Pain, insomnia and suicidal thoughts
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Misfit Toy
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Here are my concerns: I live alone. The girl who had it done said you have to have help. IT takes 8 weeks to recover from. I have no family. I live alone. My mom has dementia. So, I would have to work really hard at trying to find help and or get nursing care. Not sure how that is done. I have no friends that could help me. They either all work, have CFS and are sick themselves, or don't get my illness and would NEVER help me. This is a lot to think about.
I agree, it could be great. But, there is a lot beforehand that I would need to have lined up or done. When you live alone, everything is that much harder.
I agree, it could be great. But, there is a lot beforehand that I would need to have lined up or done. When you live alone, everything is that much harder.
Even the ones who don't understand your illness will probably understand "surgery". That tends to elicit a lot of sympathy and people might be more willing to help. It also might help them in understanding how serious the underlying conditions are, to necessitate surgery.
Misfit Toy
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Valentijn, I don't have many friends. This illness has really stripped that away from me. So, that's a problem.
Nielk
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I am assuming that you have exhausted all other alternatives? I did some googling about this surgery and implant. Like you said, it is not a simple procedure but, for people who live in constant pain without any other viable options it is a God sent.
You have mentioned that you can't tolerate opiates? Have you tried Benzodiazepines?
You have mentioned that you can't tolerate opiates? Have you tried Benzodiazepines?
Misfit Toy
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I have exhausted all pain avenues. Yes, I have tried benzo's. I have all over pain. Unbearable at times. To the point of where I can't move. Here is the biggest problem. I have really no one to talk to about this. I found this out last night and have not talked to one soul about this. I have one friend that is like "do it!" Via email. But like so many know, this is not an easy one.
I had mentioned, I have low IgG and low IgA. An immunologist I see wants me to have IVIG therapy. She feels that the inflammation is coming from a shitty immune system and this therapy could take it all away. But, I am on Medicare and this treatment is not covered easily. I may have to wait a year to have it. I will have to fight Medicare or something. All of this SHIT requires you to jump through hoops and it's major energy and a lot of work. This therapy is a 6 hour day in a hospital once a week. It may help, or not. This immunologist is rough. Meaning she is not an easy one. I don't like her. But, she has found so much wrong with me that no other doctor did. Like the Celiac disease.
The pain pump, as you saw, is major. It's no joke. And for someone with CFS and a crappy immune system, it is a concern. So, I am sitting here trying to get all of this right. And, I am trying to work on top of all of this. The pain pump would not happen for a bit. I have to have the trial of it first and seen by a psychologist and have a sleep study. So, there is time.
But I just found this all out and I am trying to process it all.
I had mentioned, I have low IgG and low IgA. An immunologist I see wants me to have IVIG therapy. She feels that the inflammation is coming from a shitty immune system and this therapy could take it all away. But, I am on Medicare and this treatment is not covered easily. I may have to wait a year to have it. I will have to fight Medicare or something. All of this SHIT requires you to jump through hoops and it's major energy and a lot of work. This therapy is a 6 hour day in a hospital once a week. It may help, or not. This immunologist is rough. Meaning she is not an easy one. I don't like her. But, she has found so much wrong with me that no other doctor did. Like the Celiac disease.
The pain pump, as you saw, is major. It's no joke. And for someone with CFS and a crappy immune system, it is a concern. So, I am sitting here trying to get all of this right. And, I am trying to work on top of all of this. The pain pump would not happen for a bit. I have to have the trial of it first and seen by a psychologist and have a sleep study. So, there is time.
But I just found this all out and I am trying to process it all.
Nielk
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It is very hard from here for me to give you clear advice. What I could say is that I don't feel that you need to jump into this tomorrow. It is a great option for you to think about and just knowing that this option is a possibility is helpful.
I know and understand what you mean about getting coverage from Medicare and also about being able to run around and go for treatments.
I have had a complication recently and I can't even get myself to go to a lab for bloodwork that my doctor wants me to take - so I definitely get it.
I think that if possible at all, I would try to first relax. don't pressure yourself into making a quick decision. Maybe you can start a thread asking others if they have experience with this pain pump. You might get some useful advice from others.
I have no experience with IVIG treatment but, you might want to google this forum for it. I too am on Medicare so i know the difficulties with it but, sometimes the doctors could be our best advocates. They have experience dealing with Medicare and they also know how to go about fighting for benefits. Not all doctors are cooperative though. Is this IVIG treatment very expensive? Would you be able to afford some treatment to try it out?
I know and understand what you mean about getting coverage from Medicare and also about being able to run around and go for treatments.
I have had a complication recently and I can't even get myself to go to a lab for bloodwork that my doctor wants me to take - so I definitely get it.
I think that if possible at all, I would try to first relax. don't pressure yourself into making a quick decision. Maybe you can start a thread asking others if they have experience with this pain pump. You might get some useful advice from others.
I have no experience with IVIG treatment but, you might want to google this forum for it. I too am on Medicare so i know the difficulties with it but, sometimes the doctors could be our best advocates. They have experience dealing with Medicare and they also know how to go about fighting for benefits. Not all doctors are cooperative though. Is this IVIG treatment very expensive? Would you be able to afford some treatment to try it out?
Misfit Toy
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Nielk, yes. Thank you and you are right, I have time. The IVIG therapy is extremely expensive. Like $1500 on up per one treatment.
I agree and I am sorry you are having such difficulties yourself. It's so hard being ill, having to make big life altering decisions and having to have the energy to do all of this.
I agree and I am sorry you are having such difficulties yourself. It's so hard being ill, having to make big life altering decisions and having to have the energy to do all of this.
Misfit I used to have horrible periods that made the migraines worse, I danced when they stopped at 52. For me migraines caused a lot of grief, pain and depression. They were complex but didn't stop with the periods they got worse. I'm sure my nuero pathways were etched deeply because of all the migraines I had at a young age that weren't treated and I was taken to the ER screaming and vomiting many times. So at menopause I got botox for migraines and it was one of the best things I did for myself. Medicare will pay for botox for migraines, your copay isn't cheap but depending on the hospital or clinic it varies. You must get approval first. Going thru a migraine means no coping skills for other problems so in my case it was imperative to eliminate. I still have body pain but along with a migraine I didn't have a chance. Hoping you feel better.
sianrecovery
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Am a bit messed up in terms of cognition MT, but wondered how many opiates you had tried to know you couldn't tolerate them? For instance, my father had a genuine allergic reaction to pethidine (turned bright pink and started hallucinating, hard to miss) but was fine on oramorph, stepping the dose up slowly. You've tried gabapentin etc? The implant seems like an option that will be frightening for you to contemplate, whatever the reality. Is there no other oral med that can be tried first? Are your docs specialised in pain control?
And I know just what you mean about ending it all - I often get that - I live in this body 'just for today' - only bearable way.
Have you tried the other anti-inflammatory stuff in terms of diet, methylation etc etc?
Big hug xxxx
And I know just what you mean about ending it all - I often get that - I live in this body 'just for today' - only bearable way.
Have you tried the other anti-inflammatory stuff in terms of diet, methylation etc etc?
Big hug xxxx
vamah
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I'm wondering if you can find a patient advocate who can help you get nursing care after the operation. I know these people exist in hospitals (usually social workers, I think), so I wonder if the hospital where you would have surgery could put you in contact with someone who can help you deal with those sorts of details. I have known relatives who were already hospitalized who received this kind of help. Don't know how you would go about finding prior to being hospitalized, though.
caledonia
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You're magnifying this into a huge thing. ALL MEN won't like me cause of the pump. Your therapist should be helping you learn how to identify and stop this kind of anxious thinking.
The truth is, some men might not like it, but screw those superficial idiots. The right men will be fine with it. Heck they might even think it's sexy, who knows?
Misfit Toy
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sianrecovery, I had endometriosis for 8 years starting at age 23, followed by IC and Vulvodynia and now all the rest. Here is what I have tried; neurontin, Celexa, Elavil, SOMA, Flexoril, Darvocet (best drug ever and they took it off market.) Dilaudid, morphine, percocet, oxycodone or oxycontin, Ultram, Fentanyl patches, 800 mg of Ibuprofen, Voltaren, Imitrex for migraines, Codeine, which I am highly allergic too. Vomitting, etc. Also, valium, ativan, etc.
This doctor is a pain specialist. He specializes in chronic pain. Everyone in his office is in MAJOR trauma. I have no back injury; I just have everything else under the sun due to this messed up immune system and heavy inflammation.
So, all opiates make me itch. All of them. So, then I can't sleep on them. Fentanyl dopes me up so good and it's a patch. You can't cut the dose in half and it's on for 3 days. Can't sleep on it from whatever the hell it does to my brain.
Methylation protocol makes it worse. SO MUCH WORSE. That says a lot. However, I can't stick it out with this kind of pain. I may need it, but if you are worse and can't sleep on it because it jazzes you up, why keep it up??
I take magnesium, I bathe in epsom salts, I LIVE trying to rid myself of pain. It takes up my whole day. Baths, eating, vitamins, supplements, etc. I get "nowhere" by doing these treatments. Gluten free, dairy free. I mean, what more can I do....eat bark? Joke.
With the pain pump I will bypass itching, nausea, any kind of reaction because it will go from spinal cord to brain.
caledonia, you are right. And, at the end of the day...I can't date now because of pain and illness so I will trade one for the other. I really don't even want a BF right now anyway. Maybe I would then. But, with the way I feel; forget it. If I could just sleep better and get out more, I think a man might not be even that important to me. I'd be happy to live.
PNR2008 the migraine is only a fraction of my situation and really only comes with my period. But, the other pain is all of the time. So, if I just had a migraine, which would still be horrible, I would be happy. The pain specialist wants to get all of the pain to be gone or less. Migraines are also helped by pain pump, as the doctor installed it for a man who had just migraines. His migraines are now gone. Believe me, I am not discounting migraines. I am just saying, that's not my main problem. All over body pain is what is consuming me, but especially in the ribs, which causes me to not breathe.
The doctor I go to is a pain specialist. He is one of the top doc's in the Philadelphia location.
@vamah-tomorrow I start looking into what you said. I am looking into it because I am sick of this fear. I need help with surgery or anything and my mom is always like, "Who will take care of you? How will you do this?" I can't avoid surgery just because I have no significant other or family. I need help.
Also, I need to clarify something; all of my friends, the ones that I have...have children, have problems, etc. They don't have time to take me in or take care of me. They have full lives. I can't ask them to take care of me when they have kids with autism or aspergers or a father in law that lives with them. It's too much on them.
This doctor is a pain specialist. He specializes in chronic pain. Everyone in his office is in MAJOR trauma. I have no back injury; I just have everything else under the sun due to this messed up immune system and heavy inflammation.
So, all opiates make me itch. All of them. So, then I can't sleep on them. Fentanyl dopes me up so good and it's a patch. You can't cut the dose in half and it's on for 3 days. Can't sleep on it from whatever the hell it does to my brain.
Methylation protocol makes it worse. SO MUCH WORSE. That says a lot. However, I can't stick it out with this kind of pain. I may need it, but if you are worse and can't sleep on it because it jazzes you up, why keep it up??
I take magnesium, I bathe in epsom salts, I LIVE trying to rid myself of pain. It takes up my whole day. Baths, eating, vitamins, supplements, etc. I get "nowhere" by doing these treatments. Gluten free, dairy free. I mean, what more can I do....eat bark? Joke.
With the pain pump I will bypass itching, nausea, any kind of reaction because it will go from spinal cord to brain.
caledonia, you are right. And, at the end of the day...I can't date now because of pain and illness so I will trade one for the other. I really don't even want a BF right now anyway. Maybe I would then. But, with the way I feel; forget it. If I could just sleep better and get out more, I think a man might not be even that important to me. I'd be happy to live.
PNR2008 the migraine is only a fraction of my situation and really only comes with my period. But, the other pain is all of the time. So, if I just had a migraine, which would still be horrible, I would be happy. The pain specialist wants to get all of the pain to be gone or less. Migraines are also helped by pain pump, as the doctor installed it for a man who had just migraines. His migraines are now gone. Believe me, I am not discounting migraines. I am just saying, that's not my main problem. All over body pain is what is consuming me, but especially in the ribs, which causes me to not breathe.
The doctor I go to is a pain specialist. He is one of the top doc's in the Philadelphia location.
@vamah-tomorrow I start looking into what you said. I am looking into it because I am sick of this fear. I need help with surgery or anything and my mom is always like, "Who will take care of you? How will you do this?" I can't avoid surgery just because I have no significant other or family. I need help.
Also, I need to clarify something; all of my friends, the ones that I have...have children, have problems, etc. They don't have time to take me in or take care of me. They have full lives. I can't ask them to take care of me when they have kids with autism or aspergers or a father in law that lives with them. It's too much on them.
They'd only have to care for you for a short period of time, really. 
I do know where you're coming from, not wanting to ask anybody, but if these are the sort of folk who do care for ailing or ill family already, they'll have some understanding of care needs.
There's an old saying, which goes along the lines of; "If you need help, ask a busy person."
Because they're the sort of people who will help - whether they have the time or not, they will find it.
My partner has a huge great Frankenstien-like scar running down his entire stomach.
I love it - if it wasn't for that scar, he would be dead.
I do know where you're coming from, not wanting to ask anybody, but if these are the sort of folk who do care for ailing or ill family already, they'll have some understanding of care needs.
There's an old saying, which goes along the lines of; "If you need help, ask a busy person."
Because they're the sort of people who will help - whether they have the time or not, they will find it.
My partner has a huge great Frankenstien-like scar running down his entire stomach.
I love it
- if it wasn't for that scar, he would be dead.
Nielk
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Misfit Toy - I am not sure about this but, doesn't Medicare provide visiting nurse help when prescribed by doctor? I don't think that the hospital can release you on your own without any help if you are bed bound and unable to care for yourself.
Misfit Toy
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Nielk, I am going to my primary CFS doc today to ask him this. He told me once he would help me if I ever needed surgery with help from nursing, so I am going to look into it today. Trying to line my ducks up. I was reading this forum about what you need to know if you have it and one thing is you need someone to spend the night the first night. So, I have to find out about that. Ugh.
This is why I hate that I was born so late in my parents life. One parent dead, one suffering with dementia, one sibling died and the other sibling is horrid. Both siblings much older than me. Wasn't left with much of a family. I have taken care of my parents in some ways more than they took care of me and for a much longer time. I know I am not the only one who doesn't have much for a family. It sucks.
This is why I hate that I was born so late in my parents life. One parent dead, one suffering with dementia, one sibling died and the other sibling is horrid. Both siblings much older than me. Wasn't left with much of a family. I have taken care of my parents in some ways more than they took care of me and for a much longer time. I know I am not the only one who doesn't have much for a family. It sucks.
Nielk
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Lou
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Hi Misfit Toy,
Seems some men lose the ability cry when it's appropriate, and sadly I think I'm one of them. But when I read your story it's what I feel inside, just want to lay down and weep. I wish there was something I could say or do to help you.
I think you are one tough, strong and fantastic human being to still be among us with all you've suffered. I hope you will remain strong and that life waits for you just around the corner.
Seems some men lose the ability cry when it's appropriate, and sadly I think I'm one of them. But when I read your story it's what I feel inside, just want to lay down and weep. I wish there was something I could say or do to help you.
I think you are one tough, strong and fantastic human being to still be among us with all you've suffered. I hope you will remain strong and that life waits for you just around the corner.