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Bedbound - constant struggle - brain on fire

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
I agree, I say simple sentences like, I am overstimulated. The other thing I say is please leave the room, at first my family was hurt. Over time they can see what happens if I don't make clear boundaries. I get sicker and sicker! I can listen to my daughter the most, her voice seems to be in a key that doesn't grate on my nerves. She is big into musical theatre, I cannot go to many of the shows anymore, I ask her friends to record them on their ipad so I can see her. This is an awful illness!

I do take low doses of benzodiazepines, one I can take in the day. One at night. I am one who is all about eaking out all the quality of life that I can now is all I have. It is not a glamorous choice, or a popular one.. but give me the drugs! I have to live now. I will deal with drug dependency if it comes to that. Lyrica helps me. Low doses of opioids help me, and I do not apologize for that. It is a pain medication we humans have been using for millenium. A simple poppy plant.

Dependency and addiction are two different things.

I hope you can find a way to cope. Please don't judge yourself too harshly right now!
 
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Plum

Senior Member
Messages
512
Location
UK
Thank you @Plum for your description. I've asked my wife (many times) for years to please not interrupt me when I'm in the kitchen, but I just can't seem to get through to her how important it is to me. That if I get interrupted, it almost always takes me a long time to recover from that interruption. So I"m curious, does your partner understand your request(s), and and does he readily recognize your need to have the space you need to do "complicated" things while in the kitchen? -- Thanks!
Oh goodness! This takes time. I've had to have arguments to get me to where we are now (yes, this takes energy I don't have but so does continuing with things in a negative way for myself). I will sometimes ask to be left alone and then he'll pop in with some dirty dishes. So I will explain to him what it does to me, and he feels guilty that he came in BUT then starts to get it. I have a chair in the kitchen, right where I stand to prepare food. So if he bothers me I will sit down. If he doesn't notice I'll ask him - why do you think I'm sitting down? Or if really bad, text him - I have my phone on me always.
I believe it's important to explain again and again how we feel. Not to complain but to educate our other half. They don't know what it's like.
More recently he has been very exhausted from work and wants ME to be quiet in the kitchen - IF your partner has ever had a really tiring day or been really ill and wants to be left alone, then I would explain my needs in terms of something they've experienced.
My partner now comes down with dirty dishes, looks at me, thinks twice and leaves the dishes in the dining room!
 

Asa

Senior Member
Messages
179
Hi,Frenchguy. I’m so very sorry you’re experiencing this. Some things which have helped me:

a low-inflammation diet, incl. no gluten, limited-to-no dairy, red meat, or even fatty, processed poultry like turkey burgers, and limited-to-no processed sugar or grains, even other than wheat.

Low-dose-naltrexone (3mg) helps, plus gabapentin, which does not kill the burning brain sensation but helps prolong the time I can endure stimuli before the pain and fog do me in.

Low-dose hydrocortisone is helpful, as is organic, full-spectrum CBD oil… and often THC tincture or CBD&THC tincture at bedtime.

A good doctor advised me to pace stimuli… do less, take longer breaks…which helped offset the most horrific, but it’s still been years of experimentation. For years, the only thing I could do when the pain set in was find dark, still, quiet, and lay there trapped till the worst subsided.

Meditation--in practicing holding your mind empty for longer and longer periods, and just letting thoughts pass on by, on through like weather… But this emptiness seems to help decrease cognitive and emotional strain on my brain and nervous system and so I believe it helps the burning subside or decrease more quickly.

Alternate nostril breathing has been helpful too in more rapidly decreasing the burning sensation. There may be different methods for such, and I haven’t yet learned more. I have only learned to use each index finger, with each nostril, breathing in one side and out the other. I believe there are neuro studies, as to how this affects brain functioning. It helps me though with head pain, with the burning. Again, I’m so sorry. I know this sensation is hell.

I also take B12 injections twice weekly. And often use FL41 lenses, less now than some months ago. I’ve also used eye covers, noise cancelling headphones and ear plugs together even. When I improve, some white noise is soothing and helps mask tinnitus.

I have also been fortunate, blessed, to have access within the past year to anti-virals. (And years before this, extended antibiotics,beginning in conjunction with a clinic in Germany. Augsberg, perhaps.)

Perhaps your doctor and/or you or loved ones on your behalf might reach out to Dr. Pridgen in Tuscaloosa Alabama, who may still consult with physicians in other countries even. I haven’t shared all the meds I take, so you’re aware that other things are now working for me too. I pray as well and as I grow stronger, read (sometimes partial) prayers/meditations each day.

Keep holding on, keep fighting, enduring. There’s help. It may just take more time to find the right answers or at least better answers. Kindest thoughts to you, your family, your loved ones.
 

Wayne

Senior Member
Messages
4,308
Location
Ashland, Oregon
My partner now comes down with dirty dishes, looks at me, thinks twice and leaves the dishes in the dining room!

Hi @Plum

I've been meaning to thank you for your kind and insightful reply. I really liked your last sentence. The exclamation point at the end seems to indicate this was a pretty bid deal for you--and a happy one no less. :)
 

junkcrap50

Senior Member
Messages
1,333
Which one do you find the most effective for these symptoms?
I’ve tried 10mg of bpc157 but didn’t feel anything from it.
I started all 3 at once. So I wasn't able to distinguish which.

However, I have stopped using BCP-157 (EDIT: after 6 months.) as I do not think it contributes very much to immune modulation. Initially, I was told it did, and immune modulation was listed next to it on a few powerpoint presentations I reviewed. I have noticed no ill effects, return of symptoms, or changes from stopping BPC-157. I still take both Thymosin Alpha and Beta and have continued since starting 1 year ago. So, I can't tell you from personal experience which is benefiting me most.

However, Thymosin Alpha-1 is the peptide which probably has the strongest effect on immune modulation. Most of the research on it is specifically about immune support. It was the original peptide isolated and identified to be responsible for restoring immune function when surgically removing the thymus. https://www.sciencedirect.com/science/article/pii/S0083672916300036 . I thought I could stop Thymosin Beta and save money with only using Thymosin Alpha, but after reviewing the research, Beta does have some immune effect. And due to how beneficial these peptides have been for me, I did not want to risk stopping it. But it appears Thymosin Alpha is more dominant.
 
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junkcrap50

Senior Member
Messages
1,333
@junkcrap50 thanks! How long (and at what dose) did it take to see benefits?

I noticed a benefit very quickly, in as little as 3 days, perhaps 3-5 days to be safe. I noticed it was very quickly after starting taking 0.15mL subQ shots daily (450mcg of TA1, and 675mcg of TB4). I had very high inflammation all over - neuro inflammation and whole body inflammation. So I noticed it quickly reduced my inflammation in a couple days.

I can't tell if it's had longer term benefits as well. Overall I am better than I was shortly after starting the peptides, but I can't really say how exactly. Just overall better. Right now, my inflammation is likely at it's lowest point ever, at least since becoming ill. Perhaps I'm a bit more out going, more personality returned. When attending a few family weddings ~6 months I receieved multiple comments from several people how great I look, despite being noticeably fatter. I think it's was just more "life" in my eyes, personality, and actions that garnered these complements. And I attribute it to these peptides.