my rheumy got excited

[suzannah16]

Rheumy appointment today. I gave her my written list of pains etc and she got excited saying it sounded like fibromyalgia and she had a leaflet. She is also arranging a podiatrist appointment and foot scan for possible neuropathy. She did ignore the possible erythromyalgia but 2 out of 3 is not bad going. It's a relief to finally feel like I am getting somewhere even if it does mean I can add another 2 things to my list.

[Lupiknits]

Isn’t it good when they get excited? So many are so far from that I wonder whether it’s part of the job description.

Sounds like you’re getting somewhere suzannah. Good for you xx

[PMRpro]

Don't let me chuck a damper in - but any rheumy who gets excited and suggests fibromyalgia is showing tendencies to be lazy. I see it as a get-out of jail card - for them, not you.

[eekt in reply to PMRpro]

But after the decades Suzannah has suffered, any progress to pain control can only be good xxx

[PMRpro in reply to eekt]

Fair enough - but fibro tends to be a diagnosis that then leads to "sorry, little we can offer..." Gabapentin and its like are all there is and they don't really work well. But because the F-word is on the file, everything gets blamed on it. Even when it isn't.

[eekt in reply to PMRpro]

Suannah's prob is not being able to tolerate anything other than paracetamol despite lifelong osteoarthritis, lupus, colitis plus plus so maybe there are surgical or other options? Don't know, just willing some progress xxx

[PMRpro in reply to eekt]

Not for fibro I fear...

[suzannah16 in reply to eekt]

she did mention possible surgery to remove some sort of nerve or something in my feet for neuropathy

[Angelann69 in reply to suzannah16]

Huh? That sounds a bit crazy. I've had neuropathy for quite a few years and never heard of this. Your nerves will die on their own and that's not a good thing for walking, driving etc. I hope you look into this thoroughly before agreeing to such a thing.

[suzannah16 in reply to Angelann69]

I will, sounded a bit odd to me too. I guess I will just have to see what happens with scans.

[PMRpro in reply to suzannah16]

I'd definitely be asking for a clear explanation from her AND, above all, a second opinion...

[KayHimm in reply to Angelann69]

I think her doctor is thinking about the possibility of a nerve compression in her foot. That is a different kind of neuropathy. It is not caused by an autoimmune disease. It is treatable. I am totally pain-free!

[KayHimm in reply to suzannah16]

Did she mention Morton’s neuroma maybe? That is like a compressed nerve in your foot — can be very painful. They can surgically decompress the nerve successfully. I had this problem and would be happy to help if it turns out you have it.

[suzannah16 in reply to KayHimm]

no she didn't mention that, but I will bear it in mind when the tests are done

[KayHimm in reply to suzannah16]

I think it is diagnosed on clinical grounds. The podiatrist will ask a lot of questions about what makes the pain worse or better and will listen for a click when examining your foot. Do your toes ever get numb? Does the pain get worse in pointy shoes?

[suzannah16 in reply to KayHimm]

toes get numb also a numb patch on top of my foot, I don't wear pointy shoes in fact I try not to wear any shoes or socks unless I have to. my feet feel like they are being squeezed all the time

[KayHimm in reply to suzannah16]

Hmmm .. sounds like some of my symptoms. Good you are going to the podiatrist. If you have a compressed nerve, there are conservative measures that work. I am symptom-free without surgery. Hoping whatever it is, you feel better. You need your feet!

[stiff19 in reply to PMRpro]

Here here I second that pmrpro. It’s happened to me😩 it is a lazy option for the rheumys I believe and a throwaway diagnosis to which each year the list of symptoms for fibro grows and grows to cover almost everything, why? To send you away and save finding out real cause of symptoms. When they said I had bells it was apparently due to fibro. 2 years later turns out not bells and waiting to see what it is , and I firmly believe my other symptoms NOT.

A visit to a and e and asked if I had any known problems, I didn’t want to say and nurse looked at me and said what’s wrong I said , diagnosed fibro but don’t think it is, she said yes I won’t put that down or they say everything’s down to it and I can see not.

Just saying 😡

I thought it was a diagnosis when all else ruled out yet for the rheumys who can’t fit you in a box it’s the first port of call. And I’m left with a lopsided face, buggered hands and feet and I’ll health thanks to such 😡

[eekt]

WOW sounds very positive suzannah, WELL DONE YOU! Hopefully this is the start of journey to proper pain med, after - how long is it? 30 years?? BIG HUGS 👍👌 🙌 xxx

PS an excited Rheumy...was that a Code Yellow? 😁

[suzannah16 in reply to eekt]

after her not recording erythromyalgia a couple of years ago I thought instead of saying have I got …. I would just present the symptoms and let her make the diagnosis. she also said she thought I might have had a flare recently and is going to check DNA etc. also got an X ray on spine done and said I would get a foot scan plus the podiatrist appointment. leaflet says fibro is something a GP can deal with so I can ask him about physio and pain management for it. at least an acknowledgement of the possibility of having something is better than her previous "occasionally sore feet"

[eekt in reply to suzannah16]

'occasionally sore feet' ?!? 🤯🤪 🤬 xxx

[Ingerfoot]

Well that sounds like a positive step forward to me well done and it’s nice the rumey was existed I hate it when you go in like cattle and your just in and out at least now you can try other things.

[Hidden]

It’s good to hear you sounding happier Suzannah and it does seem that your rheum is taking your symptoms seriously although EM is not Fibro and I hope they will put you to neurology for assessment. X

[suzannah16 in reply to Hidden]

it's thanks to you DR twitchy that I even found out about fibro and neuropathy and looked them up. my rheumy never seemed interested when I first suggested EM. does seem daft that I feel pleased to possible have them, but being able to go from "occasionally sore feet" to something with a name does feel good. even if they are incurable. looking up the symptoms things I hadn't connected are also explained.

[Angelann69 in reply to suzannah16]

I know what you mean. Nothing worse than not having a diagnosis but having the wrong one is worse. It took me years to convince my gp that I didn't have irritable bowel syndrome and in fact had chronic pancreatitis. Had to pay on my own to go back to the gastro who diagnosed me properly with an endoscopy to write a letter for me explaining my true diagnosis. It could be fibro but keep an open mind and hopefully she will too.

Feel better

[suzannah16]

what else could it be if not fibro? I already have lupus and arthritis

[PMRpro in reply to suzannah16]

Which can cause similar symptoms,

[Hidden]

Way to go!!! Doesn’t that make your day (when you feel heard and respected?) So happy for you!