Susan’s story – written by Susan –
I’m sitting here in total shock at what I’m reading. It’s like reading my life’s nightmare all over again. I have experienced just about everything all these people claim they went through.
I was a normal very happy girl and very active. I was always on the go. Working and having fun.
My story happened back in 1986. 1 month before my 38th birthday. I woke up with pain in my thumb and lower back. I went to the ER where they claimed I hurt myself on the job but I told them I didn’t. They gave me pain pills and sent me on my way.
The next day I went to work even though the pain pills didn’t really work. About half way through the night I left because I couldn’t take he pain anymore. What normally took 5 minutes to get to my car took 1/2 hour. I drove home at 4am crying all the way home I was in a total pain. When I finally got home I went to get out of my car and I suddenly felt a ton of pain in my upper thighs and legs I could not stand on my two legs at all and fell to the ground. Screaming in the street in pain no one was around at 4:30am to help. I ended up crawling from the street to my sidewalk and up the stairs. I unlocked the door and opened it up and started screaming to wake up my roommate. She came running downstairs to help me and rushed me back to the ER again.
The ER called the CDC, and had a 3 way conversation with Georgia, Washington DC, and California. Trying like crazy to see if I had something contagious. They gave me a cortisone shot and sent me on my way.
2 days later I was sent to a workman comp medical facility. That day my foot was in so much pain my son had to carry me in. The doctor on duty made me walk from the waiting room to the x-ray room I cried the entire way using my toes from my one foot and pain in the other foot. It took me a long time to get there. After the x-rays the doctor requested a wheel chair for me complaining it took me too long to walk. He gave me steroid prescription and said there was nothing wrong with my foot. I told him he was a quack I wouldn’t be in this pain if there was nothing wrong with my foot.
The next day I woke up my foot was swollen it looked like a balloon (I’m not kidding) my toes were sticking up and my whole foot was swollen. I went back where the doctor said it was all in my head. He was not working today. I requested to speak to the man in charge and he came out and I told him what happened the day before and what his doctor said to me. Then I showed him my foot. His eyes about popped out of his head, he said that doctor will never work here again. He asked me to come back so he could take care of me. I said I had enough medical treatment from this crack pot place and you are not going to touch me you’ve done enough damage already. With that said I left.
2 days later I was back in the ER again. My arm was in total pain. I was given more prescriptions for steroids and sent home. I always refused pain killers. Everyone was offering pain killers but all were addictive I was not going that route.
2 days later it finally hit full force. I was now in pain from head to toe. It felt like pins and needles over my entire body. I called my doctor. He put me in the hospital for 4 days worth of testing. I cried in pain the entire time there was no relief, my clothes hurt my skin the sheets hurt my skin. I couldn’t go without clothes. I had to suffer.
I had every test you can imagine. They took tons of blood every 4 hours. I had to drink solutions and get MRI’s and x-rays and cat scans. I was put in tunnels, I had to lay in painful positions etc. I passed every test, there was nothing wrong with me. No one could tell me why I was in level 10 pain from head to toe. Again I was sent home with more prescriptions for steroids. I went from a healthy 115 pounds to 199 in 2 months they gave me so many steroids. And the steroids didn’t even take the pain away! I started to lose my vision. That drove me nuts I HAD perfect vision.
I went to a rheumatologist in a wheel chair. He said what I have no one knows what it is and there is no known cure. Try anything and everything but keep in contact with him before trying things. And most importantly keep a diary of everything. So I did…..
My work called me and I went to see them. I had my finger in a brace, my arm in a sling, my foot in a medical boot and I was using crutches to try and get around even though every movement hurt. They took one look at me and said you can’t work anymore you look like you’ve been hit by a mac truck. I said I felt like I got hit by a mac truck. I told them there was one job in the plant I could still do. Because I still had my left hand working. I could sand burrs off of the end caps of the parts that we had to stop the press when we ran out. He was shocked I wanted to still work after missing 6 weeks. I told him I had too many medical bills so I had to go back to work. He didn’t want me to but he gave in.
It took me 1 year to learn how to walk all over again. I was still in much pain but I kept pushing myself to keep going. It seemed like I was always taking 1 step forward but 2 steps back. Each time I got a little further forward.
WHAT HELPED ME!
Nutra Joint was one of my first discoveries it helped me.
Protein Whey was the miracle for me. Once I started drinking that I got my life back. It only took 8 years to discover the Protein whey. After drinking it for 2 years they changed the formula and my pain returned. I called the company in tears asking what the changes were when they said they didn’t have anymore of the old stuff. A lady that felt sorry for me gave me a list of the changes that were made. I was able to figure out after two weeks I needed to adjust amino acids. I started taking amino acids and the pain went away right away. So that’s how I keep my life normal I drink protein whey once every two weeks now and amino acids one a day.
INSTRUCTIONS: When I first started drinking Protein Whey the first week I started hurting MORE! The guy who told me to try it, said to keep drinking it, you might hurt more before it works. I told him the pain was really bad and I would give it just one more week. By the second week my pain was gone. He said I was giving my body nourishments it was not use to getting which caused the pain to increase at first. I’m glad I didn’t give up I would not have my life back if I had. I started with 1 glass a day every day.
I started looking into other things. For brain fog I take Lecithin (it works great!)
Chlorophyll to rid my body of toxins.
fish oil just because I heard many good things about it.
multi-vitamin WITH minerals…..
I found when I was in water I had no pain! If I squirted the hose on my feet I could walk with no pain. My friend loaned me their pool and spa daily to get an hour or two relief a day. I soaked in the tub as much as I could but I couldn’t live there as much as I wanted to.
memory loss (I even forgot where I lived 1 block away from home once)
Pins and needles
electric shock sensation
some flood lighting caused pain
some store alarms caused pain
I could predict rain and snow based on my pain. (I was better than the weather man)
Loss of appetite but gain a ton of weight due to steroids
Severe loss of energy due to lack of sleep. Pain wears you out.
After a while in pain you think your going crazy, you want to wake up from this night – mare that never goes away…..
I had to learn how to do everything with my left hand because I was right handed.
My right hand had more pain.
Loss of flexibility
HAD TO LEARN HOW TO SAY NO I CAN’T DO IT! (That was the hardest)
Everything I tried hurt!
Restless Leg Syndrome
I even thought I died and went to hell because the pain was never ending.
GETTING YOUR FRUSTRATIONS OFF YOUR CHEST:
I got tired of hearing Dr.’s say it’s all in your head…. I finally told one off. I said, you Sir are a phony, the only reason your telling me it’s all in my head is because you don’t have a clue what’ wrong with me and you don’t know how to treat it. I have a fear of Dr.’s. Why in the world would I make this up to see what I fear the most in life? I wouldn’t! Any Dr. that would tell a patient it’s all in their head should not be a Dr. and should not be practicing medicine. And I do mean practicing….! Maybe someday if your lucky you’ll get it right. A real Dr. would NEVER tell that to a patient. I’m leaving and I won’t be back and you can bet I’ll let everyone know what a phony you are.
Most everything went away…. after the first two years. I got down to a level 7 pain. After 3 years I got down to a level 5 pain. It took 8 years total to feel normal again and be pain free. Once in a while I might feel it coming back but I just drink the protein whey and I’m back to normal again. I tend to forget to drink it because I’m feeling so normal. I only really drink it now once every two week. Just don’t give up! There is something that will work for you. You just have to keep trying to find that remedy. Don’t give up!
Lisa’s Note – I asked Susan what FQ she was given. She didn’t remember because it was 28 years ago that her story started.
** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.
Susan! So happy you’re soon much better! Can I ask you what whey protein and amino acids do you take? I would like to try this. Thank you!
Great story, happy with your recovery!! I also would like to know the amino acids+whey you take. Thanks!
So sorry you lost so many years of your life to this. You are an inspiration. Stay well and thank you for blessing us with your story. I’m six years out and probably 80 percent better, I didn’t have a clue what it was till researching how to cure fibromyalsia naturally. My rhumatoligist said it was for life and I would be on meds for life. Quit the meds and added supplements and here i am. Again thank you for sharing.
Wow. Great to hear you are ok. Have you had any other long term issues other than the a
Occasional pain? Vision, joints, insomnia. Etc?
Suzanne I buy my products at GNC. I am not affiliated in any way with that company. I have not tried any other products. I have to stick with what works for me.
Charles Tooraen no I can’t think of anything except high cholesterol and high triglycerides which I took care of myself naturally.
Thanks holofbc and Dale Sykes for your kind words. I was also told I had Fibromyalgia! Two years after it all started. But that was back when no doctors knew what Fibromyalgia was. That’s why they all kept telling me it was all in my head.
Hi Susan- I have a question- I was taking the whey protein a couple of years ago when I was hit hard- it was the one that erin spangler recommended- now I have been hit again and I think it is the same protein powder that you are talking about cause I was going to start on it again and some people on the site said it had been changed- so is it that it is now missng some amino acids? which ones do you add and what is the name of the protein powder- I just bought a rice protein powder with tons of amino acids but haven’t taken it yet
I need these stories so bad… Thank you for sharing! My biggest thing was memory loss, with some joint and muscle pain (about a 4-6). Doctors don’t listen to me anymore, so I do my own lab testing. After literally hundreds of tests the only thing is that I have incredibly low testosterone. I went on supps but it didn’t help.
Anyways, did your memory ever improve? What helped, Lecithin? I can totally relate to you when you said you forgot where you lived 1 block away… I was a 4.0 nursing student before getting beat down by this poison. I’ve managed to keep my grades up and I am in my last semester of school, but my short-term and spatial memory is so messed up. I can live with my pain level, but I can’t with a broken brain, I also have a difficult time feeling the normal spectrum of emotion, but at least I’m not crying 24/7 like I was the first six months of this ordeal.
Lanceq- that is unbelievable that you say that about the emotional feelings- I cant feel the same emotions I used to feel- I used to always cry at sad movies and stories, and now I cant cry about anything (except my lost dogs)
Felice Tannen here’s the link to the same brand of protein whey I use
just copy and paste the link.
here’s the link to the amino acids I get…..
They should be at any GNC store you can find.
Lanceq here’s the link to the Lecithin I take……
It has saved my memory. I couldn’t keep the job I have if I couldn’t remember the constant changes we keep getting and the testing I have to do year after year. My testing improves every year due to this gel capsule. (A very long time ago my mother was told by an old time doctor to take Lecithin. He also told her not to tell anyone that he said for her to take it. He said he could get in huge trouble for giving her that advice. This was like 40 years ago. He’s no longer a Doctor but doctors back in those days knew what they were talking about.) She’s 91 years old and still has a great brain!!!!! I’ve been taking it for 15 years now. I only get forgetful when I run out and don’t take it.
Hi Dearest Susan,
my heart cried when you said you suffered for 8 years and in between not knowing what to do and no right cure.
I’m glad you found Whey protein to your saver! i also started recently on Whey protein. it’s best to take in the morning after wake up to boost your energy, with breakfast and at night.
feel free to add fiber powder!
Susan- how much protein did you drink? one glass once a day??
Sorry I didn’t answer sooner. My computer locked up and had to have it start over from scratch. Just now got my email up and running. I lost everything I had saved.
Felice Tannen I drank 1 bottle of water a day with the protein whey added. After a few months I went to every other day. After a few more months I went to every 3 days. and so on and so forth. Until I reached my limit of one drink every two weeks. Which sustains me.
Lecithin seems to be helping with the brain fog. Thank you for that suggestion. I always try out what works for people on here for about 6 weeks, and if I don’t see results I drop it. After only 3 weeks I think Lecithin is a keeper. A few other keepers that I’ve stumbled upon is bacopa monnieri, which seems to relax my shaky nerves and greatly help my memory in conjunction with the lecithin. I have also started taking serrapeptase and nattokinase, for my musculoskeletal issues… I’ve seen some improvement implementing those with a my Whey protein.
Anyways, thanks for your suggestions. I will defiantly be adding an Amino acid to my healing protocol. Can’t believe I haven’t done that already, I guess it takes a village to heal a floxie.
Hello Susan, thanks for sharing all of the useful information.
Do you recall what exact amino acids were changed in the whey protein formula? I’m trying to narrow down which one or ones in particular are helping.
Also are you taking just 1 amino acid pill a day or three as the bottle recommends?
PS. I’m reposting this because I think I replied in the wrong area the first time.
Glad to hear the lecithin is working for you Lanceq.
Hi Don, I’m just taking 1 pill instead of the 3 that the bottle says. It’s working for me.
I buy mine at GNC and it’s called Amino 1000 .
thank you, Susan! you give me hope and what worked for you is the same stuff my research has led me to recently but have not tried yet.
I was told by the practitioner who brought cipro poisoning to my attention that healing nerves can create more pain/sensation than the original damage.
so i found it interesting that you felt worse when first taking what actually healed you.
Susan thank you so much for all the good information..I to have brain fog & cannot type very well on the computer sometimes looks like just letters…I will be getting the stuff today that helped you….I pray that you get & stay better each day..I learn something new each day….Thanks again…..We need each others help through this tough journey..doctors sure are no help..My Pulmanory Doctor said it was not the Fevaquin…I told him I knew better..
I feel so tired. I do not know what is wrong with me. Is the cipro?
I just don’t know what to eat for the best anymore.
Does anyone know about Latex allergies? Are the signs and symptoms similar to cipro poisoning.
Susan how much whey in the water