Feeling really worn out, low…I’ve stopped using hydroxy a couple of months ago for my Uctd as İt did not help and was advised to stop by the consultant. Applied for PIP to get some support. I’ve been really struggling to cope with the chores at home. Cooking, cleaning is exhausting . PIP application has been turned down. Don’t know whether it’s worth going to the tribunal. Got 6 points for daily living and 4 points for mobility. Not sure I can go through further stress. I am self employed doing some part time work which I love, there aren’t many things I enjoy, since I’ve developed UCTD, it feels like life is sucked out of me. Feeling fatiqued and in oain all the time.
it seems like this is the only place I can complain… Hope it’s Ok.
Thank you for reading…
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April2018
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Good morning, i'm so sorry to hear that you're really struggling at the moment. I was diagnosed with UCTD for a long time before it got changed to lupus. I also went through around five different immunosuppressant medications before I found the right one for me. I hope this is some encouragement that another medication might have a better effect.
Applying for benefits can be exhausting and stressful. In particular I have found the PIP form to be a minefield when it comes to chronic conditions. I believe your first step would be to ask for a mandatory reconsideration. Here's a link that might be helpful: citizensadvice.org.uk/benef...
Isn't it ironic that the benefits that are supposed to support those struggling with illness have the potential to make those illnesses worse through the stress they cause.
Thank you. I think my consultant do not want to put me on heavy medications. I am reluctant to go on stereoids or immunosuppressants, trying to manage the symptoms. I pace myself and practice mindfullness and pay attention to my diet. I take omega 3 with vit D everyday.
Many thanks for reading my post and for your caring comments.
It sounds like you're doing your best to look after yourself which is wonderful! I also try to pay attention to what I eat and I took a lot of supplements for some time but unfortunately it wasn't enough on its own. Medications can be really scary and I was reluctant for a long time to take any due to side effects. However I have gradually learnt that the game is rigged in that you can do all the right things for your health and still feel rubbish and sometimes a bit of medication can level the playing field so that all your hard work doesn't go to waste.
I hope you and your consultant can come to a next step that you're both happy with. Take care x x
You have my sympathies, it’s entirely natural to feel down about a chronic illness and stressed on the journey to the best treatment for your condition.
PurpleShamrock has given good advice on PIP. Yes, they do make getting some financial assistance as hard as they can. I went to Tribunal over my last claim, fuelled by my rage at the assessor’s lack of familiarity with the concept of the truth. My appeal was won by the time I had the chance to sit down and say good morning. The judge awarded me five years.
I found my council’s Benefits Advisor’s help invaluable. x
Hi April, I am so sorry you feel so low and that your pain is not well controlled. My advice for what it is worth is to try and tackle such overwhelming issues of pain and PIP applications separately.
First your pain levels. Did your Consultant put you on any other medication for your pain? If not why not? You can call the Rheumatology Nurse or the Consultants Secretary to let them know that the symptoms are debilitating and you need help.
Secondly the PIP application. Did you use the Benefits and Work site when applying?If not I would strongly recommend that you do. You can ask fir a Manditary Reconsideration but there us a strict timeframe so you need to act quickly. The website will cost you around £20 for the year and it will walk you through all the steps you need to take to ask the DWP to look at your situation again.
This is a safe place full of people who totally understand the pain and despair of AI conditions so it us the best place to vent, get advice or laugh and share photos of gardens, pets , craft work or baking.
I can't offer any better advice than the excellent ones you have already had. Here is a safe space to let it all out and there are people here that care and can relate to what you are going through. We are all going through our own auto immune journey and we come here for the same reason as you are here, because we know people will listen and support. So, of course its ok to come on here and let your anger and worries out. The other thing I would say is despite what is going on, try to be kind to yourself and try ( easier said than done) and keep one bit of the day, however brief, just for whatever works for you - a ten minute walk, a hand massage, a meditation, a piece of music - self compassion is an important part of our journey and part of managing what can feel all consuming . xx
I have recently started taking mepacrine, which is supposed to work well synergistically with hydroxychloroquine, filling in the gaps and possibly reducing fatigue.
I have been on hydroxychloroquine for two years and although not perfect I believe it has helped my UCTD symptoms a lot. I would not be without it.
Has your consultant offered you anything else?
Are they really with it?
I'm feeling low at the moment due to rubbish eye appointments. Don't feel I can trust many doctors. So much is wrong with the medical services we use.
This is so sad. Does your doctor know your symptoms are this debilitating? They need to know how much your life has been affected.
If the Hydroxy was not effective, would they consider low dose prednisone? Yes, there are side effects. But quality of life has to be considered too. Many people with lupus and UCTD have to be on steroids just to manage the fatigue and pain.
Don’t give up. Please tell your rheumatologist how bad you feel.
I'm so sorry you are struggling. I can't add anything more to the excellent advice you have had here. I can recommend Benefits an Work, like Cecily suggested, also Turn2us with your appeal. It's really stressful, but you should definately appeal. Take care, wishing you all the best xxx
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