Request for advice looking for possible new diagnosis

[Wispymisty]

Hi, this is my first time back on the forum after a few years break just bimbling along whilst struggling as we all do. But I've really hit a wall. I've also posted this on the Fibromyalgia and Lupus communities.I don't want to write too long a post so will try and keep the background brief.

Basically I was diagnosed with Fibromyalgia by my GP back in 2010 following a few years of firstly indescipt symptoms and then being hit by intense back pain (discs were suggested) over a few months the pain spread out to affecting all my limbs and after reviewing all my history (Raynaud's, migraine, childhood trauma, depression, IBS .......etc) I was told Fibromyalgia. I was so bad I had to give up my nursing career. GP also did an annual blood test for Lupus until he retired as he strongly believed it was a possibility in my case, but it's been refused since.

For the first few years, other than the grieving for the old me, I mostly coped especially with the support of my husband and kids. But I knew I was getting progressively worse.

A gastric issue got me eventually referred to a pain doctor although they didn't do much by way of assessment, and I did see a rheumatologist once who did trochanteric butsa injections for me, but seemed happy with my fibro diagnosis.

Some private blood tests threw up the probability of thyroid issues, but the GP ones didn't agree. A head MRI showed I have Empty Sella Syndrome and I was sent to Endocrinology but again no real input there.

Again I tried to just keep going whilst getting worse. Odd trips to GP with new symptoms which resulted in physio referrals but the physio would only treat the specific areas referred for and worsened other areas instead 🙄

I have cervical spondylosis in my neck (diagnosed 2012ish) and following a GP visit last November requesting further bursa injections I was sent for a lumbar CT which has now shown lumbar spondylosis with arthritic changes and mild disc bulges.

I asked for an MSK referral hoping I could have a corticosteroid injection to relieve that intense pain and allow me to try and get back to pottering, currently I'm stuck with my heat pad on constantly to try and get me through the day and occasionally having to take my Longtec (mst) which in reality is my go-to medication on days I need to actually do something important and I really dislike taking it on stay-home days.

The consultant at MSK was lovely and could clearly see how much pain I was in so didn't even do a physical assessment but told me he wasn't able to give a corticosteroid injection due to the new NICE guidance. Instead he referred me back to the pain team.

They say they are also tied to the same guidelines and won't do anything injection for me, not alter my medication review.

In addition to all the above (which is longer than I'd intended) over the last few years I've been experiencing intermittent elbow pain which includes the elbows swelling, going red and being hotter than elsewhere,with the same issue to my right knee. Over the last 18 months my fatigue levels have also increased dramatically and my recovery time from any activity has doubled or even trebled. I also get a lot of pain in my hands - tendons etc especially if I try to do anything craft related the next days are horrendous.

In my last phone consultation with the pain team, they have agreed to write back to the GP to request a full, back to basics reassessment with bloods (hopefully) to explore the possibility of an inflammatory condition (lupus, rheumatoid arthritis or other) being added to the mix. I don't have much knowledge of family history but I know my mother was diagnosed with juvenile arthritis and struggled throughout her life with flare-ups, and I have issues with,y eyes that my old GP thought was probably Sjogrens.

So in a nutshell (!) and hoping that the GP agrees to start afresh, has anyone any advice on notes I should take with me when I can get in, questions I should ask, and tests I should definitely hope are included in any blood tests?

Thanks for reading if you got this far!

[Beechwood1]

Hi there, welcome back to this forum after your break. The lovely ladies on the NRAS helpline 0800 2987650 are available with advice, just for a chat or as a great sounding board, Monday - Friday 9.30am-4.30pm, please give them a call - they'd love to hear from you. Good luck

[Wispymisty in reply to Beechwood1]

Hi Beechwood1 - thank you I definitely think it's a sounding board I need!

[Deeb1764 in reply to Wispymisty]

I would do that too I spoke to them 3 years ago when going thro one thing after the other and me thinking why no tests! The biggest issue is fibro tag means you get left alone as it’s oh that fits everything you have ie fatigue and pains etc. don’t let them push you into submission and if you can take some one with you to take notes or assist in meeting.

When my hubby comes with me to the consultation with Rheumy some reason we get more input and information and tests. Drives me nuts but 🥰

[Wispymisty in reply to Deeb1764]

Thanks! That's exactly it, isn't it - one size (one diagnosis) fits all for them. Luckily it's my husband who's even more convinced than me that something else is going on and wants me to keep pushing. I'm sure he'll be with at appointments and will make sure I get heard.

[Spanelmad]

Sounds like it's blood testing you need, have you got a friendly GP? That will do the full spectrum.

[Wispymisty in reply to Spanelmad]

One of them isn't too bad - I'm hoping the letter to them from the pain clinic will request that but I will definitely be asking for the full works anyway