At the end of my rope :(

Hi Gemma & welcome to the forum. I can relate to a lot of your issues such as CFS, depression/anxiety & Gerd. It seems like CFS never stands alone. The depression & anxiety forums on Healingwell are very active, this forum is not. I like to come here every week & check to see i anyone has posted.

You are exactly right, the fatigue is different, it is not just regular "gee, I am tired I will go to bed & rest & tomorrow I will be good". No, we wake up tired because our bodies do not make the energy we need, I am hoping they will soon find the answer why this is happening. This is why pacing works for us, we can not do what we used to do, we just don't have the energy. I am sorry to say I have not found anything that has helped me to have my old life back. My vitamin D levels were really low & I take D3 everyday but it only helped a little. I found that getting a good nights sleep has helped me the most. I take Tizanadine, a muscle relaxant, to go to sleep & Trazadone to stay asleep. I still wake up fatigued but I do have a lot more clarity of mind & I can think & be part of my family. As I said pacing helps me to get things done around the house but I have to say that my home is nowhere near what it used to be, my standards have had to give way to what I can do as opposed to what I would like to be able to do. I had to let go of my old life & make a new life. As you can see I do ramble a lot because I have trouble following a train of thought to the end. lol but I have learned to live with it & live within my boundaries. Where I used to garden, hike, work, fish, camp, etc, I was very active. My life now is very sedentary but I get to read & learn a lot, I study my Bible often, I read up on plants & flowers because my daughter put in totes for me to plant a few things in. I do what I love but on a smaller scale.

I hope you find your answers, we all have to go through a trial & error on different things we need to try. I have tried eating many different ways & giving up things like flour or sugar for months to see of it helped. I did find I was sensitive to soy so I stayed away from it for years, I have reintroduced it slowly & can now eat it again. I have tried exercise until I realized that was a no go, etc. You have to finally come to a place of acceptance, then you rebuild a new life. I don't know where you are in the process but it is all important, all needs to be gone through.

Once again welcome, post as you need to & others will come by too. Let me know how it is going for you. Hugs, Denie

Hey, I know what you mean about going to the store, I come home with such a feeling of accomplishment. lol. I loved my job so much & really hated to have to quit but I just couldn't do it anymore. I used to get my feelings of accomplishment from that. My boss thanked me when I said I couldn't work anymore so I knew they were wondering what to do about me. They didn't want to have to fire me. Now that I am not working I seem to be able to spread out my energy throughout the day & sleep as I need to. I have better days now & sometimes it makes me think I can go back to work but then I remember what it was like. I actually went in several years ago & told my old boss not to take it seriously if I ever came in & said I would like a job. I have finally come to acceptance & know I can't work ever again unless they come out with a med that works or a cure. Working was the last thing I had to accept that I was not capable of doing. I see I wrote my name wrong in my last post, it is Denise. My fingers went faster then my brain. Take care of yourself, hugs, Denise

Get checked for Lyme and Sleep apnea. Turns out that's what I was diagnosed with. Problem is I'm not any better with the treatments 6 months later.

Hi Gemma
I am also new to this forum, but wanted to say that my son has suffered from ME/CFS for 7 years. He is 19 and we live in the UK. We thought that there was nothing much that could be done for him, until I read a book called "Healing is Possible" by Dr Neil Nathan.
We have now come out to the US and the doctors are working really hard to find out what is actually going wrong in his body. So far, we know that mould is a big factor. He is also being tested for lyme. He had a lyme test 3 years ago and it was negative, but the testing is still not that great for it. My suggestion would definitely be- don't take no for an answer from any doctor- find one who will take you seriously and who will try find out what is going wrong in your body.

Margolis in Mesa. Arizona-great guy very direct-very good

Hi Gemma,

Wanted to say I understand the fatigue. I'm a surgeon and the best way to describe it is to ask the Dr. if he/she remembers residency and when they were up for days at a time. You get to a point where you basically can only think about sleep and how to sneak off and get even 10 minutes of it in the hospital library. THAT'S the same fatigue we have! I also wanted to let people know, and I'm sure somebody will get on and disagree, that when I finally described this to a MD/Phd (the really wicked smart ones who get 8 years of degrees at the same time in FIVE years) he told me that his office had done the drug trials on Modafanil and he had several patients with CFS that said their lives were truly changed by it and were able to work ONLY because of it. Dr. cannot prescribe it with a diagnosis of CFS. They MUST use "Work Sleep Disorder" or insurance won't pay for it, but it has truly changed my life. The "Fibro fog" is GONE. The urge to crawl back to bed is GONE and for some reason, almost all my dizziness is gone. I won't say all fibro pain is gone but I can exercise and ignore it (I do take Cymbalta for Fibro pain). Honestly, I am in medicine and it suprised me. I think it's worth a try in every CFS patient but you may not get anyone but a psychiatrist who is very educated to give it to you. Not sure if internists would know anything about it. Hubby and I are both Drs (not internists) and we didn't. Hope it helps at least one person!

I have CFS depression fibro anxiety and I COMPLETELY understand how you feel. I tutor 4 hours a week and that is all
I do that so that I can help with med bills. I haven't been to any holiday dinners reunions nothing for 3 years. I have had problems with doctors and health tanking worse due to the dr confusing fibro and cfs and over treating for depression which sent my diabetes up to 520 . I have been so frustrated and the more frustrated the more tired I get. And I resent having to get out of a chair because It hurts so bad. This is the worst time of my life. I have a grandchild coming and all I can think is how will I interact and enjoy them? You are not alone, and it is a lonely life. 3 years ago I walked 4-8 miles per day, went to lunch, visited folks, engaged my students and enjoyed dressing for work in pretty clothes. Now I don't even hang those clothes up. I drape them over the foot of the bed. I have a lovely life but I cant enjoy it and that's the odd part of it. I keep waiting for things to change... If you need to talk message me Gemma. Much love.

Post Edited (Blissy10) : 9/19/2017 6:25:16 PM (GMT-6)

it*s like in the army they ask, " How many years do you have in?"

Having CFS for 6 months or 30 yrs...is seeing and feeling a slow released " illness - bomb" that is or has attacked everything in its way thus leaving a long list of casualties.


BUT You Can NEVER EVER give up.

What is the cause of all of these 21 century illnesses.........STRESS...

With your" Flight or Fight Brain button" always on, or was turned on for too many years,caused your levels of Cortisol to stay at a heightened peak therefore draining all your reserves. And I mean ALL

Can*t get out of bed.....Your brain-body is not letting you push its buttons anymore.

1. E.M.R therapy, research this....
This therapy helps one comes to terms with all our failures and accept that all your "Past is That".

We: who have endured through all this pain have to find a way to rebill a new normalcy for us.
2.
You absolutely cannot get anywhere without eliminating all food groups that hurt your GI tract.

3.
buy supplements at a reputable store.
You are without a doubth needing B-Complex (stress vitamin)
Buy magnesium salts and soak in a bath..... research why body needs Magnesium.
A very high quality Multi Vitamin if you are not able to eat much.

The worse thing to do is to go a a health Food center and get too many products,
see a naturopath. Family Drs. are too overrun.
It is your responsibility to do research and take care of your-self.

4.Make a diary on everything you eat and for exampl:. 40 min. later, felt cramps or bloating etc


5.Read The " Highly Sensitive Person by Elaine Aron"

I repeat to myself often " Space and Pace" meaning:
You need your time alone and absolutely need to pace yourself.

6. google"---- Acupressure points" for CFS or for any subject....( this has been my North Star).

My hands know exactly where to rub and forage for the pain points.

7.Google---- Yoga---- Alternate nose breath

8.Try to talk to someone who knows what real pain is. No one else cares really and we feel dejected and not listened to.
A family member ask me last week: You're having some headaches !!!!!!!!!!!!!

I am a nurse, a mother to 2 adult children 42 44 who have just lived through their 31 year of living with a neuro-muscular degenerative disease.
Both bed-ridden needing 24-7 care.

This is why I know a lot about Auto-immunity problems.

Educate Educate yourself, get off the Pity Train

.I am not preaching: I wish someone had told me, I would have started to heal much faster.

Hope my suggestions help.