Floxed

[Cheffo]

Yes I definitely want to leave. Two main symptoms are extreme tendon damage and extreme fatigue. Basically I have been in bed for two years and it’s not even a close call regarding leaving.

it’s torture. I am telling you I am very familiar with Sarno absolutely believe his theories if they don’t apply to when you are literally poisoned.

what you are reading only scratches the very surface. my insurance doesn’t cover MRIs unless I have several thousand dollars to put down which I don’t and the type of damage indicative of this is different than normal damage. It is not a tear necessarily. The collagen matrix is damaged, but I don’t need to spend thousands of dollars and have this sent to an expert far away to know what I have.

but this is not the way it’s diagnosed anyway. it is a diagnosis by exclusion. my doctor already admitted what it was, but won’t admit it publicly or in writing. There is actually no disease where multiple tendons are damaged all at once there is no such thing except this. You could see the tearing in the ankle just google Achilles tendinosis or tendinitis and you can see what it looks like.

they are now sending me to a rheumatologist and a neurologist to rule out things but absolutely do not have arthritis. My joints are fine. Everyone this with this has to play this game and it is very difficult for me to get to these doctors. I might need an ambulanc. I went from completely active. I’m talking a middle-aged guy who can do 20 strict pull-ups. My body is now like a 95-year-old and not even a healthy one

it is literally dangerous for me to stay like this because I have no way to take care of myself and right now. I’m just relying on people helping me, but that’s no way to live and this isn’t living whatsoever. I do have pain but not like the first six months which was extreme, but I am literally in bed 24 hours a day and I can only walk about 100 to 150 steps a day, which is basically to the bathroom once in the kitchen ones as if I was 100 years old.

at this moment I hear a mouse, but I can’t even set a mouse trap so I have to wait till tomorrow to ask somebody

I can’t do laundry or fill up a bathtub. Basically I can get to the bathroom and that’s it but even then I only go to defecate but to urinate I use bottles next to me.

 

[Cactusflower]

@Cheffo
I’m sorry for your struggles.
I too was bed bound for about 2 years, unable to walk much for 1.5 of that. It is distressing, depressing and causes anxiety.
I know you say it doesn’t feel like all or even some of this is TMS, yet here you are, on a TMS forum.
I’m impressed that despite the lack of safety you feel within yourself, and the physical vulnerability of having to be cared for by others, your pain level has been reducing, even though things are still incredibly rough.

What can we do to support you through your TMS journey? What do you need?

 

[mikeinlondon]

Look, I have severe crohns in my colon but I feel not pain. I have severe pain in my hips and legs when I sit but I have no tissue or structural damage in those areas. This proves one thing to me ie that even with inflammation, damage etc the brain can choose to turn on or off pain signals. You can heal from this. The loving family in this website can and will support you.

 

[Rusty Red]

Perhaps your tendon damage is caused by the med. I wasn't contesting that. I know drug injuries are possible. I also know TMS exploration can't cure cancer or infection or fractures. What it can do is change the way your brain processes that painful experience, so while it can't cure the damage done, it can help you deal with the painful results.

 

[momar]

how ar

I am a long time follower of John Sarno, Steve Ozanich, etc. and a firm believer in TMS. I am looking to discuss this issue with people who have had this experience or who are knowledgeable about it. I don't have the right to tell people who can post or not, but that is my preference. Ill briefly tell the story and then talk about the TMS part.

I took Levaquin not long ago. After a few days I started to get tendon damage symptoms. I didn't know what was going on. At first it was my Achilles tendon on the right foot, I thought I must have injured it going up some stairs but that seemed odd. It was red and swollen with tendonitis. While researching how to fix tendonitis I came across information that tendon problems (bad ones, and more) can be caused by the class of anti-biotics knows as flouroquinolones. I wondered if that was what I was taking, and it was. In the US those are usually Cipro and Levaquin, but there are others.

Then I got the damage in my left foot. Then it spread to other places. Right now I can barely walk. My first symptoms were between and three and four weeks ago. If you go on line and look this up its' very scary, people in very bad shape. I am in rather bad shape right now. I was even having those "dark thought" if you know what I mean and they still come and go. Chronic pain, cant walk, its terrifying.

The scariest part is that they don't know how long it will take to heal or if you will ever heal. So there is not much choice to go on the support groups, doctors have no cure. I am on a support group on Reddit, they are supposedly much more positive than the Facebook group so I stay there.

This "floxing" as it is called - because you took a "flux" antibiotic - is very real and debilitating imo. Most people seem to mostly heal, but take a very long time. The quicker cases are in months, many (m0st) take years - it seems average is between one and two years. Some take up to four years and some just go on and on. Many, maybe most, dont ever quite get to 100 percent but seem OK with 70 to 90 percent.

So I have been almost disabled overnight but I am in what they consider the acute stage. That would be describe as the first three or six months. After that most people improve, however slowly, but not all, and some only start to improve after a year even more. Symptoms vary with people but they are are mostly related to the tendons, but because this is the only antibiotic group that passes the blood brain barrier many have neurological symptoms as well and pscyological.

TMS

OK so in my despair I have have been worried, obviously, about things. Primarily, will I be in a painful immobile state a long time and will I possibly have this forever.

I was wondering about the long-haulers, the long-term people. Why are they not healing? Now there are a lot of factors here. Age, how many pills you took, prior health, etc. But still, could it be that some people - the people that have had it for five or ten years and still have not healed, could things have morphed into TMS at some point.

And THEN I read a post from one of the members of this group. This person had it for two years, had most symptoms gone but one foot still hurt. He finally said the heck with it. He said I am just going to "go ham" on this foot, as he phrased it. and he went to the gym and stopped his foot onto the ground hard. The pain went away and he was gone for good.

I though, my God, that is very close to Sarno right there. He told his brain that he is done with the pain and it listened.

Now I think this condition is very real, I have it. Its a nightmare beyond anything ever in my life. Hell.

Having said that, isn't that enough to cause enough anger to fuel TMS and to keep it going?
TMS is so common, the cases that go on and on for years, can't we at least suspect TMS?
Apparently there is SOME healing mechanisms going on somewhere, so if one basically never heals, doesn't that bring TMS into the picture as a possibility?

Any hope would help. It's hard enough thinking I might be messed up for six months to two years or so. It's almost unbearable to think it won't ever heal. Perhaps the long haulers are part, mostly, or all TSM. I mean they are the minority to begin with, it would be nice to know that its even a smaller minority than that, and also perhaps some of those long haulers can avail themselves of TMS theory.

Thank you

HOW ARE YOU DOING NOW ?

 

[momar]

how are you doing now ?? did you recover from your antibiotic issues ? or making progress ?

Hang on a minute. Lets look at this sensibly. Sarno et. al. always said rule out structural issues. You are right about the black box warning. Fluoroquinolones, including LEVAQUIN , are associated with an increased risk of tendinitis and tendon rupture in all ages. So, I guess my question is, have you checked for structural issues i.e. have you had scans that confirm that you have inflammation and/or rupturing of your tendons? If you did have scans and they show damage then you may have a point. If you had scans that confirm no damage to your tendons then I would say it's likely TMS and your language i.e. powerful poison/designed to kill is adding fuel to the fire i.e. increasing your fear and putting your brain in severe danger mode thus increasing TMS symptoms. So, have you had the scans to confirm you indeed have damage?

Is the pain of Achilles tendinosis so bad that you'd want to end your life? There must be something else going on here. Have you been formally diagnosed with this condition? Have you tried any drugs for pain relief?

 

[Bonnard]

Another thing was that this was finally a good time of my life where I was financially free, not rich, but I had a small business I enjoyed and had plenty of time to take walks and exercise and just got a dog. I do not have any traumatic thing like a break up or financial problems, I was Peaceful with low stress and a few friends and hobbies. I had even just found out that I was very talented at playing the drums at age 56 and had time to purchase drums and the leisure to play them.

And I wasn’t even bored like Retirement I still had to work, but I enjoyed my business. It was a little stressful, but just enough to keep it interesting.

Hi Cheffo, This is the part that interests me the most. I suggest going deeper here. And, on the surface, this could be true: "I was peaceful with low stress and a few friends and hobbies." But, what's the ugly stuff that could be lurking low that's just painful & completely unacceptable in some way? What's got the potential to drive you batshit crazy?!

I get it that you're working through some complicated stuff But, are you focusing on the physical so much and in so many ways that you're leaving behind what is really behind TMS?

Wishing you well!