could stay awake during activity, my dr said it was due to my body being taxed out and once we called the pain issue

CORRECTION: could NOT stay awake during activity, my dr said it was due to my body being taxed out and once we CALMED the pain issue


I also want to note I have recently had a blood work panel drawn up that has shown my thryroid and iron, inflammation level- is all ok and in check.

Is a sleep study really needed?

I have chronic Fatigue Syndrome and Fibromyalgia. I also have sleep apnea. I know that all these things make me tired and effect my sleep. I also have PTSD, Bipolar and many other medical problems. Having Diabetes and getting up several times a night to go to the bathroom disrupts my sleep also. Maybe you do have sleep apnea or something else causing you to be so tired. If you fall asleep doing things you could have narcolepsy. or a seizure disorder. I get seizures to I take a lot of medication. my seizures are mild even though I have epilepsy. I rarely ever have seizures I take medication for that but i think having sleep apnea and not being able to wear a mask contributes to me having seizures. If you don't like your doctor you can find another one. But it doesn't sound to me like you have a bad doctor or one that doesn't know what they are talking about. I hated doing a sleep study and sleeping in a strange place so they could study me but they did record my sleep and found out that I have obstructive sleep apnea and i stop breathing in my sleep it causes me to snore.

My dr does have some red flags, and tends to forget what he had me do,on medication wise, tests had me take and why (he is older)... he doesn't bill ins, I have to file the ins and visit. He requires to be seen once a month for refills. Tells me I have fibromyalgia eventhough I have myofascial pain syndrome, they are somewhat similar but NOT the same. He has a disability claim office for those choices, I see him for one specific medication every month. Idk why he couldn't start me on a medication to slightly stimulate me to see if it could help, if nothing helps soon, I won't be able to drive to my appointment out if town to see him. I do not want to drive an hour every month for an apt just to get refills on more then one med if I ever decide to stop the one I need to keep being present monthly for. Could at least give me something to stimulate me during day, to at least helps, as it has been getting dangerous with falling from falling asleep at wrong time and place. If I have sleep apnea, the med won't effect that and I read the sleep study will not directly tell them if and how bad I have chronic fatigue...
My Drs are all out of town and with falling asleep while driving, I need something to help me in the mean time. I do not really have any other major conditions that would effect me.

I would recommend having the sleep study. When I had one, I was able to do it at home, though it might not be as simple for you with the dr being so far away. I went in late afternoon and they got me all set up, then I went back the next morning and they removed all the paraphernalia. It turned out that I do have sleep apnea and, although it took months to get used to, using a CPAP (or at least the variable pressure version of one) has helped.

I admit it has not helped my CFS directly, but it does improve the quality of my sleep and if your problem is caused by the apnea, it should solve it for you. If not, at least you have ruled out one possible cause.

That's what a solid diagnosis of CFS is all about, ruling out all other possible causes - like the narcolepsy art4life19 mentioned. There will also be other tests necessary if you haven't already had them done.

If it turns out that you do have CFS, I would be cautious about taking any sort of stimulant to help you get through. One of the biggest mistakes new sufferers make is to try to push through and do more than your body wants to. Doing so only triggers what we call a crash, leaving you worse off in the short term - and if you are not careful, a permanent decrease in your overall capacity..

As for your doctor, I am actually surprised that as an older man he is both aware of and willing to consider CFS. Many doctors are not up with current research into the condition and either deny its existence, attribute it to psychological problems or try to treat it with graded exercise.

Certainly, if you are concerned about the other issues and feel it is wisest to change, do so - but be aware that it might take some searching to find a doctor who is CFS literate.

As for the pain, that is not always associated with CFS, though it always is with fibromyalgia. I have had CFS for 30 years and have no pain associated with it. My mother, on the other hand has fibro and has far more pain than fatigue. Your doctor may have misjudged that part, but at least he's open to considering it.

I hope things go well for you and we are always here to support you. This is a difficult condition to adapt to and a difficult one for non sufferers to understand. We do understand though.

Thanks for all your responses. With work, and sleep labs backed up and I really don't know how much more of this I can take, I want to get better but do not want to spend a lot of money, running in circles, hard to break from work for numerous conditions and answers to tests when you work full time and the dr is an hour away. I strongly believe I do not have fibromyalgia but my dr has me listed under specific codes and meds monthly, to include Suboxone to aid with the pain aspects from myofascial-
Fibromyalgia. Muscle relaxers, anti nasusea med, anxiety med. Tried anti depression meds ans ssri but had side effects from them. So couldn't take them.
If I can atop and let the fatigue take its course I do, but if it flares while driving alone, like I need to do at times, or a distance of 100+ miles... It's hard to just pull over and sleep on interstate as I live where we get lots of dangerous snow storms and low temps.
The sore, swollen and tender lymph node in throat that goes with it is a clear sign fatigue is really setting in for awhile.
I've tried medicinal Mary at all levels and didnt like it, didn't help; I think once the muscles get in synch again and stop fighting one another, calm down the flare ups, would help... I just do not have the meds that I used to have that worked well for pain.

Thanks for listening and responding.

Just a quick update:
Thanks again for sharing your personal impact and struggle with CFS.
I was able to do an at home sleep test. Was a quick set up and quick results once I contacted the right lab and paperwork properly sent thru.
Turns out it was very clear and clean cut that I had NO apnea! It was all from my fibro- myofascial condition. Ecenthough I know it is a slippery slope to be on stimulants. With needing to work and make it thru days as a functioning being in a safe manner, I was placed on Modafinal. It instantly showed me positive results, I slowly titrated onto the med and found the lowest and safest but effective level that works for me at this moment.
If my body does get overly exhausted and strained, I will have some of the CFS effects but very rarely or it is in the evening when the medication is pretty much out of my body.
I am sleeping SO much better through the nights as well, getting a more restorstive sleep. :)

Hope this info of mine can help someone else whom has similar issues as me.

* Fibromyalgia - myofascial pain syndrome with CFS and repetitive strain sufferer.

I did stay with my attending pain management doctor.

Have you tried dry needling for the pain? It has made a very big impact on my pain levels. You can do the dry needling through a certified physical therapist or acupuncturist. You can plan to get a massage directly after the dry needling which helps as well.
Look into any medication side-effects. Some can cause severe sleepiness.

For ME/CFS, it's very hard to get an accurate diagnosis. One thing that seems to set the fatigue of the illness apart is that more exertion causes more fatigue. There are lots of things to rule out before an ME/CFS diagnosis, like thyroid, Vitamin D, iron levels. They are currently working on a lab test for ME/CFS.

I have tried a plethora of things to help my main condition along with the chronic fatigue. Overexertion seems to be an issue, hard to remeber that it takes quiet a bit of energy to have your muscle stay in a state of contract or to contract and release (spam) chronic.
I have tried: cognitive Behavioral Therapy, strength training (even though the strength part is what I still have that remained unaffected), physical therapy PT, traction, the tens process where they release some anti inflammatory medicine right into the trigger spot, when they use metal objects and deeply massage the trigger areas in PT (can't recall word for it), tens units, heat, ice, stretching, yoga, meditation, cardio, cupping, accupuncture, guosha (spelling?), massage therapy,dry needling, drag, mri, sleep study, thryroid work up, food, diet, with all vitamin levels and energy level checked, trigger point injections with and without cortisone, a full extensive blood panel work up where some tests had to be sent to mayo to run (for my CFS, prior to the sleep test)- all of which came back good, nerve blocks, chiropractic, platelette rich plasma for areas that had a tear or were a major concentrated area where trigger point was really bad, prolotherapy (many do not know of, like dry needling or accupunture but way more intense - aimed to break down trigger points and cause body to think injured- clean area- heal it- release spasm- eliminate pain)-- this worked best for me but ins sees it as experimental - doctors are harder to find which means you travel a ways to see them if you do not live in a major city. Expensive but for me, most helpful.
Over the years, my doctors have tried a variety of medication as well, to include cancer level pain meds, muscle relaxers, sleep aids (as bad sleep cycle due to pain and over exhausted is viscious), antidepressants (which I have bad reactions to them all), medication for nerve pain, a few rounds of prednisone for inflammation control, anxiety meds, Medicinal Mary, various opiates and benzos... not much they have not thrown at me and of course, this means I have definitely seen the ugly aide of side effects and coming off them, as I have came off many and remain free of them, but not without struggle and bad flare ups where you would do anything to have it knocked down, to be able to forget about it and feel normal for a few hours.

I am aware how medications can impact you long term in many ways and have side effects. Right now, medication is the only way to get me to stay awake and be able to funtion to work or have a life, which seems pretty important at the moment. It kind of is what it is for me, even though I wish I could turn back time and know what I know now and maybe could've avoided this impacting issues that feels like a daily test from God on how strong I can be.
Thanks for advising and asking me about testing and dry needlind. I do not think many know of some of these alternatives techniques, really depends on how much you really seek to help yourself vs the western medicine, every answer is pharmaceutical or huge expensive tests that neither help or show what is causing certain pains. I feel it is really hard to find a dr whom really understands muscles, tendons and legiments. How your body structure really works with all the layering of the tissues and how one area can compensate for another and how bad things can really get out of control if not properly aleviated, maintained, controlled or diagnoses right away. None of my pain management drs had been really understanding of all the odd symptoms that go along with muscle pain or my chronic fatigue, they would all think separate issues. Where my sports medicine and rehabiliation Drs whom treat pro major league athletes do understand the strangest things and how or why your body is reacting and how to calm it down.

Overall in my specific case, I believe environmental factors, stress, certain types of personalities that surround you, over use of specific areas of the body, and avoiding certain motions that I know will instantly irritate those areas, along with good rest, keeping muscles without triggers or ropey bands the best I can, certain weather (currently going from -40 to 30 above-- temp swings and the severe life threatening cold) are a few of my main battles. Crazy how all this physical can also really impact your personality and relelationshios... it is truly a fine balancing act.

❤ never give up...

I am so sorry that you are dealing with this.
I was diaged w/ RA and CFS in 2009. The CFS is by far the most difficult to deal with. The first year I spend in a recliner and in bed. I could no longer work , go to a movie, sweep a kitchen floor, cook, or make a bed... for a year. I lost my career, friends and social life.

Now it is much much better. I can work part/ part time, be involved w/ friends (I've made real friends) and family, walk about 3x a week and do yoga.

The things that have helped me the most are:
seeing a nutrtitionist and sticking to the diet plan. No sugar. No sodas / aspartame / no junk food / no flour / and eating well for my body. It began healing my adrenal glands.
I got Meyers IVs at a Doctor's clinic 90 miles away but they are very expensive.
I now take ProArgi9 3x a day. It is worth the cost.
I sleep . a lot.
I go slow and do not rush thru tasks.
I drink a lot of water.
I meditate.
Massage and journal.

It has been a long slow process, but I am much much better. I now no longer teach in a public school but online and have my own classroom in my office.
I have MUCH better friends.
I love to cook now and cook very good nutritious meals for me and hubby.
I say no when I do not want to do it.
I am accepting what I can no longer do.
i grieved my old life. It died. I had to create a new one.

There was no magic wand. But I did move forward. Cold, wintery dark days are the most difficult, but they will pass... and summer always comes back around.

Take care of yourself. Know it does get better. And never give up.

Ginger