Myositis, Fibromyalgia, UCTD, Extremely confused

Bertie_brace2022

Hi All,

I am wondering if anyone is in a similar position to me and can offer any help,advice.

After 12 long years of trying to find out what is wrong with me, i was told last February i have undifferentiated connective tissue disease (Similar to lupus) I was put on all sorts of drugs which have done absolutely nothing. I had a follow-up in November 2022 and was told i now have a form of myositis as well as fibromyalgia. It was not explained to me well at all and i have basically been told to carry on with the drugs, Taper of my opiods, that i will start hydrotherapy and not to worry as i can try another drug. I don't understand "what a form of myositis" is as from my understanding there are 3 different types. Dermatomyositis, Polymyositis and Body Inclusion Myositis, surely i would have 1 of these three?

I have told my consultant time and time again that this is becoming unbearable, the drugs are doing nothing and i would like to try another drug. I have even gone as far as trying to find a specialist in Myositis (to which i can go private in London) i don't see why i should have to do this but im running out of options. As you can imagine, i am feeling rather fed up and feel like i am constantly being fobbed off. My consultant is amazing at what he does, i just dont feel i am listened to.

I am wondering if anyone else has had a similar experience to this, what drugs you take, if they work etc?

xxx

JessicaLizzie

Hi @Bertie_brace2022 that sounds really awful and I am so sorry you're going through all this and then having the additional burden of not feeling you are being listened to. I have Stills Disease but also told I have a connective tissue disorder but that they're currently focussing on the Stills as that's the biggest cause of my pain etc. I have heard a number of people find hydrotherapy extremely helpful so I hope that you find the same with it. Re the drugs - would it be worth writing down what you are wanting the drugs to do e.g. reduce pain, swelling etc and then list what, if anything the drugs are helping with? That way it is on paper and clear, and then alternatives can be looked at and over time you may see which drugs help with which aspects.

I have seen this website: https://healthunlocked.com/myositisuk who have an online forum like this so I wonder if some people on there will have experienced similar to you? I am sorry I haven't come across myositis before but do know that feeling of just not being able to cope with it all and needing help.

Best of luck, I really hope you get some answers and feel heard , and that your pain gets under control.

Bertie_brace2022

Hey @JessicaLizzie

Thank you for your message, I am sorry to hear you have stills disease.

Can i ask, when you were told you have UCTD did the consultant explain to you what it was? Do you take any medication etc?

I am just really confused how I have gone from Lupus to Myositis and fibromyalgia in the space of a year.. I know rare autoimmune diseases are hard to diagnose as many symptoms overlap with other conditions but all my results were pointing to Myositis in the first place. There also investigating me for Sjogren's syndrome. The mind baffles!!!

I take strong Opioids for the pain which i am now having to wean off as I have become hypersensitive which is a battle in itself. Steroids every now and which get me out of a hole. There my magic potion for when I'm feeling really bad (which is most days) not to mention all the other drugs i have to take daily.

They have talked about changing the immune modifier drug to metoxathrate and I am pushing for this as the hydroxychloroquine is doing nothing for me.

I really hope the hydrotherapy helps, Sadly this is now my 13th year and unfortunately i am quite used to the pain, fatigue, memory loss, and feeling so unwell. Sounds so wrong to say "I am used to it"

I am only 35, can't bare the thought that my life is going to be like this for years and years.

I know all of these things are trial and error but i don't understand why it takes so long..

I was thinking of going private and paying for Genetic testing. Not sure if you can even do this privately.

xxx

JessicaLizzie

Hi @Bertie_brace2022 - they never told me any further information other than that I have a connective tissue disorder but that can take a back seat while they try to get my stills under control. I know it is very common to have multiple diagnoses as they are investigating/symptoms change etc. I was initially told I had a virus, then that I had pyrexia of unknown origin, then just myalgia, then reactive arthritis, and now stills disease! They also dropped it on me a couple of weeks ago that I have steroid induced Cushings and Raynaulds, though I had already strongly suspected I had those without me telling them that.

I am 29 so 100% have the same worries about my future and thinking I can't live the rest of my life like it is now. I don't think people realise how much of a battle it is just to make it through the day, let alone do things like getting dressed and other 'normal' activities people don't think twice about. I am on methotrexate, steroids, slow release tramadol, oramorph for breakthrough pain and starting Anakinra (all being well) on Friday. I also have splints and ongoing support through OT and physio. I have a friend who studied immunology and she said it is one the scientific areas least understood in biology and medicine. It is so complex and a lot of the conditions present so widely differently from person to person. Not that knowing that helps us in any way!! I really hope they can find something that works for you - I find medication is such a trial and error process, which unfortunately means a lot of time suffering in the meantime.

Bertie_brace2022

Oh gosh, I can totally relate to how you feel also.

how are you finding the methotrexate? That’s next for me I believe.. I am on oxycodone and have been for a year now, it’s extremely strong and is the only drug that gives me some relief, it’s such a shame I have to come off it but I totally understand why. I have literally tried pretty much every drug going to help relieve the pain and ended up on this as a last resort!

have you ever heard of the wren project? I have joined them and receive support (we have a teams call ever two weeks) I have to say that it has really really helped. I would absolutely suggest having a look at them if you’re struggling.

I work full time and have two children, I don’t know how I manage it sometimes. Some days the pain and acheyness is so bad I don’t want to get out of bed.. do you ever feel like this?

xxx

Bertie_brace2022

i also get that you already had a feeling what you already had, I also thought I had myosotis after doing hours and hours of research..

I still research Lots now and can spend hours looking at case studies etc.

can I ask a bit more about your disease hun (if you don’t mind me asking) ie symptoms and when you first noticed?

did it show it your blood, scans etc?

xxxxx