Coronavirus

[Catscankim]

I've had fibro since 1999. I had many doctors over the years that didn't believe in it. Now, since there is an actual blood test that can prove fibro, I find many doctors no longer have sheer disbelief when I tell them I have it. If your doctor expresses disbelief, you need a new/younger doctor.

I haven't found any effective treatment for it, but I still do my research just in case they do find something. My insurance doesn't classify the test as anything other than experimental, so it would be >$1000 to have it done. I am appealing that as I want to be in on any studies in case they do find a treatment.

Just did a quick research on the blood test (I didn't see your message prior to posting my last message), but from what I have seen, they test for low levels of cytokines in your blood. There is a link between the low levels across fibro pts. I think routine blood work would give you that result (??).

I am definitely not disagreeing with you, maybe the site that I just looked at has old information. It has been a while since I did any research on fibro, or even seen a dr for it. Is there a name of the test, that you know of? I would be interested in it.

 

[Jersey Girl]

I was diagnosed with fibromyalgia a bunch of years ago. Peoples non-beliefs stem from not having an actual test to diagnose it other than a clinical evaluation, as well as tests to rule-out any kind of arthritis.

The Rheumatologist that I was seeing suggested taking Turmeric instead of prescribing pain pills, which I hate anyway.



I used to get that twitching when I would get my allergy shots when I was younger...right at the injection site. But it would only last about an hour or so. It's probably just a little reaction to your body not being happy about something foreign being introduced. Maybe try a benadryl?

ok...good to know I’m not the only one. I tried to google it and couldn’t find a thing about it! Lol. It lasted two days on and off but I’m on day three now and it seems to have stopped.

 

[Sudds]

Just did a quick research on the blood test (I didn't see your message prior to posting my last message), but from what I have seen, they test for low levels of cytokines in your blood. There is a link between the low levels across fibro pts. I think routine blood work would give you that result (??).

I am definitely not disagreeing with you, maybe the site that I just looked at has old information. It has been a while since I did any research on fibro, or even seen a dr for it. Is there a name of the test, that you know of? I would be interested in it.

I just had pre-op blood work done so went and looked and there aren't any cytokines listed that they were looking for, so I don't think routine blood work is going to give you an answer. The routine stuff is lipids, glucose, red and white blood cell count, kidney functions, etc. Nothing out of the ordinary. I also have fibro, and my dr is very aware that it does exist, although there is nothing to help it either! I go to the 6th ranked hospital/teaching hospital in the country and where I used to go is the 2nd ranked hospital/teaching hospital so am pretty sure they would know if there was something that would give me relief. You can also try CBD oil for the pain. I use it for another problem and my gut dr. is now prescribing it to others because it works so well. Thank heavens I am getting an implant in May that should alleviate my problem entirely, Oh Happy Day!

 

[Susie]

I just had pre-op blood work done so went and looked and there aren't any cytokines listed that they were looking for, so I don't think routine blood work is going to give you an answer. The routine stuff is lipids, glucose, red and white blood cell count, kidney functions, etc. Nothing out of the ordinary. I also have fibro, and my dr is very aware that it does exist, although there is nothing to help it either! I go to the 6th ranked hospital/teaching hospital in the country and where I used to go is the 2nd ranked hospital/teaching hospital so am pretty sure they would know if there was something that would give me relief. You can also try CBD oil for the pain. I use it for another problem and my gut dr. is now prescribing it to others because it works so well. Thank heavens I am getting an implant in May that should alleviate my problem entirely, Oh Happy Day!

No, this is not going to be diagnosed with routine (or even non-routine, but covered by my insurance) blood tests. Home - FM/a
It is a genetic test. I have tried CBD, Cymbalta, and Gabapentin. None of them really help fibro, although the Gabapentin helps with my neurogenic claudication. I will end up having surgery for this, but not until I am unable to walk standing up straight, as I am leery of any surgery involving my vertebrae and spinal cord.

 

[Obsidian]

No, this is not going to be diagnosed with routine (or even non-routine, but covered by my insurance) blood tests. Home - FM/a
It is a genetic test. I have tried CBD, Cymbalta, and Gabapentin. None of them really help fibro, although the Gabapentin helps with my neurogenic claudication. I will end up having surgery for this, but not until I am unable to walk standing up straight, as I am leery of any surgery involving my vertebrae and spinal cord.

Lyrica is the only medication that helps fibro pain for me, it actually stopped all pain after just a couple doses. It was amazing but unfortunately, had side effects that wasn't worth it.

 

[Susie]

Lyrica is the only medication that helps fibro pain for me, it actually stopped all pain after just a couple doses. It was amazing but unfortunately, had side effects that wasn't worth it.

Yep, I know all about those side effects. Not being able to sleep is a problem already, that just amped my insomnia into the cosmos. Didn't sleep for 3 weeks after taking it for 3 days.

 

[Obsidian]

Yep, I know all about those side effects. Not being able to sleep is a problem already, that just amped my insomnia into the cosmos. Didn't sleep for 3 weeks after taking it for 3 days.

Ugg, I hate being a insomniac. Doc put me on seroquel and I'm actually sleeping full nights now. First time since I was 13.

 

[Susie]

Ugg, I hate being a insomniac. Doc put me on seroquel and I'm actually sleeping full nights now. First time since I was 13.

I can't take Seroquel. One of the many drugs that cause absolutely no sleep whatsoever insomnia. I am on Lunesta. I get a consistent 6 ish hours/night until my body gets used to it and I have to go off of it a week. But I really sleep those 6 hours. Better sleep quality than I have ever had. And I am glad someone else started insomnia young. I can remember long nights awake starting when I was in first grade. I try to tell people that I have always had fibro because I can also remember not being comfortable leaning back on chairs because they hurt my back when I was that young also.

 

[Booker]

I saw an interesting interview with a doctor on Dr Oz and he was saying they are studying and may recommend that people who have been infected already may only require one dose of the moderna or Pfizer as a booster to ensure their full immunity..That would also free up more vaccine for those who haven’t been infected.

Yes, that would be a good thing! Thanks for the share.

 

[Obsidian]

I can't take Seroquel. One of the many drugs that cause absolutely no sleep whatsoever insomnia. I am on Lunesta. I get a consistent 6 ish hours/night until my body gets used to it and I have to go off of it a week. But I really sleep those 6 hours. Better sleep quality than I have ever had. And I am glad someone else started insomnia young. I can remember long nights awake starting when I was in first grade. I try to tell people that I have always had fibro because I can also remember not being comfortable leaning back on chairs because they hurt my back when I was that young also.

I don't think I've ever tried Lunesta. Usually my drs want to use mind altering drugs to treat my depression and anxiety since they think thats where my insomnia steams from.
I'm just glad to find something that works, I was getting 2 hours sleep a night, now I'm getting 7-9

I can't remember if I had sleep issues as a small child but I do remember multiple trips to the dr for back pain when in grade school.

 

[AliOop]

Usually my drs want to use mind altering drugs to treat my depression and anxiety since they think thats where my insomnia steams from.

I think the opposite is often true, don't you? I mean, sleep deprivation is used as a form of prisoner torture because it severely alters brain functioning.

My husband has several sleep disorders (including RBD) that dramatically impact my sleep, both in quality and quantity. After just two bad nights in a row, I'm depressed, anxious, cranky, unreasonable, and unable to be satisfied with any amount of food, particularly sweets. When we get to that point, a couple nights of sleeping by myself in the spare bedroom works wonders.

All that to say, I think you are smart to focus on fixing the sleep issue first. So many things flow from that!

 

[Susie]

Doctors always want to start with mind altering drugs. They think all insomnia is from anxiety/depression/ADHD/bipolar/etc. They ALWAYS try to give me those. I had completely given up on getting any treatment for the insomnia, but I hit a bad patch for months where my a-fib was waking me up routinely an hour after I got to sleep and about 4-5 times an hour thereafter. My diabetes became intractable, so no amount of insulin was helping. They HAD to do something. My doctor suggested all of the antidepressants before even discussing something strictly for sleep. She then asked about Ambien, but as it makes me sleepwalk and try to sleep drive, that is right out of the question. She finally suggested Lunesta, and it is wonderful.

 

[Zany_in_CO]

A natural alternative for insomnia is Melatonin, a hormone. Dr. Oz did a whole show about it. When I can't sleep, I take 1 mg and wake up feeling rested and I have no drug hangover. But I'm very sensitive to drugs, even "natural" supplements, so the minimum dosage available is what I take. Any more than that and I feel lethargic the next day.

 

[Susie]

I have tried so many different dosages of Melatonin over the years, the doctors have given up suggesting it. I have tried every OTC and Rx medication out there for insomnia.

 

[KimW]

I have tried so many different dosages of Melatonin over the years, the doctors have given up suggesting it. I have tried every OTC and Rx medication out there for insomnia.

Valerian root?

 

[Zany_in_CO]

I have tried so many different dosages of Melatonin over the years, the doctors have given up suggesting it. I have tried every OTC and Rx medication out there for insomnia.

Oh, I'm so sorry to hear that! A good night's sleep is so important for health -- mental, emotional, psychological and physical. What about Yoga? Excercise in general? Think "10,000 Steps" Program. The last time I did that I slept like a log. It's good to be out and about in the fresh air and sunshine. (I think I need to take my own advice! )

Then there's always my Auntie's solution. When she got older, she had a shot of bourbon first thing in the morning, to "Get her heart started" LOL and another one before bedtime. She lived to be 105!!!

 

[Mary M]

I recommend a topical magnesium cream applied before bed. I had difficulty sleeping while going through Chemo. It was and it still the best option for me. My daughter has also used it for my grandson at age 3 while he was having night terrors. It is safe and has no side effects like I had with melatonin, cbd, or magnesium pills.

 

[beckster51]

I recommend a topical magnesium cream applied before bed. I had difficulty sleeping while going through Chemo. It was and it still the best option for me. My daughter has also used it for my grandson at age 3 while he was having night terrors. It is safe and has no side effects like I had with melatonin, cbd, or magnesium pills.

I am quite curious about topical magnesium cream. Where do you get yours? Where do you put it and how much? The older I get, the less I sleep, and I can tell it is really affecting how I feel.

 

[Mary M]

A good nights sleep is crucial for me also, I’m 68 and we live with my daughter and her family. My grands keep me on my toes. I began making my own 5 years ago after cancer treatment and still do. I apply approximately 1 tsp of the cream to the bottom each foot and put on a pair of light socks or apply on my tummy before bed. There are some good magnesium creams on the market. I use Anchient Minerals Magnesium flakes in my cream and recommend it for its quality.

 

[linne1gi]

Have you tried a weighted blanket? I’ve been getting leg cramps that wake me in the middle of the night and the weighted blanket has been great. It’s hot & I live in South Florida so I only put it at the bottom of the bed but it’s awesome.