Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
I watched the film UNrest last week, she did an incredible job on it, so powerful. About 20 years ago I saw the film on CFS "I remember me", which also showed patients who were so extremely bedbound, or would have episodes of not being able to stand or sit up. For years I have had trouble standing, as I knew I had spinal pain from compressed nerves or joint problems from hyper mobility etc, and I chalked up my near faint episodes of having to lay down on the floors of public places as a result of pinched nerves and something not getting up to my brain. After a spine dr did more exrays last year and said he saw no cause for my not standing, and shrugged something as I walked out the door about low blood pressure, I started researching that angle and learned the term POTS. I joined an online group for that and could relate to much of what others posted.
I haven't seen any CFS discussion about the inability to stand being related to low blood pressure....have I just missed this? Is this what us going on with many of us? Make sense there coukd be some autonomic dysfunction in us.if I'm using the right term. Anyone else who finds they spend a lot of time in bed, find it is related to blood pressure? I've never felt good standing for long, and just assumed everyone was like that or I was just more lazy than others. But laying down, especially if I can lay completely flat with my head flat, seems to make a world of difference in how my body and my brain feels...like I can think more clearly laying down. Of course when I am in public and having to stand, and can tell I'm about to faint, I just get to the floor asap, always embarrassing, but no way to see what my BP was doing.
My BP machine has been broken awhile and I was resesrching good deals online and saw not only do they have wrist ones now which would be even easier to use, but those that are small that folks use for athletic reasons. Anyone have experience or recommendations on the wrist or the athletic ones like Fitbit? And are the folks who are bed bound there partly because blood pressure drops when sitting or standing, or is there something else going on? Any thoughts appreciated.
So my main problem always is weakness or fatigue through my whole body and I do not know what causes the fainting, but it is not from low blood pressure in my case.
Liquorice root will increase your blood pressure. You can take it in a fluid extract or make a tea from the dried root. Love and healing to you.
They strap you to a table (now THAT's good for your bp, huh?), lay it flat and put a bp cuff on and leave you for 15 min to rest. Then they tip the table up to upright and watch your bp to see what happens for a while.
It's not perfect but it seem the best they can come up with.
My naturopath did it the old fashioned way.
She had me sit normally and quietly and took my bp (manually) then had me stand up and did it quickly to check it. I went from approx 105/65 to 87/ 52. She declared I had it and her note to my doc got it on my record.
I have the most trouble when I get up from seating, walk a bit and then stand still. She said it's because walking keeps the blood moving. For example I'll drive/ride to the grocery store. Get out of the car, walk 100 ft to the deli and stand there. I'm fine while walking but if I stand at the deli in one place for more than about 2 minutes I am going to get very weak and end up on the floor. So if the situation demands I stand for a couple minutes I tend to walk in place. Kind of embarrassing so it's easier to bring the walker with the seat...
What helps me if I know I'm going to need to move around on my feet a bit is caffeine. But well, like everyone I pay for it later..
I'm like you..I can walk better than I can stand, although I still can't walk more than 20 mins or so due to my spine. I was going to take the tilt test this last year while applying for disability, but the ear dr who did the test, and the neurologist couldn't agree on whether I needed to go off what meds. Then the med assistant over phone didn't understand how to interpret stopping them 48 hrs prior to the test...I knew I'd be in pain, get no sleep and relapse if I went without meds for even a day and night so I gave up on it. Was watching some interviews of Jennifer Brea and then Dr Klimos last night and they both mentioned pots is common with CFS, so got that clarified. Wow, Dr Klimus is so amazing, I ev n understood most of what she was talking about in a lecture to medical people. Wish we had one of her in every city and we would all be well! I hope you are doing well.
I was diagnosed with POTS at an autonomic center. From what I understand POTS and CFS often go hand in hand, but I believe I first developed POTS from a serious case of food poisoning and birth control pill reaction and then developed CFS from mono. I am actually pregnant right now, but before my pregnancy I was getting tested by a CFS specialist in CA who found that I had almost non-existant levels of vasopressin. This may be part of the "root cause" for my POTS. I've actually been to two autonomic centers, both have done quite a bit of testing looking for root cause, which sometimes you can find with POTS. You can at least rule quite a few things out. The specialist in CA also found extremely high viral titers of EBV in my system, which I believe is contributing to or causing my extreme fatigue.
I use a FitBit every day and LOVE it. It has helped me cope with the symptoms more. I can also see when my HR is getting above my anaerobic threshold (125bpm) and sit down. My threshold was determined at the autonomic center, but differs for everyone. I use to blood pressure cuff and my BP often runs very low. If I chug water and put my feet up I can usually get it up a bit.
I get lactated ringers (IVs) at a hydration clinic. I get them once a week now, but sometimes as much as twice a week. It's the ONLY thing that has helped the tachycardia that goes along with my POTS. I think everyone with POTS should be getting them, there is a lot of research that goes along with it. It's been a struggle, but I'm hoping I will be able to look into some new treatments after I give birth. Good luck!
I can't imagine being pregnant with these strange things going on medically, so I hope it all goes smoothly for you!
(https://www.sentara.com/hampton-roads-virginia/medicalservices/services/neurosciences/services/sentara-neuromuscular-and-autonomic-center.aspx).
If you google it, you can watch some videos about it as well. It was a very good, state of the art, professional testing facility. They are able to determine the type of autonomic disorder and they also look at many factors trying to determine root cause. They said they find root cause in about 50% of cases. While they weren't able to with me, they ruled out many things which is good.
The CFS specialist is located on the other side of the country, in CA. It's The Open Medicine Institute and from my research, one of the top ones for treating CFS. They did MANY tests that I had never had before in 12 years of being sick. He came closer than anyone has to finding or determining some type of root cause, but as I said, I didn't get to do any more because of the pregnancy. I will pick it back up after I deliver the baby.
I have gone through a pretty terrible time with my illness, but what I have discovered is to not to waste time with anyone who isn't a top specialist in this illness. They will mis-diagnose, waste money, time, and energy. They will "treat" you with the wrong medications that only make things worse. I know it's expensive and time consuming, but I would start with the best in the field. I wish I hadn't wasted time with doctors who didn't know what they were talking about. If so, I might be a little better by now...
The pregnancy has been very difficult with CFS and POTS. It is my second one. Just trying to get through it, only about 3 months to go. As much as I am troubled by my illnesses, I did a natural birth last time, so I am hoping to again. The body can surprise us in a good way sometimes I guess :)
Hope this is helpful. Let me know if you have any questions about specialists, I have done a lot of research on it and can send you a list if you want.
Once you go over that rate, especially with CFS, you are more likely to have symptoms and get a "crash"... fortunately mine was 125bpm, but some with CFS are much lower which explains why it is a very difficult condition.
I'm in Kansas City area, Midwest and no way I could travel by myself. Have you happened to run across anyone specializing in any of our CFS related stuff in this area. Joseph brewer is only one well known, but he hasn't accepted new patients in years and then only accepts referrals from certain kind of other specialists. I talked to his office last fall and they didn't even have suggestions where else I could try. I agree it is not worth wasting my time, mental health, or money on dr who aren't sophisticated...so I just use my go to try to get scripts I've already learned about from my own research. I'm restricted to my iPad in bed though, and difficulty taking notes with paper and pen cuz my fingers painful and numb, so research is frustrating, and my brain is not working well enough to learn these new medical and technical terms...I read them on here and my brain just goes fuzzy!