I think u r wonderful and so dear to try to help me! I can not tell u how sorry I am in the way you got treated. I am going to have to print your letter and read it better. I think I mentioned, on top of it all I have chronic leg pain that pysteriously showed up one month after moving here, I was an exercise nut for about 26 yrs, but good grief, many people have done more...bottom line the doctors are not good at diagnosing. I won't go on about me.
I know there is no cure and am so mad that there is no funding for ME or awareness...only depressing articles. I will try to get back to u, I am hurting, my son's friend ruined the laptop that he had given me. It hurts sometimes to sit by the computer.
I would love to know what your doctor gives you for symptoms. My husband heard from a man with a case just like him. He spent thousands of dollars and used the IV for 2 yrs. Not one thing helped. I met a woman online who got great relief from the IV. Just so happens she had relatives who were in the medical field.
Sami, if u don't mind, I would like to pray for you. I do belive in miracles. I thank u for taking the time to write all that u did. I know it isnt easy for you. I would love to hear of any tips and what the doctor gives you for your symptoms. It seems like my husband has it bad. His dad had MS--could be a link? A most depressing article was in Hummingbird. I want to know who writes these articles if they aren't doctors, no initials after their name, how do we know how true they are? I have gotten sceptical of much of what is written for various things. There can always be a slant or opinion or lie depending on the source and too many will pass it on as the truth.
Bless u Sami and thank u again.
bless your heart, prayers are always welcome. in the past 25 years i have prayed often and been prayed for often, and have seen a lot of things drs don't believe can happen.
a lot of the people who write the articles are either speaking from personal experience, talking about
what they have learned, or are quoting experts. on Hummingbird, many of the papers are written by the owner of the website, but she refers to many experts before putting anything in print. she is a good, honest, and very caring person. we have talked about
many of the things you have said, for example trying to "get the word out" about
there was some good news from Co-Cure a couple of days ago. well, it was sad news in some ways, but when the BBC runs a major piece about
a woman suffering from M.E. we know there are people paying attention. it's a start, though i honestly don't expect to see much in what's left of my lifetime. i'm almost 60, and my various health conditions don't make me a prime candidate for reaching old age. not that i mind, it's not in my hands except to take the best care of myself that i can.
i don't receive much in the way of treatment. a friend in Arizona benefits from saline IVs and magnesium IVs, but i don't find them helpful, probably because my veins won't hold an IV. i take a muscle relaxant on an as-needed basis, as well as something for nausea and sleeping tablets. i also take a lot of Ibuprophen (mostly for inflammation). i'm blessed to have high pain tolerance, but i have yet to learn how to manage the total exhaustion, dizziness, and weakness without help from medications.
the trouble is, from all i've heard, that no two people respond equally to the same types of treatment. usually it turns out to be the least complicated and less expensive treatments. the way i see it, if someone's advertizing a treatment, it's probably not worth my time or money, but then i'm awfully skeptical due to so many years of people posting or advertizing a "magic bullet". nutrition is important, and by that i mean nutritious foods. I know a few people do benefit from them, and i think they're worth a try, but usually a simple multivitamin is useful. for me, vitamin E, in low doses, is a blessing as it relieves many of my muscle cramps, and a friend takes an adrenal supplement ... i forget the name, something like Insocort? ... that she says has made a huge difference.
i should add that my dr doesn't "believe in" M.E. but because of my other conditions, he's often willing to treat some of the symptoms. sometimes i have a bad reaction to the medication, other times it helps a lot. i'm trying right now to convince him to rx oxygen for me. during a recent visit to emergency they gave me oxygen and i couldn't believe how much better i felt for the next few hours.
i also find any bit of massage, especially on my shoulders, really helpful. it helps with the pain and also allows more blood to get to my brain, which i reckon is a good thing.
i'm just taking a shot in the dark, but it almost sounds to me as if you may have fibromyalgia and/or myofascial pain syndrome. there's a lot of information about
both, so if your dr is being a dunce, maybe you could at least get an idea if that's the problem online.
well, i won't chatter on. i'm so sorry to hear about
your laptop, and i know how hard it can be to sit at a computer for long. it doesn't take long before the pain and balance problems make it hard to concentrate on what i'm trying to say.
If we have no peace, it is because we have forgotten that we belong to each other.
ME/FM/CMP, IBS, osteoarthritis, cervical spondylosis