When they can’t find something.

[JBoneske]

Interested to hear your experiences.
At first when I got sick it wasn’t that big of a deal emotionally for the first few months. I knew something was wrong and the drs would figure out what it was. Lymes, thyroid, sleep study, anemia, even cancer.
As the months and labs and tests went by and not finding anything I remember becoming more and more worried and scared. After about 8 or 9 months of this I started realizing that I’m in deep shit.
What is going on? Endo and neurology. Nothing. Oh oh.
At this point you don’t even care what it is as long as you know and can live or die with it.
17 months later I do know but am not getting diagnosed. Just lost my job cuz I am simply spent. Have nothing left. House bound pretty much now.
Pretty much been hung out to dry. Dr has nothing left to test. Everything is ruled out. Am i depressed? Hell yes. I pretty much just want to die. Watching everyone you know and see going on with their lives and looking forward to tomorrow and planning things. Knowing that you don’t know what you’re fighting nor does anyone else and miss your healthy, happy life so much and finally realize it’s not coming back can make a guy look up suicide methods. I have been. It actually makes me feel some relief realizing that you don’t have to keep doing this.
Anyway, just wanted to talk. You guys know.
Never wanted CFS because I wanted to make a complete comeback and really appreciate and love my life this time. That woulda been so cool.
Woulda loved to have cancer instead so I could win and make that comeback. You know, have a normal disease that everyone is in tune with and you can kick it’s ass? This really sucks and nobody cares or knows .

 

[E.man]

Yes. We know.
We see you.
If you can get online join 'millions missing ' and help us all get noticed.
You'll find some ME/CFS Facebook groups too.

 

[Charlanne]

We know. We care. We are with you. PLEASE don't give up! Your story sounds very similar to mine. Find a doc that practices "Functional Medicine," likely a DO., not an MD. We MUST keep hoping!

 

[AlleyCat]

I was right there with you last night. I was in a very low place. But I talked with a friend, not about how I felt but how her kids were and her life. Sometimes just to step out of our own misery helps. We all have a life, just different now. I'm still trying to figure out how to manage this new life too. Hang in there!

 

[Wishful]

Yup, it's really scary when you reach that point of realizing that it's not a matter of just one more test which will find the answer and a prescription that will get you back to full health again. It's also very depressing to realize that the medical system doesn't provide help for all medical disorders, and that you have one of those disorders that the doctors don't even want to acknowledge.

It is possible to improve a bit. After 17 years, I found something (cumin: see the thread 'Possible PEM Blocker') that effectively and reliably blocks my physically-induced PEM. That's made a huge improvement in my quality of life. No one else has reported that cumin has the same effect for them, but other people have discovered treatments that help them. It's not easy to find a treatment that is effective for you, but it isn't impossible. It takes time and effort.

As for the suicidal thoughts, I had those too. I made the even more depressing discovery that the various suicide prevention services outright refused to help with suicidal thoughts caused by ME/CFS. "Sorry, can't help you." was all too common a response. I eventually discovered that my suicidal moods were chemically induced by niacin and tryptophan (and B12 at one point). Minimizing those in my diet greatly reduced the suicidal thoughts. Your suicidal thoughts might not be that simple and straightforward in cause, but they quite likely are caused by or amplified by chemical imbalances resulting from ME/CFS. I recommend keeping a food/activity/symptom journal. When I felt particularly suicidal one time, I checked my journal and found that I'd taken a B3 tablet the previous day. Checking further back showed several other occurrences of strong suicidal thoughts following B3 tablets, with a similar correlation with tryptophan-rich foods. I wouldn't have been able to verify that without the journal. That journal arguably saved my life.

I still have significant mental lethargy from the ME/CFS, but I've managed to restore most of my physical capability. It took time, but I feel way better than I did at my low point (like the one you're experiencing).

Now that you've accepted that the doctors aren't going to provide you with a magic solution, you can start on the next phase: experimenting with things that will work for you. Searching the forums here is a good start. We've learned here that there is no 'one treatment for all'. What works well for one might make someone else's symptoms worse. That's just the reality of ME/CFS. There's probably some treatments that will help you specifically. Some might be unexpected and not mentioned by anyone else. Another reality is that some things will give you a temporary remission (lasting hours or days), but then stop working. Depressing, but reality. Just keep trying. It feels really really good to find some relief from the symptoms, even if it's just temporary. It shows that this disorder can be treated; it's not permanent degradation of your body. It's just an imbalance, and it is possible to push it back into proper balance.

Researchers are working diligently on ME/CFS. There have been major discoveries in the last year or two. There are a couple of potential clinical tests being worked on. I wouldn't be at all surprised if this year has a major discovery of the mechanism of ME/CFS, which could point to some possible treatments. I certainly want to hang on to hear that.

 

[JBoneske]

Yes. Thank you very much. I guess there is some potential for a cure coming. Maybe not so much a cure but an understanding of what is actually happening. It seems there’s s problem though because while reading all of these posts and possible things that may or may not help even a little bit, it seems to me that there are many strains of this illness. Most of the symptoms are very common though so maybe this indicates that it will get figured out hopefully fairly soon especially now that there seems to be much more awareness.
I just want to keep it simple and not run around trying to find and hope for something that might help a just little bit and quite possibly for just a while Not trying to bring anyone down or be negative but it’s hard to read these posts of so many using so much energy and finances on a supplement or something they clearly know may not be doing anything or just a little bit. For me, just feeling a little better isn’t good enough,
Some of my family and even dr talk about antidepressants or seeing a counselor. They are like “it might help you 10% or something”. 10%? Who wants 10%? 10% isn’t nearly enough. That makes me more depressed right there.
“Try vitamins or supplements that could help some”. “Some”? I don’t want some.
The reason I get so down is because I’m at the point now that i know I can’t fight back completely against a “normal” disease that is well known and understood. I can’t push myself to go beat it and know I’m gonna recover by making it happen. Just along for the ride and feel pretty much left out to dry. And as i said I don’t want to hope for just a little bit, A little bit makes me feel worse. I want to fight the whole thing with what will surely work and not just bits and pieces with something that may possibly help.
The kind of things that matter to me is as you mentioned that there could be some big discoveries soon, I want to hang around for that too. I want to hear the cause and not try to react to the symptoms.
Again, not trying to be negative but just how I feel about dealing with whatever the hell has happened this last 17 months and counting.
At this point I just want to get diagnosed. That might help a lot just having that.
You guys are awesome and unbelievably tough, People don’t understand.
We do though, It’s thanks again.

Ps, I just asked my dr to check me for Hepatitis C. Some of the symptoms line up as many other illnesses do. I just want something like that or Lymes so I know what I’m battling.
I know there’s no chance in hell I have that though because my life style never really went down that road.
I just keep looking for any possibility for this.
Any of you still do this and if so what are some examples?

 

[mrquasar]

Sometimes just to step out of our own misery helps.

This has been huge for me. Even now that I'm largely housebound with a particular health issue, just watching youtube clips of people with other illnesses or making a phone call to a family member helps to get me out of my own head for a little while, to get some perspective on things and be grateful for what I still can do. The isolation can really get to you if you're not able to go out and see people so it really is important to break it as much as possible if you can.

 

[Wishful]

Unfortunately, helping 'a little bit maybe for a little while' is the option available to us. We all want a clear diagnosis followed by a simple treatment that gives 100% improvement. That just isn't available at this time. It's possible that you have a curable disease that mimics ME/CFS, so you can keep trying medical tests, but if you match the symptoms and development of ME/CFS, it's likely that you've joined the rest of us in waiting for research to catch up.

There are quite a few potential treatments mentioned here (high-dosage CoQ10 for example) that I don't feel are worth bothering with for just a slight improvement. Other people seem to feel that slight improvements are worth the expense and effort. It's up to you to decide what expense and effort is worth a slight improvement for you.

I discovered several treatments that worked wonderfully...for a short time. Others provided longer-term symptom reduction, but only slightly. However, two treatments provide me with significant improvements in my quality of life, reliably long-term. They were absolutely worth the expense and effort of experimenting with all the other things. Also, I discovered various things that made my symptoms worse (tryptophan, B3, fats, goitrogens, nightshade family, antioxidants, and many more); knowing what to avoid has certainly improved my quality of life significantly, and was also definitely worth the effort. Figuring out that B3 induced suicidal moods probably saved my life. So, it's not just a matter of trying to find a supplement or whatever that will give you only 10% improvement. Somewhere out there may be a treatment that makes a major improvement for you. You have to search for it yourself, because the doctors can't do it for you, and it may be something that hasn't been discovered by anyone here on PR, or something which is mentioned here but only as a 'slight improvement' for someone else, whereas it could be a major improvement for you.

At 17 months, it feels like you've been ill and unable to get help for eternity. 17 years of that here. I forget how many years it took for me to simply accept that I just wasn't going to get help from the medical system. It was just last year that I realized that what I had was ME. I thought it was some rare form of chronic neuroinflammation. I found the American criteria for ME/CFS confusing, so I thought that I only had two of the eight symptoms. When I finally checked the Canadian criteria, and the international criteria, I found that I did qualify for ME. After joining PR and reading other people's experiences, I was fully convinced that I did have ME, even though my disorder doesn't exactly match everyone else's (I don't have physical lethargy, for example). We're all different in our ME/CFS.

It helps to have someone who accepts that you have a valid medical disorder. If someone important to you doesn't believe you, point them to PR. Hmmm, I don't think PR has resources specifically for convincing non-believers. That would be useful.

 

[JBoneske]

Unfortunately, helping 'a little bit maybe for a little while' is the option available to us. We all want a clear diagnosis followed by a simple treatment that gives 100% improvement. That just isn't available at this time. It's possible that you have a curable disease that mimics ME/CFS, so you can keep trying medical tests, but if you match the symptoms and development of ME/CFS, it's likely that you've joined the rest of us in waiting for research to catch up.

There are quite a few potential treatments mentioned here (high-dosage CoQ10 for example) that I don't feel are worth bothering with for just a slight improvement. Other people seem to feel that slight improvements are worth the expense and effort. It's up to you to decide what expense and effort is worth a slight improvement for you.

I discovered several treatments that worked wonderfully...for a short time. Others provided longer-term symptom reduction, but only slightly. However, two treatments provide me with significant improvements in my quality of life, reliably long-term. They were absolutely worth the expense and effort of experimenting with all the other things. Also, I discovered various things that made my symptoms worse (tryptophan, B3, fats, goitrogens, nightshade family, antioxidants, and many more); knowing what to avoid has certainly improved my quality of life significantly, and was also definitely worth the effort. Figuring out that B3 induced suicidal moods probably saved my life. So, it's not just a matter of trying to find a supplement or whatever that will give you only 10% improvement. Somewhere out there may be a treatment that makes a major improvement for you. You have to search for it yourself, because the doctors can't do it for you, and it may be something that hasn't been discovered by anyone here on PR, or something which is mentioned here but only as a 'slight improvement' for someone else, whereas it could be a major improvement for you.

At 17 months, it feels like you've been ill and unable to get help for eternity. 17 years of that here. I forget how many years it took for me to simply accept that I just wasn't going to get help from the medical system. It was just last year that I realized that what I had was ME. I thought it was some rare form of chronic neuroinflammation. I found the American criteria for ME/CFS confusing, so I thought that I only had two of the eight symptoms. When I finally checked the Canadian criteria, and the international criteria, I found that I did qualify for ME. After joining PR and reading other people's experiences, I was fully convinced that I did have ME, even though my disorder doesn't exactly match everyone else's (I don't have physical lethargy, for example). We're all different in our ME/CFS.

It helps to have someone who accepts that you have a valid medical disorder. If someone important to you doesn't believe you, point them to PR. Hmmm, I don't think PR has resources specifically for convincing non-believers. That would be useful.

17 years and you finally accepted last year? What were your thoughts during that 16 years? Did you keep looking for something that could be a possibility?
Also what’s the difference between the American criteria and the Canadian criteria? Why don’t you match up with American criteria?
I guess more than anything, I want to be convinced.
I really am convinced but would love to find something else that I can beat.

 

[Wishful]

It wasn't that I refused to accept that I had ME until last year. I looked at the criteria a few times (not realizing that it was the US criteria), and only seemed to have two (pain and poor concentration) of the four required. The 'unrefreshing sleep' was the confusing one. It sounds like a sleep disorder, and my sleep quality didn't change. I do wake with fatigue that wasn't reduced by sleep, so I assume that's what the term means. At the time, I knew that I felt worse the day after strenuous activity, but didn't realize there was a term for it (PEM). In retrospect, I did fit the US criteria, but it was too confusing and I thought it wasn't a good fit for what I was experiencing.

My thoughts during the first year or two were like yours: I needed to find the right expert to fix me up. Then came the realization that it wasn't going to be that simple. Yes, sometimes I did wish I had something 'worse' but known. Then came a period when I dug through medical research papers trying to find something that fit me. Meanwhile, I found things that helped a bit, and things to avoid. Gradually I came to accept the limitations on my life, and kept trying to find more ways to improve it. Discovering cumin's PEM-blocking effect recently made a huge improvement. I'd like to find something effective for the mental lethargy, so I'll keep trying. Apigenin gave a slight but noticeable improvement, but stopped working after a few months. It did show that improvement is possible though, so I'll keep looking.

I just sold some equipment (machine lathe, woodworking tools) because I've accepted that I'm unlikely to get healthy again soon enough to get back into such hobbies. It's tough to reach that point of acceptance, but I can find other things to do. It's actually kind of refreshing to unload all those projects I wanted to do. It was an unexpectedly large burden in retrospect. I'm going to pare down other stuff too.

 

[Wishful]

One other thing about not being 100% sure that you have ME/CFS: if the doctors can't come up with a test that shows that you have something else, you might as well assume that you have ME/CFS and act accordingly. If you do have some other disease that is so rare and difficult to diagnose that the doctors aren't going to find it, it doesn't really help that it isn't ME/CFS.

I'm sticking with ME/CFS as a diagnosis until a genuine clinical test proves otherwise, or until I find a symptom or reaction that absolutely doesn't fit.