Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

oooooooooohhhhhh sulfolk what you blogging about? as for tv....ive put dd in bed with me recently to watch movies on a sunday afternoon..........she is 11... and snored very very loud! hehehe

Hello - I have read the thread but have forgotten what I wanted to say

Fuzz, so sorry about homestart but good news, ish, about the blood tests.

The one benefit of my being ill is that DS gets to have pyjama days. Usually, we have little time at home doing nothing but I've realised that he really benefits from time at home & it's good for us. We can be in our pyjamas at lunchtime but have fun playing monopoly or watching films together. It's noce to chill out without feeling too guilty.

I'm off to look for suffolk's blog.

Hi all! sorry I haven't been about.
Hello all new people :)

Well, I am struggling big time atm. My ME is horrible and I've gone back to bed for a couple of house for two mornings this week and I shouldn't be as I am working at sorting my house out (another clutterbug here Suffolk and I've let my house go too ~ big time) and am running out of time before my return to work ~ which I am dreading! especially as I chatted with a colleague yesterday who told me that it is so bad at work now, that if I could find another job, I should take it! and I really wish I could! the training is going to kill me and the actual work thing is going to do me in too. Apparently, there is no moral at work whatsoever!
I've just got Ds to agree to doing the caring thing for Dd when I go back. So it'll mean that he'll get her up and ready for school, take her there and then pick her up from school, although there will be a slight timing problem there, so I am going to try to get someone to collect her from school and Ds will pick her up soon after...I will pay him for it, but it has to be cheaper than a cm. The only thing is that it's a massive responsibility for a 14 year old, especially as there will be times that I don't get home before 11pm.
My poor kids

Blogging sounds great. I've tried it a couple of times but I am useless at it! My house is a nightmare too. Did get some decluttering done last year but still an awfully long way to go. I feel mentally a lot more ready - the hoarder-tendency switch in my head has finally flipped (basically because I realised how much my symptoms are worsened by having a messy inefficient house) but I don't have the energy to carry it out. If I do use up too much energy on it then I won't be able to work. DH just said if he gets a FT job then I have to let him deep clean the house before he starts - this would be great but he has to consider his health too, if he injures himself again we are completely screwed!

Your return to work sounds scary solo :( but don't worry about your DCs - loads of teens round here take on similar responsibilities.

I'm back tomorrow and really worried about getting up. On Saturdays I don't need to leave til 7.50, so that's just about doable, but in the week it's 7.30 which means I have to get up at about 6.30 especially as I have to dress smarter (Saturdays are casual) and navigate around DH getting the DCs ready for school etc. DH has been wonderful at giving me lie ins - I only get up at 8.10 to watch DS while he takes DD to school, and 10ish on weekends. But it's so hard for him to wake me at 8, I feel so groggy. I was hoping to increase my amitriptyline again to 50mg, but I think it might push me over the edge into unwakeable!

Hi all, just wanted to say hello, as I think I may be a cfs. Apologies for copying and pasting from the 'aibu' thread but wanted to canvas opinion on what I'm going through. I'm Jo by the way...

Probably should be in the health section I know but might pop along there in a mo. Brief history, I had some kind of 'crash' or chronic post viral thing while I was working 6 years ago, and ever since I've had some relapses when I get tired/run down. I haven't ever got a solid diagnosis of this from the doctors, even though I've moved a couple of times and been to different surgeries. I have also had three children in the interim (which I know is tiring) I'm now a sahm.

Since moving in the past year I have been ill on and off for months with various virus etc, but I have also been getting chest pains which have scared me. While I know this could be something to do with a virus, I wanted the docs to run some tests for heart problems and any other related things like thyroid/anaemia, and an ecg and chest xray, which was fine. They all came back clear.

Then over Christmas I was really poorly and the chest pains very bad so I went back and they still said they could find nothing wrong with me. That was almost three weeks ago and I still feel very tired as if I still have flu so went back to the docs yesterday and he was getting a bit shitty, listing all the things they have done to rule out anything serious, then he said are you depressed! He now wants me to do a test for depression and anxiety. I am in no way depressed (well only that I can't find out what's wrong, but anyone who know me would say I'm not, and I don't feel depressed)

I actually feel really angry with the doctor and feel like he doesn't believe I have genuine chest pain. Do you feel this is unreasonable? P.S I did have depressed as a teenager, which is his premiss for insinuating I have depression, but for that very reason that is why I know I am not depressed now iykwim.

Lottie, the anxiety and depression score will show you are severly depressed, (even thou you arent) just by the nature of the question. things like in the last 2 weeks have you loked forward to things...the answer will probably be no but not because you are depressed but probably because you are s tired or have so much pain, you cant look forward to anything...

Is there another GP in the surgery you can go to? if not take the NICE guideliens to the GP and say this is how you feel can he refer you to the ME/CFS clinic. some anti depressents help with pain releief, i take duloxetine, and i have to be fair and say when i dont take it my pain is worse. Im so sorry no one is listening, most of us have been through the same. it took me 10 years to get a diagnosis, after lots of misdiagnosis!

Fuzz...could you take ami a little earlier i take mine at 6pm..

I already take it at 5pm Belle :(

Hello Lottie, sorry you are not being listened to. I think I was really lucky with the doctor I originally saw - he was very trusting and believed that as I had plenty of experience with depression, I knew the difference. I hope you can see a different doctor within the same practice.

It does sound very like CFS especially as you've had so much ruled out. Have your blood tests included autoimmune system? The abbreviations are ANA and ANCA - they test for illnesses like lupus.

By the way do any of you lovely ladies use a footstool? Quite tempted...

Lottiegal...that is pretty much what happened to me. I was eventually referred to a psychiatrist which turned out to be a blessing. He asked lots about my symptoms & history & referred me to rheumatology which, after 2 years of problems, really got the ball moving with further tests, X-rays, ECGs etc. a year on, I still don't have a firm diagnosis but am now close, having had a myriad of other conditions ruled out.

It is very frustrating, I know, but please persist with your GP.

Fuzz, I recently had my ami increased from 50-75mg & found the change really hard. I was groggy & yucky the next day. But, after a couple of weeks, it has settled down & I feel ok. It's a but of a nightmare with work, but if you can bare it, it knight help?

Solo, lovely to see you here again. So sorry about the DC. It's a nightmare, isn't it? DP doesn't live with us so DS has to help me out a lit more than a 7 yr old should. He now has support from Young Carers. Would that be any good for your DS? They've been brilliant with mine.

Also, does anyone else get:

• sore bits on their scalp? I get bumpy bits on top which hurt and then I pick them and they don't go away.

• sore bumps at the baseof their skull, so it feels like someone had hit you over the back of the head with a shovel?

• dry, swollen eyelids?

I realize I sound utterly hideous and that's not far from the truth

My insomnia is bad, can you tell?

I get the odd bump but I figured they are just spots.

What does confuse me is that every now and then I get a tingly bit on my scalp, like pins and needles but concentrated in one really small area. Always in the same place too

On the bus to work at the moment. Feel so crap and struggling to stay awake!

Yes to the bumbs on head, although like fuzz just assumed it was spots.

I get a sharp pain at the base of my skull to, its like having a hot spike stuck in there then it goes away.

My eyes are always dry and irritated especially near the end of the day and I have sore ears its not earache they aare just sore

Does anyone have sore feet? This is fairly new but they hurt all the time, even when I haven't been standing on them.

3 days in work= manageable
4 days in work= saturday in bed and lead suit is back:(

Aww belle :( sorry to hear that. It's hard finding the balance isn't it. Even if I did manage FT (and I'm starting to accept that I almost certainly won't) I would hav absolutely no life other than work.

I found myself wondering today, given the way in which CFS makes us suffer for exertion, if there was a mathematical formula to describe the relationship between time spent 'overworking' and 'increase in illness time overall' ie does working one day mean I will then be ill for an extra week?

Anyway. Survived my first day back, it was quite nice although my paranoia ruined much of the morning as I get so scared that I don't fit in anymore (and therefore start wondering if they ever actually liked me in the first place!). Developed a horrendous headache at lunchtime which just won't shift haven't had one this bad for ages, and it's similar to the recurrent ones I had early last year (before I had my first major CFS lapse) which resulted in neurology referral, except this is on both sides not one. Really hoping dinner and sleep will fix it!

My feet are about the only thing that don't hurt. Thank you for all the responses to my questions.

Belle, I think that's the same for me. 3 days is manageable, 4 pushes me over the edge. I think come September I might try to change to 3 days a week & just deal with the financial impact.

I love the idea of a mathematical formula, Fuzz. I'm glad to hear you survived the first day. I hope dinner & sleep sort your head out.

Im another that finds 3 days manageable but 4 days wipes me out, right now I cant imagine ever going back to the hours I used to do.

Financially 3 days is really tough to manage on but its better than ssp which we had to survive on when I pushed myself to hard and ended up off sick.

Ive had a tough week but want to thank you all for not judging me when I needed to moan and rant earlier in the week, ive had a nice relaxed day and am feeling a bit better.

i go to 5 days in feb!!!!!!!!!!!!!!

Oh no belle :(

5 days is killing me. Yesterday was ok except the headache, but I'm really suffering today (for ONE day FFS) I feel like my muscles are on fire. I managed to hang out one basket of washing on the airer and had to stop. It's like burning inside when I overdo it, I don't know how else to describe it!

I went really wobbly earlier, my hands were shaking and I got a weird ache in my arms. I've had that every now and again for years though. It happens when I forget to eat but it wasn't even lunchtime and I'd had breakfast! When I get it I just need to eat something quickly.

And smiling don't worry about thanking us we all support each other :) x

yeah fuzz my hands are burning too and i have my lead suit on again!!! thats how iknow ive done too much, although im not sure what ive done that was too much!!! :(

Smiling thats why we are all here cos in the real world others dont quite get it!

Eeek, 5 days, Belle. I have to do 4 1/2 some days this term & that will be hard. 5 days is very definitely too much. Even the 4 days I do is a struggle as I have no life other than work & ferrying DS about.

Fuzz, you don't sound well at all I get the burning muscles but not the arm thing you described.

I have my lead suit on & am fresh out of spoons Praying for a snow day but tis highly unlikely down here... the palm tree in the garden always looks funny in the snow.

I feel very lazy in comparison to all of you. I only work one (short) day a week (plus caring for SN child) but occasionally do a second. I am just getting to the point where a second day at work will not cause a full on crash but still struggle to talk/think/walk on the second day. It has been a very slow increase from only managing a couple of hours (nearly 3 years back) to today. I know I am lucky to be able to work so little- for me accepting that I could not return to my previous hours was hard (read guilt) but I think needed to stabilising my health.
I get heavy aching arms like I've been weightlifting but for no reason - but it sounds different to you Fuzzpig. I do however have symptons which in the past meant I needed to eat so (misinterpreting) I eat and have got podgy in the last year.

I am hoping to be assessed (to see if well enough) for exersize therapy this week. I can walk much better than last time and even got up 2 flights of stairs (without a long rest part way up) so I am so hopeful. It is now more that a year since my initial CFS clinic assessment - and I have made a lot of progress in stabilising my pattern of keeling over from total exhaustion. In fact I don't think I have fainted/lost consciousness for a whole year now! Progress! Had a 24 hour tape done last week (for cardiology) and felt on top of the world (for me) that day so I am sure it will show absolutly nothing ( apart from mild tachicardia). The 24 hour tape (well its about 20 hours really) misses the early morning which is when I am most likely to get the almost faints and 'drunk' legs. The day after the tape was a different story and I was back to the lead suit Belles described and struggling to get upstairs. I think it was a minicrash from the 2 (local)hospital trips so perhaps I should have done something the day before rather than save my energy (as we all have to) to manage the hospital trip the next day.

Sorry every one is so unwell at present. Wishing you all improvements and extra rations of spoons all round.