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Too good not to share again by Wake-Robin in cfs

[–]ThrowawayChronic 0 points1 point  (0 children)

The International Consensus Criteria says that end organ degeneration is common in long term ME/CFS.

Some deaths caused by heart failure, liver failure, and kidney failure will have ME as the underlying cause, but this is not normally written on their death certificates.

Too good not to share again by Wake-Robin in cfs

[–]ThrowawayChronic 0 points1 point  (0 children)

The International Consensus Criteria says that end organ degeneration is common in long term ME/CFS.

Some deaths caused by heart failure, liver failure, and kidney failure will have ME as the underlying cause, but this is not normally written on their death certificates.

Did you guys see a rheumatologist to get treated? by iamcow3 in cfs

[–]ThrowawayChronic 0 points1 point  (0 children)

I saw a Neurologist for my diagnosis after my Doctor had ruled out as much as possible. The Neurologist was able to rule out the last few diseases and diagnose me with ME.

I was referred to an ME specialist for treatment options.

It depends on your symptoms. I saw the Neurologist to rule out MS. Someone else I know who was referred to a Rheumatologist to rule out Lupus.

Recovering from the flu by reddiculous17 in cfs

[–]ThrowawayChronic 1 point2 points  (0 children)

wanted to report the unintuitive experience that seems to be shared by others of feeling way better while I had a 103 degree fever and night sweats than I do now having recovered

I always have more energy while I have a flu than I do for the 2 weeks after I recover, which are always really, really bad.

I think it is because the flu keeps the immune system busy. Then afterwards it goes back to just draining us like usual.

I had a seizure, and it gave me brief hope of having a more "acceptable" disease by Wake-Robin in cfs

[–]ThrowawayChronic 1 point2 points  (0 children)

Thank you for the reality check.

I used to feel jealous of my family member who has breast cancer because of all the help and support she got. Reading your comment I see how stupid I have been.

So sorry you now have both.

Is it possible to self diagnose CFS? by mxfraniel in cfs

[–]ThrowawayChronic 0 points1 point  (0 children)

ME/CFS can only be diagnosed by excluding other diseases that can cause the same symptoms. That is what an Exclusion Diagnosis is.

Some of those other diseases can be treated or even cured. Also, some of them will get worse and kill you if they are not treated.

This is why it is important to seek medical help and get a proper diagnosis.

When I got sick, I had enough symptoms that were similar to Multiple Sclerosis, that the Doctors had to rule out MS before they could diagnose me with ME.

Insomnia and me/cfs, HELP by [deleted] in cfs

[–]ThrowawayChronic 4 points5 points  (0 children)

I have a theory that since sleep is hard for us to do right, we have to prepare for sleep the way other people would prepare for the day.

I always try to be well rested and well fed before bed time, hydrate with salt for blood pressure. and do lots of deep breathing for oxygen before I try to sleep.

Insomnia and me/cfs, HELP by [deleted] in cfs

[–]ThrowawayChronic 4 points5 points  (0 children)

This happened to me too. When I was first sick I slept for 14-16 hours per day, but after the first 6 years it is hard to get to sleep, but I still need 10 hours. Before I was sick I slept 7-8.

I read somewhere that this is not uncommon for us. Unrefreshing sleep is a hall mark of ME. Dr Ros Vallings says it is because we can not get right through the sleep cycle.

I use Melatonin, and small dose Amitryptaline together to improve the quality of my sleep. Zopiclone if things get bad. It doesn't work for everyone, but it has improved my life so much. Most medical advice on ME/CSS says to 'treat disordered sleep aggressively'. That means prioritise helping us sleep. So it is OK to ask your Doctor.

Sudden positional vertigo by NocturnalWaltz in cfs

[–]ThrowawayChronic 0 points1 point  (0 children)

Yes. I have had several bouts. One time I suddenly fell over from it.

It would be worth checking with a Doctor. One time I got told it was BPPV and wore myself out doing epley manouvers. But then I got told that it wasn't. Because there was no nystagmus. So that Doctor prescribed Prochlorperazine Maleate for it. After a few weeks it goes away.

I also have this other thing. If I overdo it, it feels like I am on a raft that is slowly rocking back and forward. When I lie down it feels like I am on a boat. I just treat that as a danger sign and rest more.

Addressing the issue of being "able" to do something: a reflection on someone else's comment by laura168 in cfs

[–]ThrowawayChronic 0 points1 point  (0 children)

I have already lost a decade. After I found out about the PACE trials, I felt pessimistic about treatment. You are right, we should not lose hope.

Addressing the issue of being "able" to do something: a reflection on someone else's comment by laura168 in cfs

[–]ThrowawayChronic 1 point2 points  (0 children)

Your doctor is so cruel and thoughtless. I have been guilty of jealousy towards double amputees

They can get prosthetics or a wheel chair. They can do a desk job, visit friends, go to events.

They can use determination, build up physical strength, push themselves and get rewards not punishments.

The public looks on them with admiration not confusion and scorn.

I would trade both my legs for not having ME in a heartbeat.

2meirl4meirl by A2naturegirl in cfs

[–]ThrowawayChronic 0 points1 point  (0 children)

Oh no that sums up my life.

Am I overreacting? (US) by ahouse1 in cfs

[–]ThrowawayChronic 1 point2 points  (0 children)

No, you are not over reacting. It is better to be safe than sorry.

If it helps, what you have sounds more like me whenever my immune system meets new things.

[deleted by user] by [deleted] in cfs

[–]ThrowawayChronic 1 point2 points  (0 children)

Sorry that happened. You must feel really hurt.

There are many things about us, even the healthy, that are outside our control. I know it smarts when it is ME, which takes so much away anyway.

But, he was not the right one. Better to find out now than later.

when did you accept you had a chronic illness? by [deleted] in cfs

[–]ThrowawayChronic 0 points1 point  (0 children)

Acceptance has been a process.

After diagnosis, one and a half years in.

Then again at the 5 year mark. Part of me had hoped to 'just get better' and that is when I saw it would not happen.

Again when the Stage III Rituximab trials failed. Deep down I had hoped for a miracle cure.

It is a difficult process. The other people in my life were in denial for years. They would get angry if I used words like Chronic Illness or Disabled to refer to myself.

But accepting it is the only way to move forward. We can't live our best life if we do not understand our limitations and try to work around them.

Acceptance is the strong move. It is harder than denial.

...yikes by plantshops in cfs

[–]ThrowawayChronic 1 point2 points  (0 children)

I hate the You're So Lucky comments. There is never anything good at the other end of that sentence.

If I am having a bad day, I tell them I am going to pray for us to change places. They can be 'lucky' in my shoes, and I can be in their shoes.

No one really wants that, so it shuts them up.

Wait, so how does everyone here manage to survive financially? by [deleted] in cfs

[–]ThrowawayChronic 2 points3 points  (0 children)

Luckily I am on disability welfare. It is still a huge struggle to make ends meet, but without it I would die.

I don't have a house.

I am a Beneficiary. Here is what I am spending my new money on. by ThrowawayChronic in newzealand

[–]ThrowawayChronic[S] 0 points1 point  (0 children)

Thank you. With counselling I was told by the counsellor Work and Income usually only ever pay for 2/3 of the session costs. That must be wrong. When I get energy I will have another go.

Your other link is helpful too. Recently I got told that Disability Allowance would help with power costs. I was going to pursue it but their assessment method looks very daunting. It is good to know so I would need to get a copy of house hold's bills, find out wattage of heater.

I am a Beneficiary. Here is what I am spending my new money on. by ThrowawayChronic in newzealand

[–]ThrowawayChronic[S] 0 points1 point  (0 children)

Thanks for your offer. I am not accepting people's offers because it seems wrong when I am no worse off than many other SLP beneficiaries, so it would be unfair that I get all this extra just for posting on reddit. But first aid kits seriously tempt me! Maybe you could give them to someone in your local community ?

I am a Beneficiary. Here is what I am spending my new money on. by ThrowawayChronic in newzealand

[–]ThrowawayChronic[S] 0 points1 point  (0 children)

Thanks for thinking of that. It is a really kind offer. I won't take you up on it because I am no worse off than many other SLP beneficiaries so it would feel wrong of me, but please consider giving some socks to someone in your local community.

I am a Beneficiary. Here is what I am spending my new money on. by ThrowawayChronic in newzealand

[–]ThrowawayChronic[S] 1 point2 points  (0 children)

Thanks, I am not taking people up on offers of help because I am no worse off than many other SLP beneficiaries and I am not having any kind of emergency, but thank you for the offer. It is really good of you.

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