Help!! I need serious help :'(

[Ambrosia_angel]

What has help your symptoms? I feel suicidal and need help I don't want to kill myself but I feel like that's the only way I can relieve my symptoms.
I'm 16 and have cfs for one yr.
Thank you for reading.

 

[Valentijn]

What has help your symptoms? I feel suicidal and need help I don't want to kill myself but I feel like that's the only way I can relieve my symptoms.

Fear not, there's plenty of things which can help with symptoms to varying extents

One thing that would help us is if you can describe your symptoms in detail. But here's things I've found helpful for various problems.
Constant Headache: 2-3 grams of high EPA/DHA fish oil per day, spread out over the day. Takes about 1 day to start working, and headache comes back if I stop taking it for a day.
Muscle Aches: Pacing. This means respecting your limits. If something makes your muscles hurt, don't do it!
Deep Aches: high dose hydroxoB12. I do 20-40mg per day, and it takes the edge off the pain.
Muscle Twitches/Cramps: Magnesium, twice per day. Not magnesium oxide though.
Brain Feeling Wired: N-acetylcysteine, 2 or 3 times per day, one of those before bed.

These are all available without a prescription, either in supplement shops or online.

 

[peggy-sue]

I use Magnesium citrate - you need to supplement with Calcium as well, if you're taking magnesium - to protect your bones - and you need vitamin D with your calcium.

I take only EPA. I (personally) get bad effects from DHA.

I use a sublingual Vitamin B12 - it helps my brain work better.

 

[Crux]

Hi Ambrosia_angel;

Please don't go, stay here with us, and others who care!

I had suicidality much of my life, and found that it was because of a B12 deficiency . B12 deficiency can cause us to think in ways that do not follow the logic of survival.

Minerals, such as potassium and magnesium can be calming, and will also help with pain.

Please contact someone nearby, and ask for help now.

Stay in contact with us here, and describe all of your symptoms, so that we may try to guide you.

 

[Ambrosia_angel]

Thank you for the advice. Do u know the best cheapest online shops or brands? My mum quit work and is caring for me and we have been refused benefits money help so we don't have much.

I have back pain and Occipital Neuralgia (no know trauma that caused it). And literally bedbound. I only go out for hospital appointments. I just want help with the tiredness mainly. I have no life and my mum says I need to go to college for gcses and I still can't even walk that well yet. I just want to be normal

 

[Purple]

Hi Ambrosia_angel

If you can tell us what country you are in, we may be able to point you in the direction of some organisations which may help you with claiming benefits you need.

 

[LisaGoddard]

Hi Ambrosia_angel,
I know what it is like to be so low - I sympathise. I had a few years of severe ME. It can get better - just hang in there. I came back an hour ago from having tea and cake with friends in a cafe which would have been completely impossible a year ago. Like the others, I have found things that help - B12, magnesium citrate and ribose.

I see that you are also in England so I can send you the link for the cheapest sources of these if you want.

Love and prayers,
Lisa

 

[helen1]

Hi Ambrosia,
So sorry about your woes. Welcome and glad you found us!
B12 (sublingual methyl form) has helped my son a lot with mood issues. Magnesium malate helps me with sleep especially when legs are twitchy.
It IS possible to improve; I've improved since a year ago. I also know of 22 people who have recovered either completely or almost so. I'm keeping track as I'm like you and need to feel some hope. It seems if you've had this less than 5 years, you've a much better chance of recovery.

 

[Valentijn]

Thank you for the advice. Do u know the best cheapest online shops or brands? My mum quit work and is caring for me and we have been refused benefits money help so we don't have much.

Someone else might have suggestions on local online shops, but something else you might need to look into is appealing the denial of benefits. It sounds like this can often be effective.

I just want help with the tiredness mainly. I have no life and my mum says I need to go to college for gcses and I still can't even walk that well yet. I just want to be normal

There's no quick fix for the "fatigue" or Post-Exertional Malaise (PEM). But for teens, ME/CFS often goes away or improves a lot within a year or two. Until that happens, one of the best things you can do is rest so that things don't get worse.

 

[Crux]

Thank you for the advice. Do u know the best cheapest online shops or brands? My mum quit work and is caring for me and we have been refused benefits money help so we don't have much.

I have back pain and Occipital Neuralgia (no know trauma that caused it). And literally bedbound. I only go out for hospital appointments. I just want help with the tiredness mainly. I have no life and my mum says I need to go to college for gcses and I still can't even walk that well yet. I just want to be normal

Hi Ambrosia_angel;

I believe some of your symptoms could be low B12 related. Trouble walking,back pain, tiredness, and occipital neuralgia may be included. I've had this type of headache repeatedly.

With B12 def., there can be alot of inflammation of the spine, from the head and neck, down the whole of the back.

In my case, ( this happens with some people, but not everyone,) when B12 gets low, folate gets trapped in the blood serum, and can cause inflammation because it cannot be used properly by the body. This has caused alot of pain, including occipital neuralgia.

If there is a way to get your blood levels of B12 and Folate measured, it may be a clue. ( sometimes it's inconclusive.)

Otherwise, a trial of B12 could be done. I suggest that starting B12 first and alone for a time will use the excess folate, and stop those headaches. Of course, eventually the other B's will be needed.

Another,(rare), possibility causing the headaches, ( occipital ), maybe, is low copper. This can happen if estrogen is low, or if someone is taking alot of zinc without copper. Although there is a remote chance of this, I thought I should bring it up, because many of us fall into the rare category. Nuts, seeds,dark chocolate

, shellfish, etc., have alot of copper. ( this also happened to me)

Maybe other folks in the UK can suggest better places to order B12, but, here's a link to iherb.com, and a type of B12 that is good. (I take this type, methylcobalamin, and another type, hydroxocobalamin.) Some people find that one, the other, or both, work better for them.

http://www.iherb.com/Enzymatic-Therapy-B12-Infusion-Energy-30-Chewable-Tablets/2119

 

[Sushi]

Hi Ambrosia_angel

I'm glad you asked for help here. You are not alone and there will be many good suggestions and lots of support from members.

The duplicate thread that you wanted deleted, has been deleted.

Very best wishes,
Sushi

 

[caledonia]

Hi and welcome. It's tough being so young and so sick (and no money!). I think you've gotten a lot of good advice and don't really have anything to add at this time, except to introduce you to the concept of Start Low and Go Slow.

This will help head off possible adverse events from going too fast with the supplements. We can be very sensitive to things so here is how you do it. Start one new supplement at a time and give it several days to see how you react. You may have to start with a tiny dose, not a whole pill. 1/8 of a pill is a good starting point. If you get a negative reaction, stop the supplement and let all the symptoms clear out. Then restart at a much lower dose which you can hopefully tolerate. If not, repeat the same method.

Start a symptom journal where you can take notes on what supplement you're trying, how much and what effects good, bad or indifferent.

I'm rooting for you, hang in there!

 

[peggy-sue]

In the uk you can get the Solgar brand of sublingual Vit B12. It's just under £10 - for enough for three months. It's easily found in local-style Health food shops (not the big franchises like H&B).

You put it under your tongue and let it dissolve slowly. Taking it this way means you absorb it directly into your bloodstrean, through the big blood vessels under your tongue - so the vitamin doesn't get lost during metabolic and absorption processes in your tum.
It is really important to take the sublingual one!

For help for your mum with claiming benefits for you, it is well worth joining this group. You should at least get DLA (or is it PIP now?). If she has had to give up work to care for you, she should be entitlend to carer's allowance. It's only a pittance, but when you're in this situation, every penny counts.

http://www.benefitsandwork.co.uk/

The really, really good news is that you haven't had this for long, and that you are very young. If you take incredibly good care of yourself now (or your mum does!) you have a really, really good chance of making a good recovery.

It will mess your life up just now, (a lousy time, to have your life messed up, I know), but you can catch up with your education later. Being a mature student is great fun - you get a lot more out of your studies when you're a bit older.

 

[Ambrosia_angel]

They won't ever give us any money. I don't want to try appealing anymore : | it's too stressful for my mum.

I have had lots of blood tests. I don't know which but definitely B12 and folic acid. My doctor says nothing was abnormal except my Mycoplasma anti bodies which was due to the chest infect which triggered my illness.

I don't think my doctor can give me B injections coz we are on the nhs and my levels aren't low. I know injections are most effective. I tried the enada nahd but it hasn't helped. It cost £33.

 

[Purple]

They won't ever give us any money. I don't want to try appealing anymore : | it's too stressful for my mum.

There are organisations who can help you with appealing and it is important to appeal (with appropriate help and support) for the long term - and to give you more finances in shorter term too. If you wish to know more about this, please send me a private message (by clicking on my name and choosing 'Start a Conversation').

 

[peggy-sue]

I'm terrified of needles and wouldn't have injections. The sublingual Vitamin B12 isn't expensive considering how much good it can do, and you just buy it from a health food shop.
My doctor won't help me, I have to help myself.

I used an expensive NADH too, but it didn't do me any good at all either.

 

[Valentijn]

I have had lots of blood tests. I don't know which but definitely B12 and folic acid. My doctor says nothing was abnormal except my Mycoplasma anti bodies which was due to the chest infect which triggered my illness.

Sometimes doctors lie, or withhold information. It might be worth it to get copies of your medical records.

Chronic infections are common in ME, so the mycoplasma might be sticking around - that should probably be looked into too, if only to rule it out as an ongoing problem.

 

[Ambrosia_angel]

That's what I wanted to do. To see what they tested me for but we never got round to it.
Like while I was in the hospital a second time since the cfs. The doctor did blood tests and he only told me months later that my vitamin D was low :/ it wasn't ever just under the normal range. It was 60 and I think it's supposed to be 80 or 90.

How would I deal with chronic infections. I've been waking up with serious mucous in my throat for about 4 months so I wouldn't be surprised if that was the case.
Would a basic all round microbiology test be able to see chronic infections. My doctor sent that off and a fbc.

 

[Esther12]

Sorry to hear of your difficulties. Best of luck with it all.

It sounds really difficult with the DWP being arses. I agree with others about appealing - they often turn down CFS cases as standard, as a way of getting rid of those who can be easily put off. There are organisations who can offer you advice on this (although the government has also massively cut funding for this too!). The ME association has an advice line to, for ME specific benefits advice.

re treatments: Vitamin D supplementation sounds sensible as you were found to be low, and will not be getting much sun-light. I'm not sure that there's much good evidence to support any particular intervention I'm afraid. Have you been properly assessed for alternative diagnoses? If nothing else is found, I would advise that you try to just play about and do what feels best for you. The prognosis for those who fall ill young is generally thought to be better, especially as you've not been ill for long. Any improvement could be slow and gradual though, so it could be worth being prepared for a long period of ill health even if you were to recover.

I really wish that I had more helpful advice for you, but I'm afraid that we're really lacking good evidence at the moment. Best wishes for it all.

 

[anna8]

Hi angel, just thought I'd check up on you! Hope you are feeling a tiny bit better! Please ask for help as much as you can!
Lots of love
Anna x