Possible CFS or FM diagnosis. Again, hopefully not ALS.

Thanks pixie22. You have no idea how much this forum is going to help me pull through these tough times. I'm definitely looking to make new friends for support. 

Care me to share what experience you went through? The symptoms , tests and suspicions you came across?

Hi Jackie, could you reply to lastlaugh please. I think it's you who has suffered from air hunger. All I know is that whenever I have had oxygen it feels so right! 

Regards.

My first thoughts were also of CFS, which I have.  I also have fears of ALS.  It's a scary condition, (CFS).  Haven't finished reading the comments to see where this has gone in all this time.

new ntbook re mistakes, but jackie stating many are told its in their minds phycalogical, when they know its not, really annoys me, as lve had that with another health problem not easily diagnosed, not common, which really does make you feel worse, and adds to anxiety.   Many also have probs with speech at times and mental fog vagueness, so its possible your symptoms could be fibro cfs, but at least your getting the tests done, to elminate other causes.  best wishes

Hi Lynne, the mental fog is so frustrating and embarrassing, especially when you want to get a clear picture over to doctors. When I lost my voice a couple of years ago I put everything in a text and showed it to doc. Now I keep a running draft text and show it to doc. It helps me to make sure I don't leave anything out. Works for me. Hah!

Good idea, lve tried notes, whether they do any good l,m not sure, but at least l know lve told them symptoms. l at one time thought of getting ccctv put in my home, so l could film myself, so dr could see what a wreck l am at times, mornings like a zombie, just to  convince them how it was during the day.  Whatever it takes to get through to them, glad it works for youlol

Hi jk

Was it scary that you woke up one day finding new symptoms that you never seen before or associated commonly with cfs or fibro? Every single new symptom I get is giving me the creeps that my body will just cave in any moment.

l find it really scary not so much over new symptoms daily weekly monthly but that the symptoms seem to be gettin worse, and l dont normallly go on net or do anything much in morning, due to waking feeling shattered with fatigue, weak, stiffwith aches and pains, and the other bits, sore stinging eyes, thirst, sore skin, can barely function for 1-3hrs, but slowly do loosen up a bit to function at low level, essential minimul jobs 5min at a time, then rest 20min due to fatigue breathlessness, do a bit more, on a good day well okish day can with will power get a taxi into town, not to go around town, cant manage that now, so just to supermarket, needing trolley to support me, leaning on it. or maybe adventurous and try for l50yds and 2-3 shops, but needing 2-3 stops sitting on whatevers at hand, bench wall doorstep ledge,getting tireder breathless, if nowhere to  sit in trouble to stand lean, feeling embarressed and an idiot, but manage to do it and get home by taxi, usually on shutting door leaning on near stand for l0min to just get into sofa, unpack later.  Its an ordeal endurance l do 2-3 times a week, little if any pleasure, but alternative is settling for being housebound, what next bed bound, this is how l feel now, might feel a bit better this aft, as also after affects of30min light gardening being a garden lover couldnt stand to see it neglected any longer, for us on our own practicals a big problem, no  slave at hand to  help support.  But this is how l feel on a bad day at a bad time of day,,, l do at other times feel a bit better and can have a laugh as is essential to keep going, plus my little dog motivates and is a funny character that helps me. But l do know that l cant do as much as a month ago3month ago, 6months ago,soit is a big worry.  What makes it worse even, for me like you and others is not having exact diagnoses, and drs who are often  casual or fobbing off dismissive, meaning having to use more energy and becoming more anxious battling with them to accept that state your in and do more extensive testing, not leaving you for months or longer, livng live of a semi invalid. Worse in uk nhs now due to cutbacks, and competitiion. you at least sound like youve drs who are referring you for exact testing and to specialists, means something, l,m presently waiting to see rheumatologist a 4month wait after months of severe symptoms, now weeks away. Scuse long rant, just frustration at a system or drs who dont seem to understand or take it seriously and l know some do and are good, but some dont, anyway thats my feelings at present time. But wish you and all who are suffering and waiting best wishes.

I've just read through your post and I can really identify with how you feel. I have just one practical thing to mention - I find that in Sainsbury's and Asda ( and possibly some other supermarkets) I found there are motorised carts you can use to get round the store, you just have to ask at the customer services desk. I use them when I'm going through a bad patch (usually precipitated by a virus infection) and it reduces the energy I need to get round. And it is fun tootling up and down the aisles!

hi thanks for info advice, glad to hear l,m not on my own in the struggle to just shop, l can even recall way back in the past when trolleys had a crossbar, in mad moments standing on it and giving a push to get a ride, so sure l,d enjoy tootling up and down the aisles, got to have some fun doing it.

Hi Lynne, just to add to pixie's post. I had to go to Tesco on Tuesday. I went in without trolley cos I needed scooter. Sat on scooter, member of staff came to say it was on charge and other one just been taken. I sat there for a couple of mins then asked same member of staff if someone could bring me a trolley to lean on. She obliged. I only needed a few things but they were spread out over the store. On way out I called at customer services to relay the problems I'd had. She apologised and said that their policy is to find a member of staff to take me round in a wheelchair if no scooter available. I wish I'd known this! I got home and was stuck in car resting for an hour and a half resting before I could go in. My neighbours daughter saw me in car and came to say hi. I asked her to take my shopping upstairs to my flat which she willingly did - very kind 😌. The moral of this story is. Use the scooter, if not available, ask to be wheeled. We have much better things to do with our energy than struggle round the supermarket!

Yes, its adapting to handing over some jobs and energy sappingthings to others,  many will help when you ask, and l do ask more now, always pushed and struggled to do things myelf, l dont have a car but use taxi,s and get drivers to help often, if heavy item they will carry to door, or if gardening things put in garden for me, l usually tip them for extra time, in fact this week the first ever in my life l actually paid a gardener to cut my hedgerow, finally accepting l couldnt do it, and 5 min at a time would take a month be over grown again, so paid and now can look at it with pleasure and save my energy for light pottering which l enjoy.  l know what you meanabout the spread around items, l plan my outings as if on military operation, whats needed, where it is, route to take, l told my son l can spend an hour beforre setting off studying first if l can will myself to go and then the route, he looks as if not believing it, but same with household stuff, got to plan or l forget or run out of fuel, what weve to do.  My rest after jobs is usually fall onto sofa, and if l sit back l fall asleep, wake up feeling chilled and worse, as now following long nap, cat on knee, does it every time.  l didnt know they did that at supermarkets, l,d have to pick a nice young man, thanks for tip.

ps l do also get delivery,s from asda, and chemist, thats a good help, but somethings and sometimes need to get out, even if a challenge its of worth.

I had my friends round after ministry Tuesday night, (we take turns once a month so I'll prob do once every 8 months). I had to move furniture around to fit in extra seating. I did this on Monday. Also made corned beef hash on Monday. They looked after themselves and did washing up before they went. Today my son is calling round so he will be moving furniture back, storing spare seating away for me. I was exhausted, mainly because I had such a good time, but it was worth it. 

Hope you get your nice young man. Hah!

Although the after affects of fatigue and pain are a total drag, it does help or make it of some worth if youve got some pleasure and fullfillment from it and good memories, a bonus having your son round, just seeing them and having a chat means a lot, actually the job is the bonus  My two sons live away, one a distance so only see once or twice a year, other a bit nearer but stll only see once a week or so, he,s a busy job life, if my choice it would be daily, dont know if l,d go as far as wanting him to move back in, couldnt cope with the sight of his bedroom in present state, trying to get over my long standing natural touch of ocdl was near like monica on `friends`, itching to do jobs or organise in other peoples homes, now struggle to organise myself, after saying that, if my son knocked on the door or let himself in as he does and said he,d nowhere to stay, it would of course be come in, get your bed ready, mums.  Think he,s the only nice young man l have in my life, but can dream or live in hope.  ps your not from N.I are you.

Sorr Lynne I'm not sure where N.I is; is it Northern Ireland? I'm from Lancashire, near Manchester.  I see my eldest son once a week when he picks my grandson up from my flat after I've taken him for his swimming lesson. Like you, my other son lives away. I'm travelling to visit him at the end of July. It will take a couple of weeks to recover but, like you say, worth it to have the memories 😌. I'm happy to say that I gave birth to my two best friends. Poor things had to help me when I was really poorly - good practise for when they have their own families.

regards.

yes l did mean norathern ireland, lve cousins there and you sort of sounds ed like their phrasing, l know lancs friend in colne, lm over the border in yorks,   l had a close relationship with my sons growing up, loved those times, despite health probs then, which they did at times see the bad and sad, but tried to spare them as much as poss, we bought a camper van o could set off on spec to give them some fun advnture times, l,d have liked a daughtter but loved my boys just dont see as much of them as l,d like

to,  l,m sure your looking forward to seeing your son, be it travelling is very tiring at the time and after affects but worth going for it for the rewards.  Well take care lynne

Thanks Lynne, you take care too. I've enjoyed our chat. Hope everyone on this site has as good a weekend as you can.