Doctor visit blues…don’t know what to do

[Hope_eternal]

Your situation is really tough, please take care of yourself. Sending you some good energy.

Thank you 🙏 I appreciate that.

You said, that your son has CFS and sleep problems, and that he takes Prozac and Wellbutrin. This doesn't make sense to me. Prozac and Wellbutrin are one of the most stimulating antidepressants out there.

That’s very interesting and I knew that about them but didn’t pause to think that they may be contributing. I appreciate you bringing it to my attention. What a puzzle. I will send a note to his doctor on Monday to look into fluvoxamine. Thank you

 

[ilivewithcfs]

It doesn't even have to be fluvoxamine, there are other drugs out there, that are neutral/slightly sedating and antiinflammatory. I just think it's worth discussing with your doctor whether it makes sense to give stimulating drugs to a CFS patient with sleep problems.
Fluvoxamine can be too sedating for some people. For me it was perfect, it fixed my sleep and gave me more energy during the day, but we are all different.

 

[Hope_eternal]

It doesn't even have to be fluvoxamine, there are other drugs out there, that are neutral/slightly sedating and antiinflammatory. I just think it's worth discussing with your doctor whether it makes sense to give stimulating drugs to a CFS patient with sleep problems.
Fluvoxamine can be too sedating for some people. For me it was perfect, it fixed my sleep and gave me more energy during the day, but we are all different.

It’s definitely worth bringing up. There are so many variables to figuring out what works. I wish there was a doctor that reviewed records and put the pieces together for you and found doctors for you based on their findings. Is there such a thing?

I will ask about the below options. Thanks so much!

that are neutral/slightly sedating and antiinflammatory.

 

[ilivewithcfs]

I wish there was a doctor that reviewed records and put the pieces together for you and found doctors for you based on their findings. Is there such a thing?

Theoretically, GP is supposed to do that. He/she should analyse the symptoms and direct you to appropriate doctors.
In reality things are different. I've been to so many doctors,and I haven't found anybody,who even knows what ME/CFS is, let alone knows how to treat it. I'm completely on my own.

 

[hapl808]

I feel like I’m constantly in a stressed state trying to get answers. Not knowing what to do. Trying so very hard to get answers but I’m not getting anywhere. I’m trying to stay strong but it’s wearing me down. I’m back to working full time and can’t keep up with all the things I need to do for 2 chronic illness. I have a 2 page list of follows ups I haven’t gotten to. — more Tests ordering, scheduling labs, sleep machine ordering, vitamin ordering, reaching out to doctors, I’m so behind 😭. I’m going to do as much as I can this weekend but I’m 2 weeks behind on stuff and most of that is because doctors don’t get back to me and I’m so busy I can’t follow-up as often, it’s so exhausting.

Keep in mind you're doing a great job despite what it feels like. It's an impossible task, but many (most?) of us have navigated this for years or decades with no one as conscientious as you and without the benefit of modern online forums that have really only existed to this degree in maybe the last 10 years (or less).

Try not to burn out or be too hard on yourself. It's a marathon, and sadly you have to adjust your goals to realistic outcomes and trying to just make tomorrow better than today, rather than 'on the the road to recovery' or some such thing.

I pushed myself way too hard over the years, convinced that with enough studying or research or intelligence or doctors or specialists that I would, eventually, cure myself. Instead, I just made myself infinitely worse chasing improvement.

 

[maddietod]

Theoretically, GP is supposed to do that. He/she should analyse the symptoms and direct you to appropriate doctors.
In reality things are different. I've been to so many doctors,and I haven't found anybody,who even knows what ME/CFS is, let alone knows how to treat it. I'm completely on my own.

I've been thinking about this. GPs have been forced into a corporate/efficient model. I've tried 3 in the past 5 years, and all have kept the focus on what standard bloodwork uncovers. Cholesterol etc. They will give referrals, but the only people in their networks are what you would expect - cardiologists, sleep doctors, etc.

These referred doctors seem to have a lot more time to spend with me, but they're still in the regular medical model. If the answers to our problems were inside the medical box, we'd all be doing better already. I agree that we're on our own.

I keep daily notes about what I eat, how I sleep, if I get out of the house, etc. Every once in a while I notice a pattern that gives me a new idea of something to try. All of my gains with this illness have come from this; none have come from doctors.

 

[Hope_eternal]

Keep in mind you're doing a great job despite what it feels like. It's an impossible task, but many (most?) of us have navigated this for years or decades with no one as conscientious as you and without the benefit of modern online forums that have really only existed to this degree in maybe the last 10 years (or less).

Try not to burn out or be too hard on yourself. It's a marathon, and sadly you have to adjust your goals to realistic outcomes and trying to just make tomorrow better than today, rather than 'on the the road to recovery' or some such thing.

I pushed myself way too hard over the years, convinced that with enough studying or research or intelligence or doctors or specialists that I would, eventually, cure myself. Instead, I just made myself infinitely worse chasing improvement.

Thank you for this! I do get wrapped up in feeling the need to figure this all out. I can’t seem to stop myself for feeling responsible to figure it out or at least finding someone or something to help him, it gnaws at me every day. I hate that he’s missing out on so much. That what’s supposed to be the best time of his life is now spent all alone isolated with this illness. It hurts my heart for him, for everyone suffering from this. I do need to find a way to find balance because he needs me and I can’t burn out. It’s not an option. So I’m trying my best to keep calm and not over stress. It’s difficult when you love someone so much and want so much to make it better. I appreciate your note. You’re right, about just taking it day by day.


It sounds like you have put so much effort and hard work into your recovery. I’m so sorry it made things worse ultimately for you. It shouldn’t be that way. It doesn’t seem right or fair.

pushed myself way too hard over the years, convinced that with enough studying or research or intelligence or doctors or specialists that I would, eventually, cure myself. Instead, I just made myself infinitely worse chasing improvement.

Thank you for taking the time to help me see me clearly. I truly appreciate your message🙏

 

[Hope_eternal]

I've been thinking about this. GPs have been forced into a corporate/efficient model. I've tried 3 in the past 5 years, and all have kept the focus on what standard bloodwork uncovers. Cholesterol etc. They will give referrals, but the only people in their networks are what you would expect - cardiologists, sleep doctors, etc.

These referred doctors seem to have a lot more time to spend with me, but they're still in the regular medical model. If the answers to our problems were inside the medical box, we'd all be doing better already. I agree that we're on our own.

I keep daily notes about what I eat, how I sleep, if I get out of the house, etc. Every once in a while I notice a pattern that gives me a new idea of something to try. All of my gains with this illness have come from this; none have come from doctors.

I feel the same about GPs. I have one that I might try again. He was the one that thought outside the box and put my son on the antiviral that improved him slightly. But yes for now it doesn’t seem like the medical field has any concrete answers. Sadly. And yes it appears we are very much on our own trying to figure it out. That really great you have been able to make progress by tracking. I hope we come to that place some day soon where we are getting ideas that help give him some gains. Knowing you and others are figuring out things that help you gives me hope!

 

[wabi-sabi]

I feel like this is too complicated. I’m so lost. I can’t get any answers. It’s more than difficult to get answers on if changing his Crohn’s medication is safe or not in the condition he is in. He’s due for his Crohn’s medication next week and still his gastro specialist hasn’t called me to discuss. I feel like I’m constantly in a stressed state trying to get answers. Not knowing what to do. Trying so very hard to get answers but I’m not getting anywhere. I’m trying to stay strong but it’s wearing me down.

I really feel for you. You are trying so hard to do everything right now and it's just not possible. After a point you just get so stressed and overwhelmed you can't make any decisions and everything gets too hard.

My advice, for what it's worth, is to try the new Crohn's medication and then just let everything else go for a while. I understand it feels impossible to just step back for a minute, but you need to let yourself be in a calmer state, for your son's sake and for yours. I don't mean to come across as lecturing you. I'm just worried about how frantic you are feeling and how much that's exhausting you.

As @hapl808 says, this disease is a marathon not a sprint. Resting up is important to finish the race. The hard truth about healthcare is that it works (mostly) in probabilities, not sure things. The certain answers you seek don't exist, but you can sure torment yourself trying to find them. This is one of those times when you have to make a decision with imperfect information. I can see how badly you want to make the right decision and help your son and you're really doing a good job. But there is no perfect information here, so you have to let that go for the sake of our health and sanity.

When you're exhausted it feels like you need to do everything at once, and you just don't. You get too overwhelmed to prioritize. You don't have to think about the antidepressant right now, you don't have to think about the sleep study right now, you don't have to call Dr. Rowe right now, you can put the provigil right out of mind. Just focus on getting the new Crohn's med and let that settle. Once you try that and see your son improve (or nothing happens at all) then you can regroup. I have the feeling that medication is what's preying on your mind the most and also the feeling that has the most potential to be helpful of everything you have mentioned to us.

OK, end of lecture. Take care. I'm thinking of you.

 

[Hope_eternal]

I really feel for you. You are trying so hard to do everything right now and it's just not possible. After a point you just get so stressed and overwhelmed you can't make any decisions and everything gets too hard.

My advice, for what it's worth, is to try the new Crohn's medication and then just let everything else go for a while. I understand it feels impossible to just step back for a minute, but you need to let yourself be in a calmer state, for your son's sake and for yours. I don't mean to come across as lecturing you. I'm just worried about how frantic you are feeling and how much that's exhausting you.

As @hapl808 says, this disease is a marathon not a sprint. Resting up is important to finish the race. The hard truth about healthcare is that it works (mostly) in probabilities, not sure things. The certain answers you seek don't exist, but you can sure torment yourself trying to find them. This is one of those times when you have to make a decision with imperfect information. I can see how badly you want to make the right decision and help your son and you're really doing a good job. But there is no perfect information here, so you have to let that go for the sake of our health and sanity.

When you're exhausted it feels like you need to do everything at once, and you just don't. You get too overwhelmed to prioritize. You don't have to think about the antidepressant right now, you don't have to think about the sleep study right now, you don't have to call Dr. Rowe right now, you can put the provigil right out of mind. Just focus on getting the new Crohn's med and let that settle. Once you try that and see your son improve (or nothing happens at all) then you can regroup. I have the feeling that medication is what's preying on your mind the most and also the feeling that has the most potential to be helpful of everything you have mentioned to us.

OK, end of lecture. Take care. I'm thinking of you.

Thank you for your note. I’m trying to be brave.. I don’t feel sure about giving him high doses of a biologic medication that suppresses his immune system every 4 weeks for the next 3 months. It scares me to not have any data on it. I’m not comfortable moving forward when I feel so u sure and afraid about it possibly affecting negatively. It’s too much of a risk in my opinion. I appreciate your advice sand your thoughts about it. I understand where you’re coming from, it quite possibly could turn out to be a good thing for him. I don’t know. His first infusion is scheduled for Tues. I still don’t know what we are going to do. I pray I make the right decision for him.

 

[wabi-sabi]

I’m trying to be brave..

You are, you are!

Sorry if I've overstepped on too much advice. I'm quite an opinionated person.

But try to give yourself some rest and grace? Ooh, now I'm sliding into lecture mode again.

Hugs, Wabi

 

[Hope_eternal]

You are, you are!

Sorry if I've overstepped on too much advice. I'm quite an opinionated person.

But try to give yourself some rest and grace? Ooh, now I'm sliding into lecture mode again.

Hugs, Wabi

❤️

 

[lenora]

@Hope_eternal.....May I suggest that you ask your son what he wants to do? Like Wabi, I'm concerned that you are leaving yourself depleted.

You're just a human being doing your very best. Do you have someone else you can openly talk to? Anyone...who can listen and perhaps have another view of this entire matter.

As a person who has had this for a good part of my life, badly suffered for 40-45 years now, I can only tell you that I was burned out last year that I simply had to take time off from tests, doctors....anything that reminded me of this illness. Your son may be simply exhausted from getting dressed, doctor's visits, waiting, etc. It happens and it's beyond exhaustion for both of you.

We'll wait for your decision on Tuesday and I'm sorry that everything seems to be falling on your shoulders.

I know your son is terribly ill and it must be soul searing frightening. I'm sorry that no answers seems to be the mode of the moment. Bless both of you. Yours, Lenora

 

[Hope_eternal]

May I suggest that you ask your son what he wants to do? Like Wabi, I'm concerned that you are leaving yourself depleted.

I have asked him but he says he doesn’t know. He says he wouldn’t be able to do any of this without me and if it was up to him he wouldn’t have the energy to do anything.

Your son may be simply exhausted from getting dressed, doctor's visits, waiting, etc. It happens and it's beyond exhaustion for both of you.

I try and do my best not to have him go to too many appts. Since he was diagnosed in Oct this was the first appt he had to leave the house for. A lot of his appts have been FaceTime and he hasn’t had to participate. The doctors talk to me. The only reason why we went to the appt last week because the doctor couldn’t treat him unless we came in person and I thought it would be worth it because I thought he was an expert. Lesson learned.

know your son is terribly ill and it must be soul searing frightening. I'm sorry that no answers seems to be the mode of the moment. Bless both of you.

It’s beyond anything I can describe. A deep agonizing primal pain deep in my soul. Thank you for your note and kind words ❤️

 

[Hope_eternal]

You're just a human being doing your very best. Do you have someone else you can openly talk to? Anyone...who can listen and perhaps have another view of this entire matter.

Not really. I talk to a therapist once a week. It helps some.

 

[maddietod]

I have asked him but he says he doesn’t know. He says he wouldn’t be able to do any of this without me and if it was up to him he wouldn’t have the energy to do anything.

This struck me. I don't know if this will help how you think about this, but over time we learn the gradations of not having any energy. Your son is probably not good at this yet. Compared to his old life, he can't do anything, and that is hugely right up in his face all of the time. It will be useful to both of you when he's figured out the energy cost of his activities. This also switches thinking from 'I can't do anything' to 'how do I manage my energy so I can do X?'

There are also component parts of energy and energy drains that most people don't think about. These are individual. One huge one for me is I'm flattened by fast action and fast talkers on a screen. I watch short informational stuff on my laptop, and I stop when my brain does this thing...also individual...and switch to reading. I can tell how crashy I am by the complexity of books I can handle. If I was a young child, I would be switching between picture books and chapter books.

I'm just offering this as information, not as a plan of action. I agree with everybody who is reminding you that this is early days, it's all overwhelming, and you're probably more exhausted than you even realize. The most important things, to my mind, are the Crohn's medication and your son not crashing. This is already a lot, and I think you're amazing for handling this for somebody else, on top of your own full life.

 

[Hope_eternal]

This struck me. I don't know if this will help how you think about this, but over time we learn the gradations of not having any energy. Your son is probably not good at this yet. Compared to his old life, he can't do anything, and that is hugely right up in his face all of the time. It will be useful to both of you when he's figured out the energy cost of his activities. This also switches thinking from 'I can't do anything' to 'how do I manage my energy so I can do X?'

There are also component parts of energy and energy drains that most people don't think about. These are individual. One huge one for me is I'm flattened by fast action and fast talkers on a screen. I watch short informational stuff on my laptop, and I stop when my brain does this thing...also individual...and switch to reading. I can tell how crashy I am by the complexity of books I can handle. If I was a young child, I would be switching between picture books and chapter books.

I'm just offering this as information, not as a plan of action. I agree with everybody who is reminding you that this is early days, it's all overwhelming, and you're probably more exhausted than you even realize. The most important things, to my mind, are the Crohn's medication and your son not crashing. This is already a lot, and I think you're amazing for handling this for somebody else, on top of your own full life.

Thank you. I’ve had a really tough day today so I’m going to keep this short. I appreciate your thoughts and your kind words. When I have the energy talk with him he gets irritated and defensive so I don’t know what to do. I don’t want to stress him. I ended up canceling the new drug. I feel sad. I don’t know if it was the right decision but it’s the only thing that felt safe right now. I’m scared about hurting him further. Going to need to stop typing because I can’t see through my tears. Thank you again

 

[hapl808]

When I have the energy talk with him he gets irritated and defensive so I don’t know what to do.

Also it's difficult and he may be confused, because often in moderate-severe MECFS you say severely impacted executive function. I had this for years (decades?) before understanding it. You see it in other things like Parkinson's or MS (or ADHD), but my opinion is that it manifests differently in MECFS. So we find it not only difficult to make good decisions, but almost actively painful to think about such things and stretch our minds in those directions. So our defense mechanism is to retreat and lash out.

Unfortunately, I have no solution to that. I have the decades of experience now and understanding of what's happening, and the discipline and mental crutches to push myself to think about things methodically - but I have to do it quickly, and I know I will still crash for days from the cognitive effort. Quick decisions with a subsequent crash (and further decline) is not how to make good decisions, and yet it's all I have so far.

If thinking about things 'only' caused pain, I would be able to deal better. The tough part is there's an added calculation to each calculation - in other words, I have to think about my decision (drugs treatment, life decision) and also think about how bad the crash will be and also calculate whether the decision is even worth the crash.

 

[Hope_eternal]

So our defense mechanism is to retreat and lash out.

I can understand this. I don’t get upset with him. It just makes me feel sad because I know he’s frustrated at his circumstances and he’s given up so much so thinking he may eventually not even be able to do the one last thing that makes him feel happy has got to be frightening, Ug I get a knot in my throat just thinking of it myself. Before this he was quite witty full of laughs, loved to joke and take jabs at you. He is quite smart too. He was studying chemistry in school. Seeing him like this is difficult. I can only imagine how he must be feeling. Here I go again, tears flowing. Today’s tough. Thanks for your message. I do get what you are saying, I pray this gets figured out soon ❤️‍🩹

 

[kushami]

I haven’t had any personal contact with Dr Rowe, but I’ve watched many of his presentations and read his research papers. He seems lovely. Caring, gentle sense of humour, and collaborates with other very smart researchers.