Really at a low ebb

[cosmo]

I think that CFS is a much worse disease than progeria. Although Sam Berns can't lift much weight he doesn't have: difficulty concentrating, chronic pain and crushing fatigue. So he is basically an adult in a kid's body. Kids are generally healthy so there's no comparison.

I had cold skin, muscle pain and headaches in the past. Here is the regimen I used. Stacking drugs is alternating them so you don't overdose. My typical regimen was: ibuprofen (400 mg), 4 hrs later tylenol (500 mg), 4 hrs later ibuprofen, etc. I was allowed to take up to three doses of any drug per day. For the cold skin I would wear long sleeved clothes and take a hot bath daily.

Having CFS forces you to acclimate to a new lifestyle, give up unobtainable goals, and make new ones. Instead of material and career goals I was forced to find other ways valuing my life. Before bed I would make a list of things I appreciated during the day. For example, people that were nice to me or helped me, something that turned out well when it didn't have to, completing exercise goals, being thankful for a caring relative or friend, etc. That way you surround yourself with a positive mental environment and it helps you cope.

Treating depression is very important. When I was depressed I did CBT therapy and used SAM-e. I also found that keeping animal protein portions low (2oz) lessened the intensity of the depression.

I had anxiety as well but since you don't mention having that there's no reason to get into it.

It's natural for sick people to feel bad and not function as well as healthy ones. It is not an easy road to live with disabling CFS. I think if you work on your own situation you can improve your life and learn lessons from the experience. Otherwise it won't end well.

I will reply to everyone's kind replies tomorrow as I am very tired right now and will go to bed.

Just to quickly reply to this one post, I think that progeria sufferers are very bad off themselves and I wouldn't say CFS was necessarily worse. They are not just adult looking in a childs body, they suffer from kidney and liver diseases, arthritis and loss of eyesight and cardiovascular problems as well as brittle bones and a tendancy to dislocate their hips. I believe they live their lives in chronic pain.

I think I did mention I also suffer from anxiety too in the post you quoted. I'm awaiting treatment from services on the NHS here for that, they say you cannot have treatment for both depression and anxiety at the same time as it may be too much so they are going with anxiety to put me forward as my sleeping has been disturbed by that recently.

I'm really tired now, so will continue to reply tomorrow. Hope everyone has a good night or day, depending where in the world you are. x

 

[rosie26]

Hi Cosmo, just want you to know that you are in mind. I don't know what else to say........
But lots of hugs to you.

 

[JalapenoLuv]

[quote="cosmo, post: 511021, member: 10862"
I think I did mention I also suffer from anxiety too in the post you quoted. I'm awaiting treatment from services on the NHS here for that, they say you cannot have treatment for both depression and anxiety at the same time as it may be too much so they are going with anxiety to put me forward as my sleeping has been disturbed by that recently.
[/quote]

Since you brought it up, I'll tell you my anxiety treatment. The integrated MD I see was concerned about long term use of benzodiazepines for chronic anxiety so she recommended lavender supplement. I did some research on it and found out that organic lavender essential oil is generally recognized as safe for food (GRAS). I discussed this with my doctor and would stir 1-2 drops in 8 oz of water and sip it until I felt calm. It was an excellent therapy and nonaddicting.

 

[Tammy]

INFINITE!!!!!!!!!!!!!!!!!!!!!!

 

[cosmo]

LDN is low dose naltrexone. It's been found to be brilliant with autoimmune disorders. It's put many people with MS into long term remission, as well as many other amazing stories. I've been on it 3 months, my system seems a bit calmer. There's a very long thread here on pr. I'm linking 2 good sites for information. Some, like me, get it w/ rx from Dr., others get it w/o rx, through online sites. Inexpensive. The yahoo group has posted links to which of those providers have the best quality.

Glad you're feeling better. You're right, most of us are just left to get on with things. That's what makes phoenixrising truly life saving.

http://www.lowdosenaltrexone.org/index.htm

https://sites.google.com/site/dudleyslowdosenaltrexonesites/

Thank you everyone, I'm a bit better today, in a lot of pain but less tearful and low then I was.
I just can't help feeling upset when I think of all the things I would love to do and go and things are just out of reach, however I am starting to think of trying to do things in different ways.

LDN sounds good, I've look briefly at the links and I would like to give it a try.

I have had a little look and I don't believe I can get them prescribed on the NHS, although I could try, I am currently trying to get a private Dr so I have time to explain everything that is going on and get some added help as my appointments last for five minutes and you can only discuss two problems at the most. I feel I need further investigating with some other symptoms I have.

I think I will have a chat to my pharmacist and see what he says about getting it over in the UK.

Thank you for this info.

 

[cosmo]

It looks like Healing Touch would be somewhere in the ballpark of reiki, except there are somewhat different hand positions. You don't actually touch the person, just hover above the various positions and inch or so. You start at the bottom of the feet and work your way up to the head. Reiki looks like it's mostly head and torso centered. I would guess Healing Touch is some kind of mishmash of reiki and some other stuff, or a westernized version of reiki or something.

Note: I just found a page about reiki that says more or less the same thing - http://www.takingcharge.csh.umn.edu/explore-healing-practices/healing-touch
Invented by a nurse in 1980, using a combination of various energy therapies + aboriginal + shamanic traditions.

Since it was developed by a nurse, I've heard of it being offered by hospitals if they're into complementary medicine. The two people I know who practiced it on me were Catholic, so they justified using basically an Eastern practice by comparing it to Jesus' laying on of hands for healing. There is a group in my city who will practice on you for free if you can get yourself to where they do it.

You don't have to have God involved in it, if that is not your thing. It can be any higher power, mother earth, nature, the universe, or just getting centered and having good intentions. My one friend suggested that I could use blues music, since that's something positive and healing that I'm into.

So basically it can be adapted to anything that works for you philosophically. It seems like there is some kind of universal healing force that many groups have discovered and tapped into over the eons, and this is just the latest iteration. Not quite like "the force" in Star Wars - but there's definitely something there.

ps. my one friend who did the Healing Touch on me - says she had fibromylagia bad enough she was having difficulty with her cleaning job. She does it on herself daily and and as long as she does that, she is free from pain and has no problem with her job.

pps. traveling sounds like a great idea if it's something you can do. You have all the time spent planning and imagining the trip, then the actual trip, then something you can look back on later.

Yes they do sound quite similar. I had been looking into reiki recently and was in two minds about it, however I think I need to give anything a try at the moment.

Re travel, I hope to be able to travel, I'm thinking not too far afield, but somewhere I would love to go and somewhere with easy access and transport. Hopefully I can try to make it happen.

 

[xrunner]

Hi @cosmo

I just saw this thread and am glad you're feeling better and that you've found people's posts of help.
Now I'm kind of OK healthwise but wanted to share that was housebound for about three years and your initial post reminded me of that time when I was in a bad shape.
Except for the occasional visit, I was on my own all that time. Mostly confined to bed, or to the sofa on a "good" day, I couldn't read much or spend time on a pc or on the phone all of which could cause me to easily crash, send me horizontal, exhausted and short of breath. At night I could hardly sleep and suffered from recurrent shaking/convulsing episodes.

I lived in London and my main activity, when I had the energy and will, was imagining being on holiday, travelling or simply walking down to the local park to "get some fresh air"...anyhow eventually it got so bad that I had made plans for going abroad to a swiss clinic specialised in "early terminations". That was around 2007.
Fortunately I didn't go down that route and then things started to turn around slowly and gradually till was able to go on my first holiday three years later.

I hope you can soon make it happen regarding your travelling plans and other plans you may have.
As long as we hang in there we can at least always hope and as long as we remain connected we're never really alone.
Best wishes.

PS: I noticed the day you started the thread and felt unwell was a new moon....
I always (and some of us apparently may) feel worse on such days. I thought you may want to take a note. In the future, if it happens again at least you know that things are going to change for the better the next days.