Work or not?

Bubbette

Hi
Is there anyone else who has Palindromic Rheumatoid Arthritis out there?
I am between jobs and because of this condition feel I can not get another job because of the unpredictability of flare ups.
Today I am fine but tomorrow I may not be able to stand up.
At the moment I am claiming ESA and have a Doctors sick note that ends soon. I am thinking of asking for another sick note and see if I can claim PIP also.
Is anyone else in this position?
I know if I go ahead and claim PIP I will have to go for an assessment, which no doubt will be on a good day when I feel and look absolutely normal. Any advise please.

[Deleted User]

Hi Bubbette and welcome to the Arthritis forums.

The Arthritis Care web site has two good pages on Palindromic Rheumatism:

"Palindromic rheumatism describes a form of joint pain that comes and goes in cycles or episodes, starting in one joint, perhaps moving to others before going away."

More here: https://www.arthritiscare.org.uk/do-i-have-arthritis/a-z-of-types/104-palindromic-rheumatism

Plus a factsheet that you can download, includes information on symptoms, diagnosis and treatment:

https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/449-palindromic-rheumatism


The website also has a section on claiming PIP, which can be found here: https://www.arthritiscare.org.uk/living-with-arthritis/financial-support-and-arthritis/personal-independence-payment-pip


All best wishes
Brynmor

dreamdaisy

Hello, I was able to continue working despite having psoriatic (PsA) and osteoarthritis because I was self-employed. The only benefit I claim is higher-rate mobility DLA (the old version of PIP) and I am waiting to be transferred. When the time comes for my assessment I shall act as though it's a bad day (the chances are with both that it will be but I am willing to aim for an Oscar ) but fully expect to lose some funding which will be a blow:. it funds my fuel costs, my cleaner and the extra aids etc. that I need. I retired a few years ago and don't regret it, I genuinely do not know how some on here manage to carry on despite the unpredictability of our various conditions.

My husband had a secretary with PsA and as she worsened she was able to work from home. You don't mention what kind of work you do but I hope that is a possibility of you find a suitably understanding employer. They naturally want reliable employees, we (un-naturally thanks to disease) are not.

What medication are you taking at the moment and how successful is it? DD

dibdab

Hi there,
Sorry to hear that you're struggling.
I began with Palindromic Rheumatism whilst an early years teacher, with appropriate medication and pain relief I continued to do so. Eventually I developed Rheumatoid arthritis, the medications for treating both disease processes are the same, I continued to teach for another 7 years, though part time for the final years. Eventually I took early retirement at 55 because the fatigue was over whelming and the little germ machines(children) persisted in giving me chest infections which caused lung damage.

Could you work-I think so, particularly when a rheumatologist has found the right combination of disease modifiers to keep you functioning. Sometimes worrying about the "What ifs...."is worse than the reality, and you find ways of adapting and working smarter to achieve stuff if you want to. For me teaching was a passion and having to walk away a real blow.


I don't know if you have seen a rheumatologist, but if not asking for a referral may be a good first step.

Deb

jennand

Bubette, it all depends on what your job is. I was a Practice Nurse and my work days were full of appointments, clinics and teaching so it was almost impossible to take days off as it would cause so much work for others to cancel all these activities ( not to mention inconvenience for patients). I used to work in A&E and although that was stressful, it was actually easier to call in sick, practically, but I didn’t like leaving my colleagues short staffed. All in all, the whole situation was stressful and this caused more flares. I was medically retired 9 years ago and have to say that it was a good move. I claimed ESA until I got my state pension. I got early NHS pension and I also get PIP. The 2 benefits themselves are difficult to process but there is a very good website called Benefits and Work which was a big help to me.
If you have a job that you could fit around your condition, all good, but it isn’t the end of the world if you have to finish.

Bubbette

Thanks for all your replies. I am 57 and have had Palindromic Rheumatoid Arthritis for over 20 years. I worked as an Administrator for 10 years and they were really understanding, but was made redundant in 2015. I have been temping since then and had a severe case of Bronchitis at the beginning of this year which has taken me a long time to recover from. I have applied for many jobs since then but I know I would be an unreliable employee because of this unpredictable condition.

I recently staring methotrexate injections as the tablets were not working. I also take sulphasalazine and folic acid.

Airwave!

I've said this to quite a few arthers, go and get some professional help, union rep or human resources or similar to advise you about your illness and work. They will have dealt with and trained for such events and it will make a huge difference to you over the rest of your life. I doubt if arther will go away!

Good luck.