Just wondering if anyone else is experiencing this too?

[Sarahvit]

Hello everyone, I hope you are having a better day. I’m not sure if this is a fibro thing or something else? I’ve had fibro and CFS/ME for over 30+yrs but this is something that started about a year ago. I was doing a optimal wellness program through a wholistic doctor in which I changed my whole diet to healthy meats grass fed beef, free range chicken, weld caught fish, weld game, fruits and veggies that were not genetically modified nor pesticide affected,, mass produced but grown the way God intended with natural fertilizer not harsh chemicals. Anyway the doctor said your body would only loose the weight it needs to. I lost over 50lbs bring me down to my skinny pregnancy weight. Well with that I was experiencing light headedness, dizziness, things going black when I would bend over and stand back up. I would feel weak, faint, like my blood sugar was dropping, like I was out of it or something was off. I wasn’t connecting this with it until recently but feeling like my body was going limp or about to give way for a couple of seconds. Also when trying to speak feel like I was tripping over my tongue. I have a good fibro friend that has been going through similar symptoms but she would “shut down “ like a toy robot drained oof juice.. and fade out for a few seconds before regaining alertness. Pleas if anyone else experiencing this type of symptoms and know what it please share what you have told. My dear is been through a lot. Sorry this is so long. Thank you for any help or advice.

[Blue-52]

hi, Sarah, nice to see you back, sorry it’s under bad circumstances, yes, I get the dizziness, and tongue tire, like you are drunk, also I shut down, I was told by a pain clinic professor, after a assessment, I had cfs, which was affecting me severely, my diet isn’t that good, although I am a pescatarian, and only eat vegetables as well, I tend to graze, rather than eat a meal, when I feel like my blood sugar levels have dropped, I sip a small glass of fresh orange juice, which generally helps, I have had quite a few accidents, some serious due to falling, when dizzy, but I would suggest you see your gp, get bloods done etc.

I hope you feel better soon.

[stravinsky1 in reply to Blue-52]

Hi Sarah, sorry to hear your having to deal with this. I had a short period when I was unstable and had trouble with remembering what I was saying and using the wrong words. I also have CFS plus other health problems. Go to see your GP as mine sent me for blood tests these found I needed iron B12 and some other supplements.

My instability has gone. I still sometimes have difficulty with word finding but am much better than before.

Hope you get the help you need

[Sarahvit in reply to stravinsky1]

Thank you stravinsky1, be sure to keep track of your vitamin B12 levels years down the road. A few years ago my vitamin B12 was low so my doctor had me come in for B12 shots every 2 weeks then monthly then every 3 months and finally just got OTC vitamins B12 which I took 1 daily. Fast forward I saw a new neurologist who checked my vitamin B12 and B6. Well just got my results back and my vitamin B12 was 1,500! Normal upper range 914. So don’t know if that is contributing to this but I have notified my primary doctor and endocrinologist knows about it too. She checked my vitamin D which was up too. So I have stopped taking all supplements with any vitamin B’s and D. I was diagnosed with CFS and fibro back in 94. Thank you again.

[Sarahvit in reply to Blue-52]

Thank you Blue-52, I appreciate your support. Maybe it is a CFS thing. I had another person who said they were diagnosed with CFS that had these same symptoms. I have been to so many doctors over the course of the last year in regard's to this new pain and symptoms that has jumped on board. I was seeing if anyone had been farther down the road with this and knew what it was? Thank you 🙏🏼 💕

[Blue-52 in reply to Sarahvit]

Bless, it’s horrible, be careful, when you feel it coming on, I tend to furniture and door walk, but today, it’s a power chair day , be safe. 🙏

[Sarahvit in reply to Blue-52]

Thank you Blue-52, it happened this morning which lasted a few seconds so just been taking it slow. I have more of a catch the wall for balance. That’s it! It is a balance problem. It just clicked. Those power chairs are nice. I don’t have one but have seen them over that 35yrs. ❤️

[Blue-52 in reply to Sarahvit]

Oh I so wish I could go back to the days when it only lasted a while, now it’s weeks, months, if it is cfs it will increase and last longer, possibly, we are all different, I have had to use my chair, due to cfs and hypo mobility, everything seems to have kicked in.

I am glad you have just clicked, it takes just another person on Hu, to say something similar and boom we know where we are, I’m trying yoga eye exercises, not sure if it’s good or bad, as focus difficult??. ❤️

[Sarahvit in reply to Blue-52]

I sorry that you are experiencing this for so long at each flare. It is very difficult when our bodies won’t let us do the things that we use to be able to do. I recently started doing yoga and stretching because I discovered how tight my muscles have become over the last year. That is kinda funny you mentioned the yoga eye exercises. I don’t remember if what I did back in the mid to late nineties was yoga eye exercises but I had forgotten all about it until I read that you are doing yoga eye exercises. Mine was in a little kit that included different exercises and a string with red beads place every so many inches apart. I think it had an eye cover (black plastic spoon type thing) to cover one eye while exercising the other eye. Then it said to switch eyes and repeat. I don’t think it is the CFS. This is more like a short circuit in the brain or somewhere between the brain and extremities. I was diagnosed with fibromyalgia and CFS back in 94. Someone said it sounded like POTS.

[Patdoyle]

I have CFS and fibromyalgia and get these symptoms too although not quite as bad as you. I find them quite scary

[Sarahvit in reply to Patdoyle]

Hi Pat, I have a friend who has it worse than me. I posted here thinking that maybe someone has found out what it was causing these odd symptoms. I have an identical twin sister who said she gets these symptoms too but not to the extent of mine. She had always classified them as “symptoms”. Yes it is scary not knowing what is going on. I just don’t accept this as a “normal part of aging”.

[Chocoronnie]

Have you looked into POTS? Your symptoms and your friends sound like it could be that

[Sarahvit in reply to Chocoronnie]

No I haven’t. Thank you so much. I was involved in a twin study on fibromyalgia and CFS from 95-05 out in Seattle WA. They flew out 22 sets of twins that one had fibro and/or CFS to run week long tests on us. One of the tests was a tilt table test which my sister didn’t pass. I did fine no symptoms but one day last week I thought to myself “I wouldn’t pass a tilt table test right now”. I will look that up now. Thank you so very much. 😊💕