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Shell27
Shell27 Member Posts: 4
edited 28. Nov 2023, 14:07 in Living with arthritis

Hi all I’m new to this so I don’t know what to expect I have been diagnosed with rheumatoid arthritis And fibromyalgia.All of this came as a shock to me as I have been very fit and worked for the last past 40 years in health and social care looking after others but due to having vaccinations I have had swollen joints which I have been told was inflammation and my immune system was over working itself I am now on medication methotrexate and steroids have been for the last couple of months don’t know what the outcome is going to be but was shocked to be told that I now have a disability and I find it very hard to take in and cope with.I struggle a lot with pains in my knees and find it very hard to climb stairs and get very out of breath sweating at night unable to sleep and today I found it very hard because I forgot how to make myself a cup of tea which brought tears to my eyes I don’t know if it’s the medication that’s making me feel like this but I am struggling. I don’t know who to talk to so any advice would be appreciated thank you.

Comments

  • Shell_H
    Shell_H Member Posts: 548

    Hi @Shell27 - welcome to the online community!

    I see you have been newly diagnosed with both Rheumatoid Arthritis and Fibromyalgia following on from your vaccinations. It's been a huge shock to you, and you have been struggling particular with pain in your knees - which is making it hard to climb stairs - and with memory loss. You've also been struggling with being able to go to sleep. You have been put on Methotrexate and Steroids to help.

    I know that everything can be hugely overwhelming when you've just been given a new diagnosis. I have provided links to general information about both Rheumatoid Arthritis and Fibromyalgia below, and if you read them a bit at a time then it could help you to be able to understand what you have been diagnosed with. Try not to let it overwhelm you.

    Your medication is important for Rheumatoid Arthritis, but you do need to know there are lots of different medications out there, so if you don't like one or get lots of side effects your doctor can always give you a different medication. So it's very important to let your doctor know if you have any issues or worries and the should be able to move you on to a different medication if you don't agree with this one. That said, memory loss is not given as a side effect for either Methotrexate or Steroids, but I'd still mention it to my doctor if it was me.

    Being unable to sleep due to pain is something most of us with arthritis find a way to mitigate. There are a number of things you can do to help with pain - but I've not personally come across excessive sweating as an issue before. I'm sure some members of the community may be able to help, but all I can suggest is again mentioning it to your doctor in case it is a side effect and doing things I'm sure you've already thought about such as opening your window and using a lighter duvet if you're overheating at night.

    Please feel welcome to share anything, ask anything or even just vent about anything you want here. This is a place where you have other people who do understand what you're feeling.

    Lovely to meet you!

    Shell

  • Arthuritis
    Arthuritis Member Posts: 443

    @Shell27 @Shell_H

    Quick question has this been reported to Yellow Card i) as an individual ii) more importantly on our behalf as sufferers by VA to MHRA?

    The latter is really important as it draws a line in the sand to flag that the phenomenon is real and needs investigation. Its easy to dismiss individuals in pain reporting this by claiming “we have never heard of this before/no one else has reported this or other gaslighting that often occurs.

    We need a voice that represents us accurately.

  • Arthuritis
    Arthuritis Member Posts: 443

    @Shell27 Have you tested for covid (Omicron)? Night sweats, struggling for breath and forgetting stuff sounds like covid. The vaccinations & booster won’t stop you catching it, they are intended to blunt the impact of the infection.

    BTW, I have a similar story, developed RA symptoms after vax (covid 1, covid 2 & fluVax) and have reported to Yellow card MHRA with my full details.

  • Shell27
    Shell27 Member Posts: 4

    Just would like to say thank you both for getting back to me, I am finding the information very helpful, Hopefully I will have a more understanding of what is going on with me. My consultant has told me that my immune system is working overtime and this is affecting the tissues in my body and this is what has caused me to end up with inflammatory Seronegative Rheumatoid Arthritis. I have just had a consultation with my consultant this morning and she has explained that the steroids are causing the sweats and the breathlessness when I’m walking around or doing any activities and that the fibromyalgia sometimes can causeBrain fog and not to worry too much. Just to confirm That I do a natural flow each other day as I live with vulnerable people so that Covid can go and take a hike LOL

  • frogmorton
    frogmorton Member Posts: 29,336

    Absolutely @Shell27

    I was going to say steroid gave my daughter terrible hot flushes at 16! When she was on chemo.

    They are a fabulous - short term - medication while your MTX kicks in in the meantime keep cool!

    Lovely to meet you anyway hope you find the forum as helpful as I have over the years.

  • Arthuritis
    Arthuritis Member Posts: 443

    You are welcome @Shell27 I am so happy your rheumy was able to reassure you, not many realise how important this is to the newly diagnosed, esp if its sudden onset.

  • Shell27
    Shell27 Member Posts: 4

    Hi,can anyone help with some advice on pip, I have been given standed rate for daily liveing task, but not enough for mobility. How do I get more everdence as I am struggling to get around sometimes with RA and fiobro. As anyone had problems and how do I go about it. My GP told me to apply as I am unable to work as I used to be a carer to look after a family member but no longer able to do this.My partner works self-employed but only part time now due to looking after his disabled brother elderly mother and father and myself now.Any help on advice would be appreciated.