Spoonies... friendly support for anyone with chronic pain & fatigue

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

Spoon Theory Here

Old thread

Beyonddid you say on another thread that you got an Elite Go Go? How is it?

Heres mine... (Its the go go elite traveller)

www.careco.co.uk/item-p-ms01009/pride-go-go-elite-traveller-4-travel-mobility-scooter.htm?gclid=CL6tw7mFjMACFRHHtAodbT8ApA

(Bought it from careco too, cant recommend them enough not affiliated in any way! )

Its great - for going up and down the kitchen. I havent been out on it yet (dh likes to whinge about this!) im paranoid its going to break down so wont go out on my own, as well as worrying how people will react, and havent been for a "walk" with my family recently. Have become quite a recluse :( once i do it, im sure i'll be fine, its just that first step...

The initial funding target for the UK Rituximab trial for ME has been reached

Beyond do you reckon you could dismantle/put it together/lift all the bits yourself? What ever I choose would have to live in the boot of the car... I would mostly have dc to help but there will be times/come a time when I don't... I can't visualise how feasible it actually would be if that makes sense!
Can you just go down the road a bit and then home or to a local park and back the first time or so? Perhaps when DH is home 'just incase'? I'm sure it'll be fine Its the reactions of others that does concern me I have to admit... but I'm fast coming to the conclusion of 'so what' if it means I can spend time out with my family..

I dunno, its quite heavy together, but havent tested the individual pieces. I'll see if i can get dh to help me dismantle it later and let you know. My wrists are bad though, so thats gonna make it more difficult?

The one we had on holiday was pretty heavy. But I could do it myself at a push. The battery is heavy but comes out to be dealt with separately if need be. The seat also comes off. But the frame and handles are still pretty heavy. I think they are about 35 ish kilos altogether.

It was a nightmare getting it down stairs for the tube, took two strong men. So don't do that. I learned a LOT.

I did get a few long looks and double takes but I expected that and just cheerfully ignored them as much as possible, got on with chatting to kids etc. I expect I'd get used to it.

Just realised i didnt tell you all about my bad jaw. Weeks ago i had mystery jaw pain, was keeping me up at night and nothing helped, so saw the ooh gp who basically said its nothing thats gonna kill you and sent me on my way (apparently a heart attack can manifest as jaw pain!)
Went in for routine bloods a week later and phelb told me i had to see a gp as it was still bothering me. Glands up by this point, but werent to start with, so he said its probably an infection, come back in a week if it doesnt pass. Not in the right place to be tmj arthritis and not my teeth (dentist also confirmed this since)
It comes and goes for the week, so i see my gp anyway, and she gave me the gabapentin and ran blood tests thinking it might be secondary sjogrens.

Went back in yesterday, and it had come back on the other side, so could describe it to her while it was there. Said me teeth all on one side feel tender, but theyre fine when i poke them, and the tenderness goes right along the bottom of one side of my jaw, and right up to my ear. Then the pain that comes and goes feels like someone stabbing my jaw (right in the dip in front of my ear lobe) with a hot poker and wiggling it round.
GP says bingo, that sounds very much like trigeminal neuralgia, keep upping the gabapentin.

So, now my hypochondria is going off on one...
Trigeminal neuralgia is apparently rare in under 50s (im 28) and is often the first spotted sign of ms. Ms also seems to be more prevalent among people with eds.

Oh, Beyond. To be honest, I assumed that I had Ms when I first went for tests. I had numbness weakness and tingling down one side. But nope, no lesions, just a narrow vein in my neck which they are treating as a poss cause of my symptoms. And which is also a possible cause of Ms. Bodies are weird.

My one arm spasms too, ive already told my gp that and she says its just cause of the arthritis/hypermobility. Thats what im worried about, that so many symptoms cross over and are already attributed to something i officially have.
Thats what i worry about, its not so much having something in particular, if thats the case i just have to deal with it (i do this a lot, i get very anxious about my health (and my kids). But it that cause of anxiety or cause ive actually had something wrong all along that took til 27 to be diagnosed!). Its that it'll be missed, or i'll be written off as a hypochondriac.

Can I join in here please? Saw this thread linked on another post.

I am 30 and have a working diagnosis of Fibromyalgia. After years of to-ing and fro-ing the doctor I have recently been seen at the pain clinic. Consultant there is not convinced it is Fibro and my next step is to wait for Nerve Conduction Studies to be done. Neurophysiology advised 4 month wait, so looking at end of October but still awaiting appointment. Consultant also unsure why GP hasn't done more testing and ruling out of other conditions.

I take 600mg pregabalin daily, slow release tramadol at night, and 1-3x 50mg tramadol during day as/when needed. I also take 20mg citalopram.

I am currently in fatigue phase. Got up at 7 this morning, got the kids sorted for school, relaxed on sofa for morning before sleeping from about 12.30-3.10 (miraculously woke up just before having to collect DC from school!) They left with their dad about 4ish and I've been relaxing on sofa since. Have been struggling to stay awake for the past hour or so, but hoping to try to stick to a routine now kids are back at school.

Would be nice, and helpful, to have people who understand.

Also, just felt like mentioning.... it made me feel thinking that I am posting on a thread entitled 'disabled parents'. I guess I am still coming to terms with that being what I am (becoming?) Recent months of varying fatigue and pain are starting to make it evident to me that I would be unable to work if I needed to though

While I was using my mobility scooter on holiday my daughter kept asking whether I was disabled and it made me so uncomfortable.

Hi kinky! Welcome to our humble abode

I've said it before, but I'm owning the disabled label :) if i dont treat it as a negative thing, maybe others wont see it as a negative thing, and just be accepting of my body being a bit wonky at times. Took me a while to get here though.

Took my scooter out today. Only one negative comment, from an elderly disabled relative of mine, who said "now you have one of them, you wont bother walking anywhere and will get fat". Yeah, cause before i was walking so far when i was stuck in the house for months on end Would have thought someone who is so bad mobility-wise that they have to drive everywhere would be a little more understanding, but meh.

My scooter is fab. Carried me and two kids (one on the front, one on the back) up and down some big welsh hills

My kids would love it if I ever got a mobility scooter. My grandparents have them, and the kids love hopping on their knees and going for a wee cruise around the block hahah

Beyond do you think your relative was projecting her own concerns and insecurities on you?

Perhaps yeah :) sadly, his decline in mobility did partly come because he wasnt walking, and now he cant. When he had his bypass, he moved in with my parents to recover, and every day would walk up and down their street. When he went home, he had to look after my nan again and his own health comes second

It was the "wont bother" that hit a nerve. Probably also because at one point my nan asked whose it was (she has alzeimers, so i already have to explain a few times why i cant walk when i visit) and he said "its beyond's, shes lazy" :(

Sorry for assuming it was a female, not quite sure why I did that.

He sounds like a bit of a lost cause, tbh

I didnt notice the 'her' :)

I do notice a particular attitude from other people in that side of the family. Almost that having someone in the family with a "real" disability coupled with previous knowledge of me being a drama queen/hypochondriac means i cant possibly be as bad as i make out :(

Invisible illnesses are so difficult to 'convince' people if they've never experienced one themselves. I sometimes wonder if people would take me more seriously if I had gunshot marks all over my body

Okay, got the mobility scooter today. I got a Calibri in blue. I got it from a local mobility centre and it was no more expensive and I got to try a few out. This went a bit faster than the others and came in different colours.

Cried a fair amount on the journey home but also started thinking about things we could do that would have felt too tricky before, things like local country park, National Trust day out, etc. Little things but huge cost to me if they are different than expected or we need an extra trip to the loo half way round.

So. Mixed bag today but will be good.

Hi all. Been offline a bit, and don't remember my status last time I posted. But status now is GP has referred me to neuro and CFS/ME nurse, and old Dr from US is trying to look up stuff for mr to write a letter that I can show the neuro -- hopefully his written report will have more of impact than my verbal one.

Holiday visiting family with 2yo tired me out, and then I got a stomach bug first day back at work. Still weak from that and next 3 weeks of work will be among the busiest all year. A bit worried I'll crash and dramatically mess something up :(

ithas, I wonder about how to tell people too. Haven't posted anything on Facebook or anything, and I don't really know how to say things. Especially since about half the (very few) people I've told in person have either seemed to not believe (oh, of course you're tired, you have a 2yo) or have actually said they didn't believe in CFS.

NiceRing how are you getting on with your scooter?

murmum how are things going at work? Are you managing to keep things under control?

I have had really intense nerve pain the past week so visited a locum GP today. He suggested the only change of meds could be to change me from the pregabalin to 3600mg of gabapentin! I'm reluctant as it seems to have more side effects.
My friend (who came with me to kick arse) asked about an MRI and he said with my symptoms they wouldn't know where to target the MRI so it would need to be full body. I asked why they wouldn't do that - and he has finally referred me to neuro! Yay!
Found out last bloods were done in July 2013 so I've asked to get them redone, getting them on Monday. Also going to check my Vit B12.

Good news about the MRI, kinky. I hope the pain doesn't get too bad :( And by the way, welcome!

So far managing at work, although I just sent something off that is supposedly done and I'm not really sure. I kept catching rather sizable errors right at the end, so there could be more I didn't see. But I'm already past the supposed deadline (yesterday!). Oh well, if there are mistakes I'll just deal with the fallout later.

I worked from bed at home today, as I got really ill after eating breakfast. Thought I'd go in for the afternoon, then ate lunch and got ill again. I think I may have to eat in really small quantities for a while.

Tomorrow I have DD all day as DH is at a conference -- will be taking her to/from swimming on the bus. I hope it doesn't tire me out too much!

So my bloods came back all satisfactory For most, that would be good news; for me it just leaves me a little... lost