The (not so old) Crocks Cafe -Part 2

Trialia

hannahO wrote: »

Also I might make an appointment with gp next week because I have never thought or looked into FM before. I had full blood test done for Lupus this year but the results came back as all normal. I still have numerous symptoms and my gp gave an answer to all of my 'symptoms' that it could be one of those thing type of twilight diagnoses.

Having read some articles about FM, I learnt that the symptoms overlaps but FM does not damage organs like Lupus. I also didn't know that hypermobility increases chance of developing FM which I have (scale 4/9). I had it since childhood and thought nothing of it apart from my arms and fingers looked ugly when it bent backwards.

Wow, yes. Very much so. HMS/hypermobility EDS dramatically increases the likelihood of having FM - I have HEDS and secondary fibromyalgia myself, and ISTR Ash does too (is that right, Ash?). I know plenty of people who have wound up with both - constant stress on hypermobile joints tends to set off secondary un-fun stuff like FM.

Good luck! And you're welcome, about the keys thing.

nanamoo

hi all, been having a rough time here the last few weeks, feeling like crap and having my eldest kid go thru surgery this last week and being back n forth with him as he couldnt keep his bandages n dressings in the right place for more than a day at a time. and then on-top of all that, my lil wonky kitty has gone awol and been missing for 3 days now

KxMx

*waves* Hi everyone, not sure how this works but am most certainly an (not so old) crock currently and would love to join in

Indie_Kid

hannahO wrote: »

Also I might make an appointment with gp next week because I have never thought or looked into FM before. I had full blood test done for Lupus this year but the results came back as all normal. I still have numerous symptoms and my gp gave an answer to all of my 'symptoms' that it could be one of those thing type of twilight diagnoses.

Is it possible that you have more than one diagnosis?

SingleSue

Hi everyone

Well the new funky crutch is better for my back/knees/hip but even worse for my wrist! The bone is now perm displaced and I have a lovely looking lump where it is displaced (sounds worrying but is actually quite normal for me, my right wrist is unstable, so visit to the GP etc not needed) and no amount of manipulating, which is painful in itself, will get it back to where it should be.

Think I need an even funkier type of crutch......

Anyway, second session of hydrotherapy and after passing on the instruction that I am not to be upright for the whole 30 minute session, the instructor/physio person adapted what I needed to do with times of me at the side of the pool relaxing my spine and rounding it..and finally told me what my extreme inward curve spine is called, apparently lordosis. So countless physio's, injuries etc since childhood (it is not something which has developed as I have got older, I was born with it) and I finally have a name for it.

I already knew that the very flexible ligaments etc didn't help with the inward curve but I didn't realise what problems just having this lordosis brought in its own right...why of why was nothing done when major problems started to develop at age 11-12.

The after effects of this weeks hydro was a lot better than last week when I was in huge pain for days but the walk back to the car was a tad difficult this week, mainly due to the fact that I 'lost' my left side...think I caught a nerve during the session as near the end, my left arm went into a shake, rattle and roll and my left leg didn't want to do what I wanted it to do, weird really as the left side is the strong side and it generally happens to the right side!

Hope everyone else is doing ok.

hannahO_2

I think it could be that I have 18 separate diagnosis sh1305. I may sound like a hyperchondriac but I am not worried about whether I have a brain tumour or some weird type of liver disease. Is it just coincidence that I keep coming back to Lupus type of symptoms which FM shares.

depression & anxiety
sensitivity to light & noise
poor concentration and memory loss
hives (take daily meds)
hypermobility
mouth ulcers
poor circulation in hands and feet
constant headache & migrain
pins & needles
ache in joint and other area
easily brused
vertigo
palpitation and heart fluttering which makes me cough
sore to touch
scoliosis
vitiligo
possibly tinnitus, swelling of feet
inflammation of the nail fold

My gp already knows that I suffer from anxiety so she might just say I am having a one of those bouts and it is not FM. But my gut feeling is telling me something is going on if not Lupus.

Indie_Kid

hannahO wrote: »

sensitivity to light

I have this and mentioned it to my ophthalmologist. (eye doctor) She said that there are some people who are sensitive to light; but there is no explanation for it.

Trialia

hannahO wrote: »

I think it could be that I have 18 separate diagnosis.

That is exactly what I thought before they diagnosed me with FM - and most of that list you just posted? Could actually be attributed to FM or HMS/HEDS...

hannahO_2

sh1305 wrote: »

I have this and mentioned it to my ophthalmologist. (eye doctor) She said that there are some people who are sensitive to light; but there is no explanation for it.

Photosensitivity could also be due to migrain so a lot of the symptoms are pointing to each other and it's like a loop. I don't know where the beginning is...it's a never ending story! e.g poor concentration and memory loss belongs to depression/anxiety but may be not FM etc

formaldehyde_perfume

I have a referral to a local rhuematologist for HMS anyway (actually want another referral to a specific pain clinic which my GP said only a rheumy could do) and I was going to ask about FM as I have a lot of the symptoms. How do I go about getting a diagnosis (or definite 'no') without forcing myself on them? The hospital said that they got the letter on friday and the team would look at it on monday so I should ring on tuesday, but I wasn't given any idea about when I would get an appointment so it could be 10-12 weeks under NHS guidelines (or so my GP said). Either way, I want to go prepared. Any ideas?