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CFS/ME/Fibro/spoony support thread 2

(448 Posts)
LivingInMidnight Tue 19-Apr-16 21:57:08

Old thread here

daisychicken Tue 19-Apr-16 21:58:46

Just checking in.. I'll be back to post when the cotton wool feeling and headache eases...

LivingInMidnight Tue 19-Apr-16 22:06:46

moose sorry about your mum's appt. They should take into account hypermobility in the past, although I'm not sure if you need evidence - but what evidence would someone have? confused

Hi daisy! Feel better flowers

I'm off to bed now, was literally just bombing in to make sure we had a new thread!

sweetkitty Tue 19-Apr-16 22:10:56

Oh there you all are.

Am in agony tonight done far too much today my own fault.

Badders123 Wed 20-Apr-16 06:31:52

<limps in>
<limps out>

CFSKate Wed 20-Apr-16 06:55:52

More details about the ME conference.

DreamCloud99 Wed 20-Apr-16 09:06:57

May I join please? cake

I have CFS , not long diagnosed . It has ruined my life .

I'm typing this trying to actually see properly as I'm so exhausted my vision is blurred hmm

How do you all live with this ? Do you have daily symptoms or do they stop and come back every few months?

Does anyone here work with CFS?

I'm trying to adjust but I'm crashing every day and getting rather fed up sad

murmuration Wed 20-Apr-16 09:41:49

My gastro appointment is today! I completely forgot that was coming up.

He seemed like a pretty clued up doctor, and had known what POTS was. He was stern with me about not losing any more weight, and I got upset about that - at the time I was still overweight and it wasn't like I was trying to lose weight so fast. But now my weight loss has slowed, although I've still lost some. Not sure what the response to that will be. Also feel weird as I stopped taking the stomach meds from the GP entirely, and take the one he prescribed only sporadically. Already told this to the GP, but I don't know what the gastro will think.

I'm bringing about a month of report from MyFitnessPal to prove that am actually eating an adequate number of calories, although I know my diet is terrible due to feeling so ill and use having takeaways and low-effort food for the last few months.

I also thought I make take this opportunity with a specialist to ask more about POTS - I'm bringing the letter from my US and my BP/HR record that I sent my friend. My friend had actually suggested a 'gastric emptying scan' was something that would be good to get done, and it seems like a gastro would be the one to order that. I feel a bit weird as I've never showed up to a Dr with 'here's what I'd like', so I really don't know what I'm doing here.

Hi, dream. Let me offer the typical welcome coupled with sympathies that you have to be here.

I work full time with CFS and/or POTS (no official diagnosis yet, although my CFS/ME nurse said he could write me a diagnosis for CFS if I want, so I guess that counts? It was in the context of getting accommodations at work, but I didn't need it as I got the accommodations just by asking). Oh, in case you're interested - my accommodations are that I work 'flexi-time' - full time over 4.5 days. I come in an hour earlier each day and take one afternoon in the middle of the week off (during which I come home and sleep). This has made a big difference in my ability to cope.

To answer your other question, my symptoms seem to cycle on large timescales - I was feeling quite good last summer, but have been really struggling since November. I am slowly building my life back up, but I'm still only at about 60% of what I was a year ago this time. Although two months ago that was more like 30%, so it is improving. And on a finer scale, I will have bad days and good days during a week - normally if I push myself too hard on the weekend, I can feel quite bad by Tue or Wed. If I stay home and rest, I can recover, but if that's not an option, I'll continue to struggle all the way through the next weekend.

DreamCloud99 Wed 20-Apr-16 11:37:08

Thank you for replying smile

It's good to hear you get a break from the symptoms in a cycle at least (not great but you know what I mean) . I'm amazed you are managing to work full time !

My symptoms are so erratic they vary from hour to hour , daily . It's very hard living like this .

I have pre school aged twin boys too and DH works full time so it's just relentless .

flowers for all on this thread .

Actually , forget the flowers cake - life is too short !

HyacinthBouquetNo1 Wed 20-Apr-16 11:40:43

I am not doing too well today, done quite a bit of housework and walked for 10 minutes to post a letter, felt terrible when I got back, my right hip is hurting and I am still dizzy and just sooo knackered.

I don't work anymore, I used to work full time, then dropped a day, but couldnt even manage that! I wanted to drop more hours but my manager said it couldnt be done so I left. Luckily my DH earns a good wage, or I dont know what I would have done, I tried for ESA but was found fit for work even though the Dr doing the assessment said it sounded as though I had MS ( this was when I was waiting for my lumbar puncture and I had got the brain scan back with loads of hyperintensities in white matter on it) LP was normal so I remain as "watch and wait". Diagnosis of fibro, but I am more fatigued and weak than in pain.

I have started working as a volunteer in a charity shop for one morning per week and that is very tiring but I am determined to keep it up, otherwise what else is there for me? I don't think I will ever be employed again, some days I can barely stand up!

hate this freaking illness

moosemama Wed 20-Apr-16 13:06:09

Just making sure I can find the thread again. Will come back, read and post soon.

Squirrelsmum Wed 20-Apr-16 13:32:02

Checking in, diagnosed with ME 4 years and fibro 3, went to the rheumy yesterday, he gave me a script for methotrexate, says I've got RA on top of the rest of this shit.
I'm sore, everything hurts, I can't sleep.
I work full time, it's really hard some weeks but I refuse to stop just yet.

LivingInMidnight Wed 20-Apr-16 17:24:20

Oh squirrels that's awful flowers

I do 30 hours over 5 days with hms/fibro but I'm really struggling atm.

DreamCloud99 Wed 20-Apr-16 18:02:04

Sorry to hear there are others going through this (I'm new to the thread so don't know backgrounds of posters) flowers

I am really really struggling this week sad

The fatigue is crippling , I can't stand for very long or think straight . The twins are hyper and I just can not fathom the energy other than to lie down .Ive barely seen them all day so I'm feeling guilty too .

They've been at pre school today and I'm so crushingly exhausted and foggy I've done nothing but cry all day .

I seriously feel like I want to die (I won't do anything daft obviously) but I just don't know how much more of this I can take sad

I'm due back to work tomorrow after 6 months being sick and I don't know how the hell I am going to get through the day .

Really really struggling with my symptoms being all over the place - there's no pattern or control and I don't know what I'm supposed to be doing !

I'm not depressed , I just feel totally overwhelmed and emotional .

Sorry to bring the thread in to melancholy - but I have nobody in real life to talk to sad

LivingInMidnight Wed 20-Apr-16 19:39:47

Argh dream I think we all can relate to that! flowers

The only way I can do it is by literally not giving myself any other option. I wake up and autopilot kicks in to get me ready (takes forever, I'm sure someone hit the slow motion button on me) and on the way to work. Once I'm there I just carry on as best I can. It probably depends on your job but I can sort of do my pacing stuff with my work. I try and plan my week out, and I know what days I'll normally be the er... Least confused? So I'll try and get the more taxing stuff done then and do relatively minor things the rest of the time.

I am falling behind a bit a lot with the more taxing stuff lately. Bit concerned about that. My manager is completely baffled by the whole fatigue and pain thing but I'm used to that now!

LivingInMidnight Wed 20-Apr-16 19:41:26

Oh and have you got reasonable adjustments? They help me so much!

sweetkitty Wed 20-Apr-16 22:09:31

Can I come in? Lying here in agony feel like my knees are on fire well my whole legs and pelvis. I limit myself to 4 cocodamol a day and I've had them all.

Did far far too much yesterday, worked a half day in school (volunteer) came home with all these plans and fell asleep on the sofa, been so tired and snappy all day. The poor children .

murmuration Thu 21-Apr-16 09:23:43

Oh, dream, that sounds tough! How is today going? Do you have some kind of phased return to work at all?

Went to the gastro appointment, and distressed. He was very upset that I'd lost weight and I also never received my Dietician referral and so missed the appointment in Feb. He was also very patronising and when I asked if things could maybe be due to POTS and showed him my BP/HR record and suggested I thought maybe I did have it, he said that of course I had it, I was prescribed drugs for it in the US so clearly I do. It felt very attacking, and especially as my previous interactions with the people who handle POTS were to throw it out and say I have depression, I don't really think it's unreasonable for me to looking at this and investigating it!

I now think it is most likely the gastro issues were all down to POTS, but now I've gotten their attention and he wants me to gain weight. I'm right at the very top of healthy BMI - why would I gain weight? I was just so pleased that I can eat three meals a day plus snacks without getting ill or having pain, I felt like things were good. But apparently I'm in deficit and need to catch up. Its so hard to get my mind around as just 10 months ago when I was obese all I heard was 'you need to eat less' (I was eating 1200-1400 cal/day) and 'you have to lose weight' and now I'm eating 1600-1800 cal/day, and I'm really just not hungry for more! It was distressing when I was hungry and couldn't eat because I was sick and/or in pain when I did, but now I can eat the food I want when I want. Why should I force myself to eat more - in order to become overweight?

He's re-referred me to the dietician, and this time I will phone the GP if I don't have a letter in a month. I'm just worried all this super-detailed attention to my eating will create some kind of problem. I don't feel I have an eating problem now, but I'm starting to feel very scrutinised and like everything I do is wrong, and starting to second guess all my food choices. And I worry that if this continues it will cause me to have some kind of eating disorder. Why can't I just eat the food my body is hungry for? Yes, I'm losing weight, but a pound every 2-3 weeks. Before I was losing 3-4 lbs every week, and that was concerning. But eating as much food as I want and stopping when full and very slowly losing weight - when I could still lose another 36 pounds before being underweight and 25 pounds before I reach the weight I spent most of my adult life at before my health problems started.

Sorry, this is just really bugging me. I now regret going to any doctors at all. I should have just been happy I was losing weight and maybe it would have stopped on its own just like it did (although, to be fair, I am still using the anti-pain drug and it is helping, so maybe it would not have).

LivingInMidnight Thu 21-Apr-16 15:49:07

murmur in the last thread moose suggested that I could talk to PALS to see if I could change neurologist - would it be worth you doing this? He doesn't sound like the right doctor for you at all.

I would hold off changing anything food wise until you've seen the dietician, for all the reasons you've listed above. I agree with you about the eating disorder. I had one when I was a teenager (although you wouldn't guess looking at me now!) and I'm still struggling with food now to an extent. If you're happy with what you're eating and you aren't purposely loosing more weight just wait and see what they say.

Do you or they actually know why you were loosing weight? I'm sorry if you've already mentioned it, I was just wondering what the gastro was supposed to be doing.

Don't regret going because there's no point! Keep moving forward. I think your GP would be able to refer you to a more appropriate department for your POTS issues. Doctors aren't always that interested in stuff outside their own field so you might have better luck.

AliceInUnderpants Thu 21-Apr-16 22:22:38


Will check back in later but not up to much right now as I fucking stupidly thought I felt well enough to mow a wee bit of grass after doing nothing else all day angry

murmuration Thu 21-Apr-16 22:44:26

Thanks, living.

No, they have no idea what went on. The cause for the weight loss was pretty clear - I wasn't eating! smile I may have been manageing 800-1000 cal/day. But the reason I wasn't eating was that I was getting extremely ill if I ate in the evening, and if I ignored that and ate anyway, I got massive stomach pains. And then the problems started creeping earlier and earlier into the day until I could only eat half my normal lunch, too. So the gastro was meant to check and see if they figure out what was happening.

I got a PPI to address the illness, which helped a very small amount, but also made me very fatigued and I stopped it about a month ago. The gastro gave me a smooth muscle relaxant which has succeeded in stopping the pain. And as long as I take that occasionally (although not the three times a day it was prescribed for; I just couldn't remember!), I don't seem to have any trouble with illness either.

I forgot to mention he also told me not to exercise. Which is a very easy direction to follow, given that I'm so exhausted I barely manage normal life much less exercise too! But I'm staring to wonder if he's treating me like I have an eating disorder already? As maybe he couldn't find any reason behind my symptoms so decided I was just refusing to eat? It just seems so weird to specify to someone that they should not exercise. But I'm now remembering a friend with anorexia who was absolutely obbsessed with exercise - is that a characteristic of it?

When I saw him the first time he gave me a stern talk that I "needed to eat" and if I didn't they would have to tube feed me. I found it weird as at the time I was desperate to eat and very hungry, and was eating as much as I could within the limits of illness/pain.

But now I get hungry, I eat, I get full, and I stop. I'm not stopping because of some extra illness or pain like before, just because I don't want more food. To me that feels like a very positive result. Yet I came away feeling like I've done wrong and I need to take what was a good experience - I can finally eat without pain! - and force myself to eat more than my body wants and be uncomfortable after eating again.

moosemama Fri 22-Apr-16 09:51:12

murmuration it does sounds like he's decided it's psychological, rather than physical and if I were you I'd be wanting a second opinion. From what you've said, he should have been looking into slow transit and/or gastroparesis (especially if the muscle relaxant helped) causing early satiety. It seems very strange he's threatening tube feeding when you have a normal bmi. confused

Would you consider applying for a copy of your medical notes? That way at least you'd know what they were thinking.

Sorry I can't be more supportive at the moment, I've had a migraine since Tuesday. It's switched sides now and the painkillers are only holding it back - it comes back full force as soon as they wear off.

I have ds2 home today. His legs gave way under him on the doorstep this morning and he landed full force with both shins on the edge of the next step down. Don't think anything is broken, but he's badly bruised and in a lot of pain. It was the strangest thing to see happen, looked for all the world as if he threw himself head first out of the door. One minute he was being cheeky and laughing with me, the next he was on the floor screaming in pain. sad

DreamCloud99 Fri 22-Apr-16 13:33:52

Hello again!

murmuration that sounds so frustrating ! Agree with pp that your doctor seems to think the gastro issues are psychological. I hope you get some answers soon .

I made it in to work - for 3 hours blush . I had to go home and my as I was covering holiday my boss was less than impressed .

I'm now being assessed for disciplinary sad

This was part of my return to work schedule and I haven't stuck to it , so they are not happy . I think I'm going to lose my job sad

LivingInMidnight Fri 22-Apr-16 15:58:35

dream don't panic! Are you on phased return?

moose flowers feel better!

murmuration I agree too, he's decided it's physiological and run with it. It sounds like you have great eating habits to be honest. Eat until full then stop.

DreamCloud99 Fri 22-Apr-16 17:43:24

Yes I'm on phased return and now I haven't stuck to the phased return sad

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