Please help, I'm worse every day and don't know what to do.

[EMilo]

Hi everyone,

I could really use some advice. I have been sick for 26 months, housebound for 16 months. I get worse every month and, even though I feel like I'm doing less and less, I still keep feeling worse and worse. I am now in bed about 16-20 hours a day, I spend the rest of the time sitting on the couch. I walk 300-600 steps a day. I haven't been outside in months.

I am absolutely panicked and desperate to keep what little functioning I have to stop more muscle and bone loss, to keep my circulation and lymph going, to keep embolisms and worsening dysautonomia symptoms at bay...

My worst symptoms are a horrific headache that never goes away, sleep dysfunction, muscle aches and stiffness, spine and neck pain, blurry vision, terrible ringing in my ears, brain mush, sore throat ,weak voice. I can't tell what helps and what doesn't help anymore because I always feel terrible.

I wonder if I should just stay in bed for months and have my husband do even MORE for me? If I should stop all reading or watching tv? I also wonder if I should try stretching more or a bit more walking (I'm talking a few hundred more steps a day, not a walk out side or anything) to help this pain and my sleep? I don't know if I should stop all supplements or try more drugs?

I'm so scared and don't know which direction to turn and can't research and process info without getting very overwhelmed. My head hurts so badly, I break out in sweats.

Any advice would be appreciated. I feel like it is only a matter of time before I can't sit up or speak or eat anymore and I am terrified. Thank you!!

 

[brenda]

EMilo

Welcome and sorry to hear you are on a downward spiral. I am sure that you will get some helpful suggestions from others who were like you but managed to pull themselves round. I was pretty bad and bedbound but improved (apparently but not actually) because that is the typical progress of Lyme Disease. Do you mind sharing what tests have been done and what supplements you have tried (and dietary changes)?

 

[S.A.]

Hi, EMilo,

I'm sorry tohear things are getting worse. How have your sleep muscle cramp issues been? Also, do you have someone at home helping you research or organize? Last year, I was so foggy headed there were big instructions I overlooked in the notes from my doc. I also found some of the intructions on tests like the adrenal fatigue test and NutrEval confusing and overwhelming. It took a long, long time to get the wherewithal to get better. It was very hard at first to make decisions between what I was reading and what my new doc thought. He did a great job figuring out that my son and I were b12 deficient, but he also had us on glutithione and 3 precursors to glutithione. It took a lot of courage to pull the plug on glutithione and go against my doc, but we immediately felt better. I'm not saying that you need to go off glutithione. I don't even know if you're taking it. I'm just saying I know how hard it canbe to pinpoint details like this when you're hurting so bad and confused from fatigue and pain. Just keep sorting through. Don't be afraid to take chances, but make them with as much info and organization as you can muster.
Best of luck!

 

[Esther12]

Personally, I'm really wary of attempting to give advice without knowing exactly what's wrong, as everyone's different.

Generally though, I think that it's best to just relax and do what you feel like in the moment, rather than pushing yourself to do more/less than you feel you want to. (It's hard to be clear here, as it's easy to think 'do what you feel like' = 'do the fun stuff I want to do even though I feel ill' or something like that. So the 'relax' advice is to let go of an intellectualised view as to what you want, and to instead relax your body, and let yourself do what you feel like doing in that moment... this has now basically become me giving medical advice without knowing exactly what's wrong... beware me!)

I don't think that artificially restricting your activities more than you feel you'd like is likely to be worth the trouble, and could just lead to you having a worse time.

Sorry to hear you're struggling. Best of luck.

 

[minkeygirl]

Do you have a doctor? I found mine through Google. I typed in my city and then every derivation I could find. Integrative ME, naturopathic ME, Whatever you can find. I found one who is 2 miles away.

It's hard to do this without medical support.

 

[leela]

EMilo, what a lovely post on your blog. It is so clear that your natural shine is your strength right now.
Like Esther said, relaxing body and mind completely, with everything exactly as it is, can allow
the innate knowing, the deep wisdom conduct.
Hugs.

 

[beaker]

Do you have a doctor that you can work with and/or that is helping you ? Do you live near a ME/CFS specialist or are you willing to travel to see one ? Can you afford to see one? You are still in the early years of illness, so this is the best time to be aggressive. If I were you, I would try to see a specialist. Yes, you will probably be put on a long wait list. But better to get on now , then wish you had a year from now.
Sorry you are going downhill. That sucks.
It's hard not to worry about tomorrow. But if you try to just deal with each day, that might make it more bearable coping wise.

 

[barbc56]

You're getting good advice.

I know someone who is bedbound and if she could, would do exercises with her arms such as raising them and writing the alphabet in the air. I have said this before but even people in comas get some kind of PT, even if it is passive therapy and will sometimes come to your home.

 

[WillowJ]

sorry you are doing so poorly. just sending a hug and warm thoughts.

 

[Daffodil]

EMilo...i would gather every penny i have and head down to Reno or Belgium and see Dr. Kenny DeMeirleir.

 

[tyson oberle]

EMilo...i would gather every penny i have and head down to Reno or Belgium and see Dr. Kenny DeMeirleir.

We can see Dr Kenny DeMeirleir in Reno, Nevada as a patient? If so, Daffodil, are you seeing KDM in Reno?

 

[Sushi]

We can see Dr Kenny DeMeirleir in Reno, Nevada as a patient? If so, Daffodil, are you seeing KDM in Reno?

I am seeing Dr. Kenny De Meirleir in Reno at the end of January. He comes there for a week approximately every 3 months.

Sushi

 

[Beyond]

How is you tongue and skin? Do you have swollen/cracked/coated tongue or a skin with reddish/flaky patches? Do you have dandruff? These would be indicatives of candida and leaky gut. Not as helpful as going to KDM but at least it could give you a hint in the meantime.

 

[Thinktank]

Have you ever tested for borrelia or other tick-borne co-infections?

 

[EMilo]

Thank you for all your replies. I appreciate them more than you you. I will answer as soon as I can. x

 

[Thomas]

@EMilo I read your blog. I also got sick a week after the flu shot in November of 2011 - must have been the same strain of vaccine that hit us. I've had a similar progressive course as you although perhaps not quite as severe but I am declining as well. Per haps there is a connection. Oh I can't stop wondering what I might have been able to avoid had I not gotten that vaccine.

 

[Aerose91]

@EMilo-

I feel for you so much. I have been sick for 1 year and like you, i have been steadilly declining that whole time. I am now bedbound 23-24 hours a day and can not as much as sit up.
However like others said make sure you check absolutely everything and if you dont have a doctor find one or many. I have had 5 doctors on this journey so far and i scowered the whole country until i found 1 i liked.
I have all the symptoms that you mentioned and about 30 more, but theres still more tests for me to do so i am getting everything done as quickly as possible. There are numerous stories of people who were in horrid shape and upon finding a treatable cause of their illness went on to make complete recoveries. I know this thread is a little old so i hope you have made some progress and are starting treatments.
You're never out of the fight.

 

[Andrew]

I'm sorry to hear about this. I've been through a downward spiral and it gets very scary. Luckily for me it took nothing more than an antibiotic and a doctor who believed I was really sick.

I'm wondering, have you seen a neurologist and infectious specialist?

 

[Aerose91]

I'm sorry to hear about this. I've been through a downward spiral and it gets very scary. Luckily for me it took nothing more than an antibiotic and a doctor who believed I was really sick.

I'm wondering, have you seen a neurologist and infectious specialist?

Andrew-

How are you doing these days?

 

[*GG*]

@EMilo-

I feel for you so much. I have been sick for 1 year and like you, i have been steadilly declining that whole time. I am now bedbound 23-24 hours a day and can not as much as sit up.
However like others said make sure you check absolutely everything and if you dont have a doctor find one or many. I have had 5 doctors on this journey so far and i scowered the whole country until i found 1 i liked.
I have all the symptoms that you mentioned and about 30 more, but theres still more tests for me to do so i am getting everything done as quickly as possible. There are numerous stories of people who were in horrid shape and upon finding a treatable cause of their illness went on to make complete recoveries. I know this thread is a little old so i hope you have made some progress and are starting treatments.
You're never out of the fight.

Are you in the USA?