from my GP. You should certainly apply but I would suggest that you not only get someone professional to help you fill in the form, but take someone with you to take notes or record the interview. It is very tough. It is long and the intrusive but the physical assessment was a joke. My assessor seemed pleasant enough but the report didn't reflect what I said or my condition. I'm sorry to have to say this but it is better to be prepared in advance. Good luck with your application.
I was just reading this thread and was wondering if you applied and what the outcome was. I was diagnosed with sero positive RA 10 years ago, for a few years I got DLA and then it all got taken away when it changed to PIP as they deemed my RA had no effect on my life whatsoever, I scored 0! I didn't have the energy at the time to appeal but I am considering re appling. I have had to go back to work full time as we needed the money but with that and 2 young children I am finding I am wiped out at the end of the day. Like you my RA seems under control with MTX and Humira but the fatigue and fog is the hardest to deal with. I am getting more and more forgetful and it takes me a lot longer to get my head round things than it used to.
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Fatigue!!!
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