Chronic pain

[Walker]

Hi all,
This is my main issue that really gets me down when I think that I can't live out a long life and just die naturally. I have no intention of killing myself today or tomorrow or anything, I just feel like at some point down the road I'm going to reach a point where the pain will be too much to handle and I won't be able to take it any more. I've got a chronic pain disorder (Ehlers Danlos Syndrome) and then the breakdown of the symptoms of that over the years. My mother overdosed when she was 50, much because of the pain associated with this disorder. I'm less than a decade from that -- how much longer do ~I~ have? She had every pain med in the book tossed at her by the time she was my age too, before they were outlawed like we were drug seeking losers.
So what about ya'll? Who's rowing this boat with me?

 

[SillyOldBear]

Hi avalanche. I had never heard of Ehlers Danlos until now. It sounds absolutely wretched. I am really sorry you are going through it and that you had to watch your mom suffer with it. And I am totally fed up with a medical system that is so stingy with pain meds that people wind up living in perpetual pain. Just because some morons abuse the med, those who really need them wind up suffering. I will be 65 in just a bit and seems to be developing new aches and pains on a regular basis. And I struggle with it. Don't want it getting any worse. But what I am going through is nothing compared to what you are enduring. Just want you to know that I am rooting for you. I hope they come up with a new treatment for this. And, especially that they lighten up on the restrictions on pain meds. Be kind to yourself. You deserve it.

 

[Walker]

The medical system IS messed up, Mr. Bear. The sins of the few and all, you know.
I cannot even imagine being 65 years old. Seriously. That's.. just unfathomable to me. The thought just can't come into my head. I can't let myself live that long. I'm already so messed up.
Nice profile pic, SOB. Is that a double entendre?

 

[Walker]

ha. And I see I mis-typed my "Ms" as "Mr" Niiiice. Good job. :eek:

 

[Sad at the beach]

I understand what you are going through. I have RA, Fibromlyalgia, and Kyphosis, along with kidney cancer. I can't take a lot of drugs, because it will basically kill my one kidney I have left, that also has a mass on it. Becuase people don't see a disability, they tell me to get over it and move on. That makes me so mad. I would like to think I would not take my life, but the pain, and being alone, makes me want to end it. I have ran out of options with meds, and what I can take doesn't work.

I sure hope they can find some medicine to help ease some of the pain. When the pain gets so bad, it effects the mind. I try to numb myself with getting lost in my music, and that helps a little. Do you have anything that takes the edge off for you?

If I ride my exercise bike it helps the leg pain, but does nothing for my spine/neck. Any ideas?

Lets stay in touch maybe we can help each other some how.

 

[JmpMster]

@avalanchefan95 Pain management is difficult, particularly using your regular Doctors. Getting an actual pain management specialist made a huge difference to my quality of life. If you google pain management specialists in your area they will have access to the type of meds that are needed to adequately control pain and so long as you follow the rules (like mine does both scheduled and random urinalysis) you cant get the meds you need and that regular doctors will not prescribe out of fear of being labelled a drug dealer by the DEA.

@Sad at the beach Totally understand the issue with meds. While because of them I am still alive and not bedridden, i also had kidney failure caused by them and an enlarged liver. There is definitely a balance but it is why I ended up on fentanyl patches and morphine- because for all the bad parts of them, they are far easier on the other organs than most of the neuropathic pain control meds often used. The trick is to find doctors that will treat pain management as an actual critical part of health care since when not treating it quality of life is so bad that I really did not care about the rest anyway. I hope you are able to find somebody that will look at the whole person concept and treat all of the issues as well.

 

[Walker]

Yeah I hear you about pain management. I tried to get into a clinic here & they won't take my insurance & there's an 18 month waiting list. My town is full of drug seekers honestly. CO as a whole I'd full of them these days actually. The marijuana laws really brought out the junkies. Not that the pot heads are bad but they brought along people with worse drug usage. We've got terrible drug issues here now making it especially difficult to get meds .

 

[alone In chains]

Hi Avalanchfan95. I also haven't heard of that illness, can u explain it a bit for me. It must have been really rough to watch your mom go through it. Then the unfortunate over medication from her dr. I'm very sad u had to go through all that. And yes the medical system has gone down the toilet. When I was diagnosed with fibromialga I was told yes it's painful u will have good days and bad, don't eat processed foods and that was it have a good day. So I had to find out what it was and what to do for myself. The pain got so bad I went back to my Dr. For some help and he told me that it was such a new disease that they didnt know how much of it was in my head so i started to self medicate myself and became addicted to pain meds. That was when I was about 32. But I'd been suffering with pain since I was a small child. All the Dr. Said it was growing pains. Ya right how many 10 year Olds do u know that r so tired and sore go to bed after school and only get up to eat. Well now at this point I'm labeled a drug addict and basically by now have slipped through medical cracks for years. To make a long story short and not get into my whole addiction background I am now under the care of a family physician and am getting a low does pain med despensed weekley. But even with the pain med I know what you mean by not knowing if your going to make it. I wake up some days in such crippling pain I can't even breath and like you it scares the crap out me. What's it going to look like when in 60 as well I didn't have any children and that scares me most. Not that I would expect them to look after me but just the fact of being alone with no family. I know how your suffering and wanted to let you know that your not alone.

 

[Jp1985]

I feel you. I too, have a serious chronic pain problem and completely inadequate pain medication. I know exactly how it feels when doctors treat you like a junkie and when you go pick up your meds from pharmacy, they look at you like you have drug problem. I know too, that there is a breaking point, when your mind or body have had enough of the pain and you cannot take it anymore. I am in fifth year of this hell and feel like i don't have many more left. I'm sorry you have had so bad luck too, serious chronic pain is something I wouldn't want anyone in this world to experience. If you want to talk to someone who is in the same boat, I will listen and try to help in anyway I can.

 

[SillyOldBear]

@avalanchefan95 No problem with the Mr, instead of Ms. This old she bear is used to it. I really never thought I would live to 65 either. But I have and need to make the best of it. I have a number of friends who are in their 90's. They always rejoice at still being 'above ground'. My avatar is named Rudi. He is my favorite bear. They are my passion. A bit odd for a 65 year old, but then, I am odd.
I hope you will keep trying to find a pain clinic to help your. There are many who do swear by marijuana as a pain reducer. But it is a very complicated drug and since it is not legal in most places it is a taboo topic on SF. It would be something you would need to consult a doctor about. Hope you will find some relief soon.

 

[Walker]

MJ is taboo here huh? LOL I love in Colorado, we're all about it here. I work in the prisons though so I'm out if luck on that. I do think its effective!

 

[SillyOldBear]

I understand. I am in Washington State. But it is still illegal in most places, so it remains taboo on this site.

 

[DrownedFishOnFire]

Just seeing this thread for the first time. Wow had to google the syndrome @avalanchefan95 . Just wow that kind of pain for you, feel bad and do hope you find cure for it. Just Amazing how the human body can fail us in many ways.

I am now thinking out of the box (I'm desperate at this point to have the pain just go away) the doctors are really useless and my knee has decided to be evil the last 4 days wanting to dislocate itself from my leg after ive had days with headache. Pain is unbearable and I'm allergic to NSAIDS so whatever medication doctors can prescribe me doesn't work well. Tylenol isn't cutting it anymore and I refuse to ask for more stronger stuff as I don't want to damage my liver/kidneys so am really giving Dr. Jasons Fung idea on extended fasting a serious thought if it helps with the horrible pains, ill let you know if its even something worth a try if I really followed through.

 

[Walker]

Fasting? Good luck on that. Let us know of anything that help you.
Have you tried anything related to CBD/MJ?

 

[SillyOldBear]

Tranquilizers can also help ease pain. Have you given them a try?

 

[Walker]

I take valium, muscle relaxers, vicodin and neurontin. And some other non related crap but those are probably the big ones for pain or related things, @SillyOldBear

 

[DrownedFishOnFire]

@avalanchefan95

Actually no Mjs actually makes my mental illness worse and I'm so paranoid as heck on them lol and I have addiction running in the family so the odds for me isn't that great

 

[Walker]

Paranoia is rampant on the MJ! Not for me but I hear that a lot!

 

[no1jewel]

Hi all,
This is my main issue that really gets me down when I think that I can't live out a long life and just die naturally. I have no intention of killing myself today or tomorrow or anything, I just feel like at some point down the road I'm going to reach a point where the pain will be too much to handle and I won't be able to take it any more. I've got a chronic pain disorder (Ehlers Danlos Syndrome) and then the breakdown of the symptoms of that over the years. My mother overdosed when she was 50, much because of the pain associated with this disorder. I'm less than a decade from that -- how much longer do ~I~ have? She had every pain med in the book tossed at her by the time she was my age too, before they were outlawed like we were drug seeking losers.
So what about ya'll? Who's rowing this boat with me?

hi
i live with chronic pain too very tough road to travel i have connective tissue disease which they feel is lupus i also have extreme photosensitivity which means i am practically housebound and can only use certain rooms in the house depending on how btrght it is weatherwise and wear factor 50 sunscreen at all times the last flare up caused me to have multiple strokes and i have been asking myself the dame questions so you r not alone

 

[Walker]

Thanks, @no1jewel It's at least good to know that we're not out here floating along alone, you know? We're all having the same ideas. Gotta stick together.