Feel like giving up

[littlebird6180]

First, I'm not an active contributor here so sorry to only post when I need answers--but I have two little kids, work full time and am just so sick. It's not for lack of caring or being selfish. Not trying to make excuses or imply my life is any more hectic than anyone elses, but I just don't know how to juggle more than I have right now.

I feel like I'm ready to wave the white flag and admit defeat. I feel like all I'm doing is bleeding money, going to multiple specialists, taking buckets of supplements and LDN, having so many medical tests and I still feel exactly as awful as always. I'm so tired of doctors right now. I have an appt with Dr Vincent in Alaska in April but feel more fear than hope about LDI. And my family wants me to go to the Mayo Clinic in Scottsdale but that would be a fortune ($$ I don't have) and I feel like I'll just spend money to hear conservative doctors tell me that I'm just tired from my kids or work. I had 3 days where I felt amazing and thought it was the LDN but haven't been able to recreate it.

I'm seeing some of the top specialists so you'd think I'd feel even an iota of improvement but I don't. They just want more blood, more imaging, more drugs to experiment with which means more time, more energy, more money, more side effects.

Does anyone here think the Mayo is worth it? I'm definitely going to keep my appointment with Dr Vincent but the results seem to be hit or miss.

I feel terrified that I'm going to die young and not see my children grow up. It feels like my body is just gradually shutting down on me. But no doctors seem to fully understand or be able to do anything to help me. So the onus is on the patient (who is already fully depleted of energy) to fight for their health. Is there a point though where you have to say "hey, i've tried it all. this is just the hand i've been dealt and maybe there is no solution"? I don't want to bankrupt my family if there's no cure or I'm only going to marginally improve my quality of life.

 

[helen1]

@LittleBird

Sorry you're having such a rough time. It's extra tough when you can't get enough rest. Please don't feel bad about whether you post or not as nobody has any expectations of regular posting here!!

As far as Mayo goes, several members here have posted about going there, and none have been positive that I recall. You might want to do a site search to find those threads. Pretty sure @JaimeS was one. Maybe she'll chime in.

 

[minkeygirl]

I agree with @helen1 re: mayo. I have never heard one positive outcome from them. People like them because they are a hot shot hospital but they don't know much to help us. If you are seeing good specialists then hang on to that. That is more than many people have. I wish I had someone willing to do that. If you feel overwhelmed then step back and take a break and reassess.

I have an appointment with Dr. Vincent and I'm more optimistic about what he can do than anyone else I've seen. You have to remember none of us have the same immune systems or problems. He says it takes experimentation. His protocol, which is available now, sure beats waiting 4 or 5 years for rituximab which may not even work for a subset of people or ampligen, both of which are probably going to cost tons.

I don't look for a cure or even remission. I look to make the quality of my life better.

 

[Ecoclimber]

@LittleBird

Sorry, you are going through your struggles. It's really tough going through this disease but don't give up. Does your employer provide long term disability insurance? @Rebbecca2z has documented her experience in a thread in the new members only section about Mayo. Feel free to reach out to other members of the community in the members only section for emotional support and ME/CFS discussion. Never give up hope, it is a challenge but you can win this battle! A blog that I follow is http://elizabethmilo.com/ that you might find inspirational and informative and another blog site on probiotics/ the microbiome/gut flora/ME/CFS https://cfsremission.wordpress.com/quick-start/

Eco

 

[JaimeS]

First, I'm not an active contributor here so sorry to only post when I need answers--but I have two little kids, work full time and am just so sick. It's not for lack of caring or being selfish. Not trying to make excuses or imply my life is any more hectic than anyone elses, but I just don't know how to juggle more than I have right now.

It's okay. Here's what I do. When I want a question answered, like this week (IgA), I hang around a bit and answer other people's. There's no pressure, but even hitting 'like' is giving back.

Does anyone here think the Mayo is worth it? I'm definitely going to keep my appointment with Dr Vincent but the results seem to be hit or miss.

I can't tell you whether it's worth it or not, but there's a good synopsis of my experience with Mayo here which is continued here, and a post detailing how helpful I found my visit to Mayo overall here. For the short, short version you want the last one.

I feel terrified that I'm going to die young and not see my children grow up. It feels like my body is just gradually shutting down on me. But no doctors seem to fully understand or be able to do anything to help me. So the onus is on the patient (who is already fully depleted of energy) to fight for their health. Is there a point though where you have to say "hey, i've tried it all. this is just the hand i've been dealt and maybe there is no solution"? I don't want to bankrupt my family if there's no cure or I'm only going to marginally improve my quality of life.

DON'T GIVE UP. I'm in my second year of acute awfulness and have been steadily improving for a year. Every once in a blue moon I find someone really helpful or find something else to take or do that noticeably improves my QOL. I sometimes feel just like you feel, especially when I've crashed and I'm not really sure why. That sense of helplessness is the worst.

Take as good care of yourself as you can, give yourself permission to ask for help when you must, and above all, remind yourself that you are doing the best you can with a bad situation. One of the worst parts of the first year for me was contrasting what I had been taught to think of success with where I found myself with this condition. It can be especially hard if family members urge you to conform more rigidly to our society's expectations when you know that it is physically impossible for you.

You hang in there -- you just haven't found a treatment that works for you. In my case, it was literally dozens of things that improved my QOL. Some I've been able to let go of, and others I will probably need to do forever. What helps and harms me also shifts, sometimes unpredictably. I've learned to be very empirical, and go off and on things several times to ensure their helpfulness isn't coincidence. Especially at the start of the illness, I would often go supplement 'cold turkey' for a day or two and then re-add supplements to ensure they were still performing the right jobs. Our bodies in particular are super-sensitive, and sometimes they need more/less of sometime, or to eliminate something, or to add something new.

As someone (help me out guys) said, in the end, feeling better isn't the result of one big change -- it's the result of many things that you may find helpful that increase your overall QOL.

Feel free to PM me if you have any specific questions about Mayo.

-J

 

[Never Give Up]

I think the value of the Mayo Clinic is if you have something other than, or in addition to ME/CFS that has not yet been diagnosed. My son's cardiologist told me that the Minnesota location is the only one worth going to. Apparently they have the only program where people with hard to define illnesses can get a big team of experts to try to figure out what is wrong with them. They do not take ME/CFS seriously, but they might find some other hard to diagnose problem.

 

[caledonia]

It's ok to take a vacation from trying to cure yourself.

My suggestion would be to make sure you're paying into short term and long term disability, just in case. If you can buy a private policy, not from the company you work for, so much the better.

The one from your company is under ERISA (federal law) and it's common to get denied. However, the Department of Labor looking at making some changes which would go a long way towards making sure these denials don't happen, so if ERISA is all you can do, go for it.

 

[Jeckylberry]

@littlebird6180 I'm pretty sure I can say we feel your pain. It's horrible to have something they can't diagnose or treat adequately. You always feel like there is another fence to cross, another door that is around here somewhere - a secret passage, a loose brick... I think after the first flurry of trying to get answers from all sorts of places most of us settle on a decent GP and a few specialists who believe us and who are willing to try things as they surface. Eventually expensive inquiries lose their appeal. We have to settle in for the long haul which means at some point we all, I think, reach a realisation that all this searching is not getting to the destination faster. What you are experiencing sounds like a triple increase in stress: 1. Your existing job and family life is disrupted, 2. Your new symptoms and 3. All the new appointments with their demands on time and headspace. It sounds like it's all wearing you down but you can and will get control of it. One of the most important lessons I've learned from people on this forum is that it is a tough haul but that the best thing I can do is learn about things myself so I can be informed and not bullied or tossed around by specialists who don't know as much about it as those suffering from it. One of the reasons to get savvy is a practical one in that it saves time, effort and money. They see you for a brief moment and forget about you for months whereas you are with you 24/7 so you are the expert no matter what they learnt at school.

Cooling down is not giving up. It is working smarter, not harder.

Hugs.

 

[Mary]

@littlebird6180 - I would not go near the Mayo Clinic. Their website states that the most effective treatment for CFS is graded exercise and psychological counseling (!) - see http://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/basics/treatment/con-20022009 They are completely out of line.

People with CFS/ME can make progress, but it seems to take a lot of experimentation and reading and reading and more reading, seeing what helps other people, trying it yourself and so on. It seems that various doctors have various pieces of the puzzle, but I think it's ultimately up to us to educate ourselves, and we in turn educate our doctors.

Is going out on disability a possibility for you? If so, I would seriously consider it. I worked and worked until I could work no more, and then it seemed like I had been running a car (my body) into the ground, and it would have been smarter to quit sooner. It's not giving up to quit work when possible - it's often the sanest thing to do, giving yourself a breather and a chance to start work on healing.

 

[Jeckylberry]

Anyone that says talking and exercising is the answer is not worth a second of your time. Been there. Paying to hear that is a waste of your precious resources.

 

[jimells]

Is there a point though where you have to say "hey, i've tried it all. this is just the hand i've been dealt and maybe there is no solution"?

For me, yes. I've tried most of the usual stuff and I have to say it has been mostly ineffective. Dealing with doctors just makes me sicker and I avoid them until I can barely stand, at which point I know I need to go to the ER and get a saline IV. When there is a thousand "treatments" for one illness, that's a pretty good clue that probably none of them work very well.

I hope you can find a way to get enough rest. I know it's impossible, especially when one is responsible for kids. But not resting seems to send patients down hill faster and further than anything else. Many of us live in fear of becoming permanently bedbound - that's a club no one wants to join.

 

[digital dog]

I avoid all doctors now. Learnt the hard way and believe I would be substantially better if Id never set foot in a doctors office.
That being said, people do seem to improve with certain medications/supplements. It's a shame LDN didn't work for you..didnt work for me either.
I think giving up work would be your best medicine..and time.
Sorry

 

[justy]

Hi, when you say you have been to lots of top specialists do you mean in their field or do you mean M.E/CFS specialists? I wouldn't waste my money on consultants unless I was chasing a rare or hard to diagnose disease. If it's CFS/ME you have then a top M.E/CFS specialist would be where I would go next.

I finally did this over a year ago and wish I had done it 7 years ago. Unfortuantely I have now developed, other, secondary problems that make it hard, if not impossible to treat me.

In the US there is a wide variety of top specialists in M.E - Montoya, Chia, Lerner, Klimas, etc lots of people report on their experiences with them on these boards, so you could search or ask around. I would say they each have a slightly different focus - many of them have talks available on youtube as they are all researchers as well.

 

[denmarkk]

Does anyone here think the Mayo is worth it? I'm definitely going to keep my appointment with Dr Vincent but the results seem to be hit or miss.

I never went to Mayo, but I know several people who have ME/CFS and did go. All of them said the experience with the doctors and staff was very good and they felt cared for. However, none learned anything new to help them feel better. And all ended up with a big bill. No one got a new diagnosis. Some got a few new medications to try, but no one noticed any improvement in their overall condition. My recommendation: save your time, energy and money. Your answers aren't at Mayo (or Cleveland Clinic). They are great hospitals for other things, but not ME/CFS.

 

[JaimeS]

You always feel like there is another fence to cross, another door that is around here somewhere - a secret passage, a loose brick... I think after the first flurry of trying to get answers from all sorts of places most of us settle on a decent GP and a few specialists

A loose brick, lol! I deeply identify with this post!

 

[Marky90]

I would try Rituximab at OMI if you have the money. Not much else around with the ability to cure or make one significantly better.