Diagnosed

Hi I’ve just (finally) been diagnosed with fibromyalgia and arthritis in my knees.

Comments

  • Anna
    Anna Moderator Posts: 308

    Hi @HerlihyNat and welcome to the online community!

    it sounds like you’ve been been waiting a while to finally receive a diagnosis of fibromyalgia and arthritis in your knees. Sometimes it’s a relief to hear that there’s a reason for your pain and you can now start to get it treated.

    Why don’t you tell us a bit more about yourself and what the next step is in your treatment? If you have any questions or concerns, I’m sure our members will help answer them - we all understand what it feels like to hear that sort of diagnosis.

    The Versus Arthritis website is a very useful resource if you want to find out more about your condition and treatment options. You might find the page. below interesting - it’s talks about osteoarthritis of the knee.

    Do let us know how you’re getting on, and feel free to have a look round the forum and join in any chat you’re interested in.

    Anna : )

  • Hi thanks for excepting me!

    Im Natalie, 45years old and yes been waiting for approximately 31/2 yrs to be diagnosed properly.

    I was diagnosed originally via my GP with Poly Myalgia Rheumatica around 3years ago after presenting with high ESR blood levels and severe shoulder and back pain. I was put on a high dose of steroids and after a year referred to a Rheumatologist .

    He told me that it could not be PMR due to my age etc and that I would need to come off the steroids gradually and get ultrasound on my shoulders. My GP then prescribed me Naproxen for the pain but it literally only took the edge off!

    Unfortunately parallel to this my Ovarian Cancer returned after 6 years, whereby I had to have urgent surgery, and we’ve been in this awful pandemic, therefore quite some time has passed. I had my ultrasound and finally my appointment in November!!

    Since first originally seeing the Consultant , my condition has become really debilitating! It’s consumed most of my body and pain levels have rocketed! I’m really struggling with simple daily things!

    Anyway the final diagnosis in November was Fibromyalgia and arthritis of the knees.

    I have been referred to the pain clinic and prescribed Duloxetine . But I cannot start this medication until I come off another drug I’m on, which has to be reduced slowly! I’m nearly there, but it can’t come soon enough! I pray it helps! Because I don’t know how I can carry on living like this!!! Please anybody else taking this medication????

  • Rina
    Rina Member Posts: 36

    Hi Natalie, sending you a warm welcome to the forum. So sorry to hear about the pain you’re in - and the current situation we’re in can’t be helping. I have rheumatoid arthritis and don’t take the drugs you mentioned, but I know what it’s like to be in constant pain, and I just wanted to drop you a line to give you a very gentle virtual hug and to wish you all the best. They’re not open at the moment, but if you want to talk to someone the Versus Arthritis helpline is open from 9am-8am weekdays. They’re not medically trained but they are a listening ear and can give you information and advice. Their number is 0800 5200 520.

  • Thank you Rina I really appreciate it. Sending warm wishes to you also. Can I ask do you use any helpful gadgets to make life easier on a daily basis? I’m struggling picking things off the floor, getting dressed, on and off sofa or toilet etc ? I can’t even get in and out the bath at the moment 😩

  • Mike1
    Mike1 Member Posts: 1,706

    I have "grabbers" in every room to get things off the floor, and aids for numerous problems. Phone your Council's Adult Care department and they should be able to send an Occupational Therapist out to you who can both advise on items to help you cope better and may even be able to provide them, I have been given an electric reclining chair, perch stool, wet room and several other things plus stuff that I have bought. There are several good suppliers of equipment for the disabled on the internet.

  • Rina
    Rina Member Posts: 36

    Hi Natalie, All my clothes are one size bigger than they need to be and I only buy clothes with elastane in ( the more the better!) I rarely buy clothes with buttons, zips or velcro, and I wear crop tops instead of bras that I can just step into and pull up.

    I wear trainers, shoes and ankle boots that have memory soles ( so comfortable!) and I use a long handled shoe horn to get them on. I only buy trainers or shoes that have elasticated laces, and I’ve put rings on the zips on my ankle boots so I can pull them up easily. I also buy really stretchy ankle socks and stretchy leggings ( again, always at least one size bigger than I need) instead of tights. I can’t tell you the difference that elastane has made to my life!

    I couldn’t get in or out of my bath so a few years back I was lucky to be able to have a walk in shower fitted. Expensive but so worth it if you can. It’s got a pull down seat that’s really useful. I did use a plastic toilet seat riser for a while but have put it away now as I’m more mobile at the moment. We also bought two rather old fashioned armchairs for the living room - you probably know the sort . I don’t like the look of them but they are so easy to sit in and get up from.

    What else...I have an electric can opener and I open all my packets etc with scissors - so much easier than tearing.

    Hope that helps!

  • Thank you both for your advice.

    I am being referred to the pain clinic, who apparently can involve an Occupational therapist? But I will look into the councils adult care as due to Covid-19 I’m not sure how long I will have to wait.