FIBROMYALGIA OR MTHFR? METHYLENETETRAHYDROFOLATE REDUCTASE

When I was diagnosed with POTS and IST and Fibromyalgia I knew that there was something causing all of this misery. And I was right! Ll of my research brought me to a POTS diagnosis and when my neurologist told me that I had nerve damage and that if we could find that cause of the nerve damage that healing is possible, I just had to keep looking. I read in December some articles about migraines I think and they somehow lead me to one cause of migraines which is MTHFR(METHYLENETETRAHYDROFOLATE REDUCTASE ) mutations. MTHFR mutations are fairly common. Around 40% of the population have this mutation. I am not a medical person so I will add links to information instead of trying to expalin it all but it amounts to my not being able to use folic acid and other B vitamins. I have what is called COMPOUND HETEROZYGOUS MTHFR mutations( ONE COPY OF THE C677T MUTATION AND ONE
COPY OF THE A1298C MUTATION) If you have CFS or Fibromyalgia or migraines among other issues you should probably be tested for this mutation. The test is a simple blood test (DNA test) and it took a couple weeks to get the results for me. So what to do about this? I avoid folic acid and take methylfolate instead. Along with B12,active B6 and some other supplements. In essence I think that these mutations have caused my nerve damage, pain and other issues. I have started to take my supplements (a month so far) and already I can feel a difference. I have much less achy pain overall. My neuropathy is not much better yet but I am still on very low doses because if I try to raise the dose too fast I feel very ill. This may be caused by a heavy metal burden which I am trying to get tested for. I am hopeful for some healing but I realize that i have had this genetic problem for my whole life so there might also be permanent damage.
If you want to research this for yourself there are a couple websites that are great:

http://www.mthfr.net
http://www.detoxpuzzle.com

I will try to add more information as I learn but my brain fog is unreal right now so if you want to learn more please do a search or check out those 2 sites.

A long line of dietary blunders and truffles

Ok, so I had birthday cake and pizza at the beginning of the month and truffles and Chinese on Valentines. So what? So I think I have finally learned that I have to plan for those times too. The only way that I know of to avoid take out or being surprised with sweets to to make sure that there are healthy choices for me where ever I go no matter what the occasion. I have also learned that if I forget to set up a tray with my supplements (vitamins D,E and C, calcium ,l-tyrosine,fish oil and B 100’s) I will suffer with insomnia and more pain as well as less energy. If I don’t set up the tray I just forget to take them altogether. I have another tray dedicated to my other meds that I need to take before getting out of bed and at bedtime. I noticed too that my favorite sodium drink contains sugar while I had thought it was sweetened with stevia so I cant take that anymore. So for the sodium it is back to taking baking soda and vitamin C in a glass of water which is helpful but it doesn’t come in nice little packets to just toss in a purse or pocket. My neck is a mess and the muscles in my legs,back and neck feel like cement so I am having to do a lot of trigger point work on the which is excruciating so I really need to try to keep the overall pain level down just to have the nerve to start the triggerpoint work. I use a collection of tennis and other balls to lay on the floor and apply pressure to the area that I am working on while I listen to meditation music and deep breathing then I stretch all of the muscles that I worked on and it helps for a while. I don’t know why my trigger points don’t get better unless it has something to do with the dysautonomia and nerve damage. As is the norm lately, I cant keep my thoughts straight so I will catch ya next time.

Autonomic neuropathy,nerve pain and feet and SUGAR

I am really tying to understand the whole nerve damage thing. Apparently while nerve damage can be caused by diabetes there are other blood sugar problems that don’t show up on tests (or the right tests are not being done) that can also cause damage to nerves. This is the reason that I started to eat whole foods and eliminate sugar from my diet, to see if my neuropathy improved. Well, it did improve and every time I eat sugar or refined carbs my nerve pain flares. I made the mistake of having pizza and cake last night for my sons birthday. OUCH!!!!!!! My feet were excruciating last night and still this morning even a sheet touching them hurts so much. If the sugars affect the nerve pain in my feet it must also be affecting all those autonomic nerves too right? Most of the time I have no clue why my symptoms are worse or better but I do know that I have been sleeping better with whole foods (and vitamin D, 5-htp and a few other supplements) and my overall pain levels are lower. Nothing seems to help the brain fog though. I wonder too how much of my pain is caused by nerve damage. If all those autonomic nerves affect digestion,breathing,temperature,heart rate etc they must also be responsible for the pain nerves right? I see all those Fibromyalgia commercials on TV saying that it is caused by overactive nerves. I have lost my train of thought again so I will end here.

My Tilt Table Test Experience

After so many years of being sick and knowing that something was very wrong with me, I finally found a doctor that did not dismiss me out of hand. Actually I can thank my GP for referring me to a Neurologist that had no idea of what to do with me but he knew one that would. He told me that this doctor just lived and breathed dysautonomia, so even though it was a 2.5 hour drive to see him I agreed. Fortunately my parents live close to him so I stayed with them for a few days and they took me to my appointments with him. The first appointment was just a consultation and he told me that I had some form of Dysautonomia and did a poor man’s tilt test. I was really symptomatic that day and was not surprised at his response but he went further to say that he believed that I had nerve damage that was causing it. Wow, to be believed and spoken to like a person with some intelligence was so refreshing for a change. He did a bunch of blood work and made an appointment for me to come back for autonomic testing. I really should have asked more questions but I was just so happy to have the testing done I didn’t. OOps, that was not good. I like to know all about what is going to happen to me and I had read about tilt testing and although it sounded unpleasant I was not prepared. So a month or so after my initial consultation I went back for the autonomic testing which included the tilt table and bunch of other tests that measured sweating and nerve reaction and I had a skin biopsy to test for nerve damage. I was in excruciating pain that day from heel spurs that were inflamed and even while lying on the table for the test my feet were in a position that was sooo painful that my heart rate started off high anyway just from the pain. But OMG, when you are tilted upright it is pretty fast and the whole room went dark and I started to shake and sweat, got nauseous and my heart rate skyrocketed and so did my blood pressure. I felt like I was going to die or faint or both and the pain in my heels was excruciating and you are not allowed to move while the test is going on so I just had to stand on those heels! I was only standing for 10 minutes but in real life I would have sat down or even layed on the floor when I felt like that! I always have control of my position at least to some degree but during the test I had none. I am lucking in that I don’t pass out but that might be because I get a lot of notice and symptoms. If the test had lasted the 50-60 minutes that some do my blood pressure would have dropped and I might have passed out then but that usually doesn’t happen to me until I am upright for quite a while. During the test there are wires etc measuring things like blood circulating to your brain and sweating and there are also breathing tests done while laying on the table. After this is all done I was so wrecked! And then I had to go to another building for a brain MRI while was also horrible because it took an hour of not being able to move my feet and I had to leave Ralph in the waiting room with my parents partly because I know the test was going to take a log time and that he would be concerned about me because I was in so much pain and also Ralph has some metal inside him and I didn’t think it would be safe for him to be in the room with me. Of course when I came out to the waiting room Ralph was surrounded by all the people who of course were petting him and he was in heaven. Thanks Dad! It took quite a while to get the poor dog back into working mode . Please remember that SERVICE DOGS need to be concentrating on their partners and not partying! I really needed his help at that point so it was very irritating to have to deal with that. He is older now and it is easier to get him back on track but its still unfair to both of us. Believe me he gets lots of visiting and love and play,just not while he is working.

All in all I hope I never have to have another Tilt Table Test. It was horrible but at least now I have proof of what happens to me when I am upright. And the EKG proved the Inappropriate Sinus Tachycardia which causes the tachycardia when reclining. Fortunately I take meds that keeps the tachy down a good part of the time (even if it slows it down too much sometimes) and I also take meds (Mestinon) which helps me to be upright longer but it doesn’t help as much as I had hoped.

Dysautonomias,POTS, FIBRO,IST, CMPS and hypothyroid / low adrenal function

Ok, so I have POTS, IST, Fibromyalgia,chronic myofascial pain,hypothyroid, nerve damage which is causing the POTS and IST. All of that means my autonomic nervous system is’t working right. When I stand up my heart races and my blood pressure rises then drops so sometimes I drop with it. I don’t pass out because i get lots of warnings and I get myself to a chair or the floor before that can happen. I am one of the lucky ones, some people just pass right out. Ouch! My nerves are damaged (we are still trying to figure out why) and that is what is causing the dysautonomia (postural orthostatic tachycardia syndrome and inappropriate sinus tachycardia). My digestive system is also affected and so I get nausea,cramping and constipation. My digestion is too slow so I take meds for that. My heart rate and blood pressure go too high so I take meds for that but sometimes it makes both heart rate and blood pressure go too low so I am constantly watching both and adjusting meds for that. I have a lot of pain all over. My internal thermometer is broken so I cant tolerate heat or cold. Once I get over heater or too chilled its very hard to get back to normal. Summer is the worst for me. Everything is worse. I cant stand for very log before I start to sweat and shake get nauseous and weak, breathing hard so I use a wheelchair when I shop and even at home when I am really sick.I always carry a cane and when I am doing better I can sometimes get away with a walker. My service dog goes everywhere with me to help me.My family doesnt get it so if I need help I have to be very specific about what I need even if I always need the same thing 😦 Someday I hope they will understand.

Service Dogs (you must be disabled and your dog must be trained to mitigate your disability) Its the law.

I am so lucky that I have Ralph. I know that he is just a gift from heaven. He just came at a time when I needed him and had the perfect disposition and work ethic to become my wonderful service dog.He retrieve all kinds of things, remote,phone,purse,clothes off floor, laundry from dryer into basket, drags laundry bag to washer, carries grocery bags and even applies pressure to my legs or back to help with pain. He also alerts me to POTS episodes and he will block me from standing or walking if I might fall. He also is trained to brace for me so that I can get up from the floor or chair and not fall. I trained him myself and believe me that is no small task! If you are interested you can read more about that in my service dog blog. If you think that a service dog can be a help to you you should research the idea very carefully. I don’t think most people can train their own service dog or even choose the right dog to train. And then what do you do when your choice doesn’t work out? It has happened to me twice. Lots of people choose a dog and then try to force it to be a service dog and it often ends badly. I was unbelievably lucky to find Ralph and he has been a huge help to me for 7 years now but i don’t know what I will do when he needs to retire which is possible at any time. He turns 8 in a week and he has had his share of skin and thyroid problems.I have been training dogs all my life but I really had no idea of what I was getting into when I decided to train my own service dog or what kind of dog was needed. Imagine a dog that gets grabbed and hugged by unsupervised little kids and parents alike and he has to either enjoy it or tolerate it but as his human partner and I tell you that after the 10th time someone tries to pet him or talk to him while he is working I just want to bite them myself! Rant over …. Please do lots of research and know what you might be getting into.

Healthy people (from 5/9/2009 ) are you grateful?

Do you take for granted your ability to get up shower and get dressed?

how much energy does it take to put on makeup and style your hair?

Can you stand right up from bed and just walk to the bathroom?

Can you stay up long enough to get some coffee or let out the dog?

Were you able to pick up after yourself last night so you arent tripping over things left for a better time?

Can you run to the drugstore for some cold meds to help you feel better?

Or make your own tea when you feel queezy?

Are your eyes too dry to read or watch tv?

Do you feel well enough to have sex ? Do you still feel well enough to be happy about it if you did?

Can you work and provide for yourself?

Can you go out and shop if there is a great sale?

I guess I really just want to know if you are grateful for health if you have it? Do you understand that many many people do not.

Power Recliner? Who knew?

Not me that is for sure!. My parents gave me some money back in December to buy a new recliner because I spend so much time in mine and the spring broke so it really hurt to reach the button bang it in and then rock the chair to get it to recline. So off we went to look for a new chair and the last chair I tried when I pushed the button the chair started to recline on its own!! I checked and sure enough it was a power recliner. And a lot more money than we planned to spend but oh so comfy! Well as I always do when I got home I got on-line to do some research. There are lots of power recliners, some are also lift chairs but I don’t need that and they cost more but I tried some anyway. Eventually I settled on the chair I got and it came on Saturday and even though it is Wednesday I still forget that all I have to do is sit get comfy and then just push a button to reline all the way to flat if I need to.Its wonderful. it looks nice too and Ralphy sleeps in it when I goto bed (if he beats Abby to it).I feel so lucky with my new power recliner and my new Kindle to read from while I recline. What luxury : )

Nausea and cramps :( and a nifty gift from hubby

I must have a intestinal bug because my gut is just so unhappy today. I finally got some relief from drinking some homemade ginger tea but every time I dare eat it comes right back. I am so achy it makes me wonder if I am coming down with something more. With all this lovely snow I cant really get out and do anything so I am just snuggling in with my new Kindle that hubby gave me as an early valentines gift. I had all but stopped reading (which I LOVE!) because holding the books causes me all kinds of pain so he got me this Kindle. Its supposed to be so light weight but I have to say right out of the box it seemed heavy to me. But I did start a book with it last night and I didn’t even get a hand cramp so it looks like this is going to be fun.I think I love my Kindle! I had no idea that you could do so much with these things and there are lots of free books on-line too so it is not a budget killer unless you want it to be.

OMG I just realized that most of my posts in this blog

were never published! I just started a new blog here and was ready to start posting again to this blog and realized that most of my posts were just saved to draft so I will update them and publish them today.If the information is not something that can be updated I will post it with the original date. I really want to keep up with my blogs! Please comment or make suggestions and that will help me a lot.
Anne