Spooning into summer - life 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.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Hello, everyone. Can I come back ? This thread is so informative, and chatty, and lovely.
I am leaving my job soon for various reasons, I can work doing what I do but I need a break. I am going to work for myself in the same field next year.
Thank goodness I have a supportive DH.
Its been a tough year and a hellish fortnight.
Stress is a killer for me - it goes straight to my leg, ifkwim.
Goodbye hassle, bullying and sneakiness at work.
My general well-being is important in order to control my pain and I am blessed in that I dont have to put up with it anymore.

I take ages to get up too. Partly the effects of the ami, but mostly the POTS - have to come round gradually, then sit myself up and get used to being upright for a while before slowly edging towards the side etc. It takes about an hour most days before I feel ready.

I keep meaning to take water up with me though as apparently it helps to drink some before you get up.

I have good and bad news.

The good, I have been awarded DLA. Looking forward to telling the CAB volunteer who helped with the form. Going to apply for bus pass etc (not blue badge as we don't drive) but am a but confused as to how it affects housing benefit, tax credits etc?

Bad news is I am really freaking out about this pain (around ovaries), DH is working tomorrow but I might go to the urgent treatment centre on Monday if it's not better, the GP said I should if it didn't improve :(

And welcome Emmeline!

Bugger! I can feel a relapse approaching...:(

Hello all. I do read a lot of your posts, but don't really feel like a member of the thread anymore, so don't post much about anything.
I hope you are all keeping a spoon or two for yourselves.

Hullo Solo, I too had a good patch, but the acupuncturist did something yesterday and now I'm back in bed all dizzy. She came out on a rescue mission earlier so I might feel better tomorrow. Glad you have been okay, if you have a relapse you know where we are.

Emmeline hello! Just saw another post of yours in which you sounded so cheerful...this change is obviously right for you. .

Solo. I have come back. I read the posts, but sometimes prefer to lurk than post. It depends on how I feel.
I do appreciate the advice that I read here - a lot of it has helped me.
I wonder if that is how you feel ?
It doesnt matter if you dont post, we are here.

if you know that a relapse is approaching, can you prepare ?
I dont know your circumstances, but have you plenty of meds, food in, etc?
I dont mean to be nosy, you just sound very low to me.

building - yes I do feel better, the strain was terrible.

Fuzzpig my Dh brings me tea (herbal) in bed, because I am so slow in the mornings. Lovely Dh! He used to do this frequently (on days when I did not have to get up first) even before I was ill, and was my little luxury and made me feel special even when I had been up half the night with ds. When he is away I take a thermos mug to bed with me with boiled water, ready to accept a tea bag. - ds is old enough to know it is not to be touched. I am partial to the liquorish and mint one called Moroccan blend.
I am concerned I might be relapsing too. Hope not. Maybe its the colder weather just making it feel harder- yes I think (I will pretend) it is that. Building and Solo hope its just a temporary set back for you both. The cold has really got to me but the thermometer seems to think it is still quite mild, as I sit here shivering, wishing I could hibernate. Best wishes with your change to working for yourself Emmelinelucus and congratulations on being brave enough to take the step. I think accepting that I would not be getting back to my pre-illness hours was a turning point for me, in starting to get more stable and well.

I've been shivering in the cold too magso!

How funny that there are more people who get tachycardic! I also get breathless -- I kept getting handed inhalers for 'exercise-induced asthma' before they figured out it was my heart. I guess because all the breath tests showed fine lung capacity, they concluded it was only when I exerted myself that I had it? The inhalers did nothing, of course, because it wasn't that my airways were constricted, it was that blood was moving through my lungs too fast to pick up enough oxygen.

I can't think of anything in my life that coincides with the onset of the fatigue. A year before, however, I had a really, really horrible time at work with a woman I can only describe as a sociopath. It was a very stressful time, and I got facial ticks and pain in my hands and feet. Can there be a lag to the effect? But I really don't want to credit that terrible woman for this lasting effect on my life.

I really relate to the emotional thing -- I often find myself near tears and the only reason is that I am so tired. If DH asks me what's wrong I'll start crying and say, "I just want to sleep!" :( Got that like yesterday, with happy little DD babbling away and climbing all over me, and all I wanted was some rest.

Oh, fuzzpig, I hope your UTI clears up and that nothing else is a problem

Really glad your DS is loving nursey, helibee! And congrats on the job, altogether!

Hope everyone is ok this foggy Monday.
Could anyone give me any advice or their experiences on using molipaxin please?
I take 100mg tramadol twice a day plus 30/500mg cocodamol if needed. Anyway I have been taking 2 x 10mg amitripyline at night to get some rest. It hasn't been great at helping me sleep so the GP prescribed the molipaxin. I haven't taken any yet but any concerned with feeling drowsy for the next morning. I have realised that the amitripyline makes me feel foggy the next day. I didn't ask the GP about this as I have just realised how I have been feeling. I know that sounds stupid. I just thought I was tired as I don't sleep well but it's more than that I think! I would like a nice sleep, not for hrs and hrs but maybe a couple of hrs of good quality sleep that leaves me refreshed for the day ahead. Or maybe I should just accept that that isn't going to happen for me

Hello all,

I've not posted for a bit... I'm finding concentrating on anything more than FB really difficult. I should be at work today but DS split his chin open at the weekend (on his birthday! ) and it's infected. He had a rough day yesterday and I felt like we both needed time at home. I guess we're kind of skiving but I slept til 10.30 this morning so clearly needed the rest. I'm still not dressed!

My GP referred me to the ME clinic to help me manage my fatigue but, because I have a diagnosis of Fibro, they won't see me. My GP won't listen that it's fatigue that cripples me. And when I can't address that, then the pain starts... it took 10 months for me to get my pain under control last year and I just don't want that to happen. Yet I feel guilty if I don't go to work because I'm 'tired'. I don't know how to manage.

Love & spoons to all x

Just read a bit about others having tachycardia... is there anything you can do for it? My heart is so fast sometimes & always on ECGs. I get so breathless, I feel really unfit. I wish I could stop my heart racing.

Sorry you are home unwell Grockle, and hope ds chin heals quickly. Oddly my ds has some nasty grazes on his chin and shoulder- from another child exploding armed with a rock- well that was ds description, but I don't know what really happened! His face was looking better today so I sent him to school.
Its very frustrating that the ME clinic won't see you. It is silly especially since FMS and CFS are often diagnosed together. I had the same trouble once my local CFS lot found out about my tachycardia - I was discharged because any other diagnosis 'trumps' the CFS. I have not found a reliable way to treat it, although the cardiologist suggested some things to do for the hypotension and fainting. (clenching bum muscles when standing, jiggling feet up and down when sitting, eating more salt, drink more water. I don't think they help at all with the tachycardia. Beta blockers were suggested but no use to me due to also having asthma. The breathlessness makes me feel very unfit too - its embarrassing, and then I often get quite wobbly and uncoordinated like a drunk, which compounds the embarrassment! I think the D-ribose I am taking has helped a little but I still have tachycardia -just a lighter lead suit IYKWIM.
Spoons to you and everyone

I'm taking making that works for my tachycardia. Unfortunately it is off-license in the UK, so it probably won't help anyone else -- but it is bupropion (Zyban), which is an anti-depressant and anti-anxiety. I was prescribed it in the US, and when I came here they initially put me on venlafaxine (Effexor) as the 'closest' thing. It sort-of worked. It got my active heart rate down to 170-180bpm, whereas unmedicated it can be 220-230bpm. But that's still quite high! And enough to make me quite breathless from just a short walk. So after about a year, my doctor arranged for me to see a psychiatrist who could approve the off-license use, and I've been on it since. Now my heart rate is basically normal (i.e., I can get it to 160bpm with really heavy exercise, and mild exertion is not noticeable). They did mention beta-blockers back in the US, but a series of coincidences had me take the bupropion for something else, which then completely cured the issue I was visiting the cardiologist about.

Does anyone else with tachycardia also sweat a lot? Without meds, I would sweat buckets. I'd have to bring changes of clothes to work, as the ones I wore in were soaked.

And oh, that sounds quite bad about kicking you out of the CFS clinic if you have any other issues. I guess if I ever get a diagnosis, I won't be allowed in one, then, since I already have another issue.

Rubbish, isn't it? Interesting to hear other peoples stories, especially re tachycardia. I guessing stuck with it. I do the drunken walk too & generally look a mess. I am up & ready for work now but know I should be at home resting. I hate feeling so guilty for being ill.

Hello, hope everyone is having a good week. My new dosage of amitriptyline is taking some getting used too. I'm at 65mg so far and supposed to be going up to 75mg! But I'm getting nightmares which are waking me up rather than the vivid dreams that I was getting on a lower dose. Does anyone else get that? Also I'm eating everything in sight but I've read that it's a side effect of the medicine!

Ds2 is now booked into nursery 2 days a week and I feel ok with that (well trying to suppress the guilt) but he's had a fever this week and because I still any lift him dh has been up all night with him and then having to go to work all day! He has a 2 hr commute which he normally drives but he's had to get the train or he said he'd be falling asleep!

hi all I just got back from seeing a specialist and finally have confirmation of diagnosis of fibromyalgia. I feel total and utter crap nowi thinks it's from the nerves. haven't felt this bad for a while.
he said about the amitriptyline instead off keeping on upping the dose when you get used to it to take a break from it then when you start again it is effective. just need to sort an alternative for the pain he did mention gabapentin.
I'm just cwtched up I'm bed now dosed up with paracetamol and ibuprofen.

Having a bad day, left work a bit early and now I'm in bed. My legs are so sore. The kids have been unwell with colds, so maybe it's that, but also my period has started. Feel so run down, and I need to be well for my new job. Can't go to the gp until after I have done the health check, otherwise the job offer might be revoked.

So fed up, as for the past few days I have been feeling almost normal, and now this.

Sorry foxy It's horrible, isn't it? I was on Gabapentin for a while... I hope it helps you if you try it.

I've been at work but feel awful. So fatigued. I wish someone would take it seriously & help me with it.

I have been off work for three weeks and was planning on going back tomorrow but feel so bad I had to call in sick again and get another sick note from GP.
on the positive side dh had a job interview and it seemed positive so I won't feel so pressured about returning to work.

That is good. Well done to your DH.

I'm a lone parent so have to find some way to manage. I had loads of time off last year & was determined to not do the same again

Hello... I just got back from my nutrition doctor who said that in the 4 weeks I've been doing this awful diet, my liver & kidney functions have improved. Also, I've lost almost a stone. I have to continue for another 4 weeks and then can go back to eating normally. Hopefully! Not sure I can face another month of eating nothing but at least the end is in sight & there is some evidence that it is helping.

what diet is that?