Reaching dead end after dead end for the last 25 years

[sk8brdkd]

i need to vent and I need prayer please. I’m frustrated beyond belief.

I was born with a medical condition. When I was in 6th grade, they started tests. Every single test back then has come up with nothing. Recently, I’ve received a full body mri and a full body blood test. Yet again, everything has come out normal and shows I don’t have anything

The pain I’m in has been getting worse n worse and has been limiting me more and more. I cannot work bc of this. I try to work 2 days a week but even that is hard. Lately, I haven’t been able to drive too well either bc of the pain.

I had been on a medication for 10 years but it stopped working. Stopped it in 2005. My doctor tried me on a few other meds but nothing worked.

So I was on nothing from 2007-beginning of 2018. My new doctor put me back on baclofen bc nothing else would work. But... I’m currently on 80mg a day and so far it’s not helping.

I’ve looked up alternatives for pain management but realized that all these alternatives were either for injuries only or for spinal injuries or back problems. Nothing for muscle pain.

Everything I’m trying, everything I’m doing, nothing is working. My pain is increasing, spreading and making life more difficult.

I’m a highly active person and try to push myself as much as possible but it’s been getting harder for me to push myself bc the pain is so bad.

 

[R. Hartono]

I pray in Jesus name may your pain be healed, Amen.

 

[anna ~ grace]

i need to vent and I need prayer please. I’m frustrated beyond belief.

I was born with a medical condition. When I was in 6th grade, they started tests. Every single test back then has come up with nothing. Recently, I’ve received a full body mri and a full body blood test. Yet again, everything has come out normal and shows I don’t have anything

The pain I’m in has been getting worse n worse and has been limiting me more and more. I cannot work bc of this. I try to work 2 days a week but even that is hard. Lately, I haven’t been able to drive too well either bc of the pain.

I had been on a medication for 10 years but it stopped working. Stopped it in 2005. My doctor tried me on a few other meds but nothing worked.

So I was on nothing from 2007-beginning of 2018. My new doctor put me back on baclofen bc nothing else would work. But... I’m currently on 80mg a day and so far it’s not helping.

I’ve looked up alternatives for pain management but realized that all these alternatives were either for injuries only or for spinal injuries or back problems. Nothing for muscle pain.

Everything I’m trying, everything I’m doing, nothing is working. My pain is increasing, spreading and making life more difficult.

I’m a highly active person and try to push myself as much as possible but it’s been getting harder for me to push myself bc the pain is so bad.

A question; is there a past history of abuse that could be affecting your body, without you realizing it?

 

[Sunshine21]

I am praying for you! I believe I read that doctors get very little training on pain management. There's not much out there for help. Constant pain is mind-numbing. I really feel for you. Have you tried any alternatives? Cost is high for some of them though and that's what stopped me. I wanted to try HBOT treatments but it is too expensive for me. Its hard to find treatments for it. I pray for complete healing for you!

 

[sk8brdkd]

A question; is there a past history of abuse that could be affecting your body, without you realizing it?

I was born with this. I remember my mom telling me when she was pregnant that during those 9 months, I only kicked once. She initially thought I didn’t have legs. After I was born and when she was changing me, I never kicked like a normal baby. She knew then that something was wrong. I had to wear leg braces at 2. Went to doctors for foot problems and toe walking. Had braces on my legs in 2nd grade and then 6th grade which is when other tests started including MRI’s and a nerve conducting test and several others. They couldn’t find anything wrong

 

[sk8brdkd]

I am praying for you! I believe I read that doctors get very little training on pain management. There's not much out there for help. Constant pain is mind-numbing. I really feel for you. Have you tried any alternatives? Cost is high for some of them though and that's what stopped me. I wanted to try HBOT treatments but it is too expensive for me. Its hard to find treatments for it. I pray for complete healing for you!

Thank you.

I have looked up alternatives and have tried a few.

I tried acupuncture and the guy who did it, let me try some Chinese herbal stuff made for cramps but it did nothing

I looked up PRP, cortisone shots, stem cell injections and nerve burning. Most of them are for use with injuries only and won’t help anything else. The nerve burning is meant just for the spine and back problems. I just found out about dry needling this morning which I heard is similar to Acupunture but needling works the muscles which is what I need.

From 2005-2007, my old neurologist tried me on several different meds after the baclofen stopped working. Each med did nothing to help my problem. I stopped seeing him bc he couldn’t do anything more for me. He told me about 2 procedures but felt it wasn’t worth it. 1 was cutting my Achilles’ tendons to relieve the pain but the surgery was iffy bc my pain could get better, worse or stay the same. Not worth the risk in my book. Also, they could put a baclofen pump in me which is supposedly more effective then the pills but they’d have to leave it “open” and I could be more susceptible to infections and could get sick more easily. Nope, no thanks.

About a year ago, I started seeing this pain management doctor. She gave me this pill that is supposed to tell my brain that my body has no pain. It was supposed to take a few weeks to start working. I took it for 8 weeks but didn’t notice anything so I stopped

About... 5 months ago... my one friend was working at a house and the homeowner was selling weed induced brownies and he has heard that weed can help muscle pain so he bought me one. I only tried a very small amount and sure enough, I was in little pain for about 4 hours. First thing that ever “worked”, however, it didn’t always work. That brownie lasted about a month. Sometimes it didn’t do anything for the pain but other times it did. It would only remove the pain for 4 hrs. Just yesterday I tried a weed induced gummy bear. That went straight to my head only and did nothing for the pain. But it did make me sleep for a bit and I felt drunk which I absolutely hate that feeling and only had a little of it. The baclofen is currently not helping. I’m going to try and increase the dosage to 150 mg in the next few weeks to see if that does anything. If not... I’m just going to stop taking it.

But... I have nothing else to try or do. The pain and symptoms increase and spread every few years. Prior to 2004, the pain was only in my calves. After 2004, it went into my thighs. Also in 2004 is when I started with flare ups which the pain was increasing worse then normal

In 2010, the pain went into my feet and Achilles’ tendons. 2012 it went into my hands and arms. 2014 it went into my chest and shoulders when I had flare ups. The flare ups cause me to have terrible chest pain and shortness of breath. I used to get flare ups about 5-10 times a year. They’d last anywhere from 2 days-2 weeks. Now.. I get flare ups maybe 2-5 times a year. In 2016/2017, I started having trouble driving bc my legs and arms got badly cramped. Now.. I’m even having trouble just putting my right foot on the pedal bc having my right heel/tendon touching the car floor hurts. I can’t drive with my leg in the air bc it hurts my leg. I try resting my foot on the side while keeping my foot on the pedal so I don’t need to stretch the tendon so that my foot can be straight. I can only drive for about 10-15 min at a time right now bc of the pain.

I’m beyond frustrated.

My original doctor had told me when I was in 9th grade that before I hit age 30, I’d be in a wheelchair for the rest of my life if this keeps progressing the way it is. Though I wasn’t going to let that happen. I don’t have muscle weakness. Only pain.

I’m very active. I love high adrenaline sports and activities. I went skiing on Wed with a friend... it didn’t work out... I had a tens unit on my thighs and had the setting on very high but initially my calves were killing me in the boots but then the pain shone thru to my thighs even with the tens unit on. It literally took me 40+ min to get down 1 trail that should only take 10 min max. I actually did 3 trails altogether that day. The last time was the worst. I stopped literally 30-50 times bc I was in agony. I tried stretching. I tried upping the tens unit. Nothing worked. My friend was so good to me.

I guess I’m a glutton for more pain and yes I did fall quite a bit with skiing bc I lost strength in my thighs due to the pain. This is only the 3rd time I’ve gone this year. The pain was worse this year compared to last year. Last year I was able to make it through a few runs before needing a break. This year, could only make it down if I stopped often. First time at a ski resort this year, I was in terrible pain. Made it down once on a short green trail and was done. I couldn’t push thru the pain.

 

[brinny]

Thank you.

I have looked up alternatives and have tried a few.

I tried acupuncture and the guy who did it, let me try some Chinese herbal stuff made for cramps but it did nothing

I looked up PRP, cortisone shots, stem cell injections and nerve burning. Most of them are for use with injuries only and won’t help anything else. The nerve burning is meant just for the spine and back problems. I just found out about dry needling this morning which I heard is similar to Acupunture but needling works the muscles which is what I need.

From 2005-2007, my old neurologist tried me on several different meds after the baclofen stopped working. Each med did nothing to help my problem. I stopped seeing him bc he couldn’t do anything more for me. He told me about 2 procedures but felt it wasn’t worth it. 1 was cutting my Achilles’ tendons to relieve the pain but the surgery was iffy bc my pain could get better, worse or stay the same. Not worth the risk in my book. Also, they could put a baclofen pump in me which is supposedly more effective then the pills but they’d have to leave it “open” and I could be more susceptible to infections and could get sick more easily. Nope, no thanks.

About a year ago, I started seeing this pain management doctor. She gave me this pill that is supposed to tell my brain that my body has no pain. It was supposed to take a few weeks to start working. I took it for 8 weeks but didn’t notice anything so I stopped

About... 5 months ago... my one friend was working at a house and the homeowner was selling weed induced brownies and he has heard that weed can help muscle pain so he bought me one. I only tried a very small amount and sure enough, I was in little pain for about 4 hours. First thing that ever “worked”, however, it didn’t always work. That brownie lasted about a month. Sometimes it didn’t do anything for the pain but other times it did. It would only remove the pain for 4 hrs. Just yesterday I tried a weed induced gummy bear. That went straight to my head only and did nothing for the pain. But it did make me sleep for a bit and I felt drunk which I absolutely hate that feeling and only had a little of it. The baclofen is currently not helping. I’m going to try and increase the dosage to 150 mg in the next few weeks to see if that does anything. If not... I’m just going to stop taking it.

But... I have nothing else to try or do. The pain and symptoms increase and spread every few years. Prior to 2004, the pain was only in my calves. After 2004, it went into my thighs. Also in 2004 is when I started with flare ups which the pain was increasing worse then normal

In 2010, the pain went into my feet and Achilles’ tendons. 2012 it went into my hands and arms. 2014 it went into my chest and shoulders when I had flare ups. The flare ups cause me to have terrible chest pain and shortness of breath. I used to get flare ups about 5-10 times a year. They’d last anywhere from 2 days-2 weeks. Now.. I get flare ups maybe 2-5 times a year. In 2016/2017, I started having trouble driving bc my legs and arms got badly cramped. Now.. I’m even having trouble just putting my right foot on the pedal bc having my right heel/tendon touching the car floor hurts. I can’t drive with my leg in the air bc it hurts my leg. I try resting my foot on the side while keeping my foot on the pedal so I don’t need to stretch the tendon so that my foot can be straight. I can only drive for about 10-15 min at a time right now bc of the pain.

I’m beyond frustrated.

My original doctor had told me when I was in 9th grade that before I hit age 30, I’d be in a wheelchair for the rest of my life if this keeps progressing the way it is. Though I wasn’t going to let that happen. I don’t have muscle weakness. Only pain.

I’m very active. I love high adrenaline sports and activities. I went skiing on Wed with a friend... it didn’t work out... I had a tens unit on my thighs and had the setting on very high but initially my calves were killing me in the boots but then the pain shone thru to my thighs even with the tens unit on. It literally took me 40+ min to get down 1 trail that should only take 10 min max. I actually did 3 trails altogether that day. The last time was the worst. I stopped literally 30-50 times bc I was in agony. I tried stretching. I tried upping the tens unit. Nothing worked. My friend was so good to me.

I guess I’m a glutton for more pain and yes I did fall quite a bit with skiing bc I lost strength in my thighs due to the pain. This is only the 3rd time I’ve gone this year. The pain was worse this year compared to last year. Last year I was able to make it through a few runs before needing a break. This year, could only make it down if I stopped often. First time at a ski resort this year, I was in terrible pain. Made it down once on a short green trail and was done. I couldn’t push thru the pain.

I guess I’m a glutton for more pain

i agree.

In addition you're playing "Russian Roulette" with the pain/condition you ALREADY have, and HAVE had.

God have mercy!

Praying that God grants you wisdom and extinguishes any destructive tendencies that drive you to be a "glutton for more pain".

 

[SnowTiger]

I pray that God will guide you in the right direction. I pray for his healing or for the healing from the medical professionals who finally come to understand what is behind your condition. Hang on there. Remember to never give up even when things are bad.

 

[Sunshine21]

Thank you.

I have looked up alternatives and have tried a few.

I tried acupuncture and the guy who did it, let me try some Chinese herbal stuff made for cramps but it did nothing

I looked up PRP, cortisone shots, stem cell injections and nerve burning. Most of them are for use with injuries only and won’t help anything else. The nerve burning is meant just for the spine and back problems. I just found out about dry needling this morning which I heard is similar to Acupunture but needling works the muscles which is what I need.

From 2005-2007, my old neurologist tried me on several different meds after the baclofen stopped working. Each med did nothing to help my problem. I stopped seeing him bc he couldn’t do anything more for me. He told me about 2 procedures but felt it wasn’t worth it. 1 was cutting my Achilles’ tendons to relieve the pain but the surgery was iffy bc my pain could get better, worse or stay the same. Not worth the risk in my book. Also, they could put a baclofen pump in me which is supposedly more effective then the pills but they’d have to leave it “open” and I could be more susceptible to infections and could get sick more easily. Nope, no thanks.

About a year ago, I started seeing this pain management doctor. She gave me this pill that is supposed to tell my brain that my body has no pain. It was supposed to take a few weeks to start working. I took it for 8 weeks but didn’t notice anything so I stopped

About... 5 months ago... my one friend was working at a house and the homeowner was selling weed induced brownies and he has heard that weed can help muscle pain so he bought me one. I only tried a very small amount and sure enough, I was in little pain for about 4 hours. First thing that ever “worked”, however, it didn’t always work. That brownie lasted about a month. Sometimes it didn’t do anything for the pain but other times it did. It would only remove the pain for 4 hrs. Just yesterday I tried a weed induced gummy bear. That went straight to my head only and did nothing for the pain. But it did make me sleep for a bit and I felt drunk which I absolutely hate that feeling and only had a little of it. The baclofen is currently not helping. I’m going to try and increase the dosage to 150 mg in the next few weeks to see if that does anything. If not... I’m just going to stop taking it.

But... I have nothing else to try or do. The pain and symptoms increase and spread every few years. Prior to 2004, the pain was only in my calves. After 2004, it went into my thighs. Also in 2004 is when I started with flare ups which the pain was increasing worse then normal

In 2010, the pain went into my feet and Achilles’ tendons. 2012 it went into my hands and arms. 2014 it went into my chest and shoulders when I had flare ups. The flare ups cause me to have terrible chest pain and shortness of breath. I used to get flare ups about 5-10 times a year. They’d last anywhere from 2 days-2 weeks. Now.. I get flare ups maybe 2-5 times a year. In 2016/2017, I started having trouble driving bc my legs and arms got badly cramped. Now.. I’m even having trouble just putting my right foot on the pedal bc having my right heel/tendon touching the car floor hurts. I can’t drive with my leg in the air bc it hurts my leg. I try resting my foot on the side while keeping my foot on the pedal so I don’t need to stretch the tendon so that my foot can be straight. I can only drive for about 10-15 min at a time right now bc of the pain.

I’m beyond frustrated.

My original doctor had told me when I was in 9th grade that before I hit age 30, I’d be in a wheelchair for the rest of my life if this keeps progressing the way it is. Though I wasn’t going to let that happen. I don’t have muscle weakness. Only pain.

I’m very active. I love high adrenaline sports and activities. I went skiing on Wed with a friend... it didn’t work out... I had a tens unit on my thighs and had the setting on very high but initially my calves were killing me in the boots but then the pain shone thru to my thighs even with the tens unit on. It literally took me 40+ min to get down 1 trail that should only take 10 min max. I actually did 3 trails altogether that day. The last time was the worst. I stopped literally 30-50 times bc I was in agony. I tried stretching. I tried upping the tens unit. Nothing worked. My friend was so good to me.

I guess I’m a glutton for more pain and yes I did fall quite a bit with skiing bc I lost strength in my thighs due to the pain. This is only the 3rd time I’ve gone this year. The pain was worse this year compared to last year. Last year I was able to make it through a few runs before needing a break. This year, could only make it down if I stopped often. First time at a ski resort this year, I was in terrible pain. Made it down once on a short green trail and was done. I couldn’t push thru the pain.

I am so sorry about your struggle. My story is a bit different (most of my problems stem from car accidents) but I know where you are coming from because I have tried dry-needling, baclofen and many other things. Have migraines, TMJ, chronic pains etc. Most of mine was tolerable until a car accident in my college years. Surgery seemed to take my high pain tolerance to extremely low. Sounds like you are able to handle pills but your problem is they stop working if they work at all. I am so sorry! I hate it when the body fights to get well. It is so frustrating.

I liked a MJ product but it cost me $50 plus a tip and I just can't afford it. I want to go back to dry-needling but it's hard where I live to find a dr. The doctor who did it for me left me on the table too long, basically forgot I was there because he was juggling so many patients so I never went back. I did a numbing shot for years. Meds do not agree with me and MJ can make me sick from the THC. That's why I chose the $50 product because the ratio to THC and other compounds is low and I tolerated it so much better. I wanted to do HBOT and floating pools but again costs stopped me.

I have been to PT more times than I can remember. Massage helped me but as a reset only and is costly. Chiro wasn't for me. Pills ruined the rest of my health and I just can't do most of them anymore. I am thinking of trying to heal myself with gut-health diets. And I want to have tests done for sensitivities to foods etc. My doctor has given up on me and tells me to go see a naturopath. I am trying to think of other stuff I've read up on to see if there's something that could at least ease your pain.

I wish there was a pill or procedure that would help you but let's pray God will heal you. I think it is great you haven't giving up on skiing. It is so easy to lose ourselves to pain. And you aren't in a wheel chair so you have a strong will. I know that doesn't ease the pain.

 

[LoricaLady]

I wonder if you have tried things like essential oils as an aid - things like Frankincense, black pepper essential oil, even black bean oil. There is a ton of info on how to use them on the net. They have helped a lot of people, but of course every one is different. I pray you will get whatever natural and/or medical help is right for you.

 

[sk8brdkd]

I am so sorry about your struggle. My story is a bit different (most of my problems stem from car accidents) but I know where you are coming from because I have tried dry-needling, baclofen and many other things. Have migraines, TMJ, chronic pains etc. Most of mine was tolerable until a car accident in my college years. Surgery seemed to take my high pain tolerance to extremely low. Sounds like you are able to handle pills but your problem is they stop working if they work at all. I am so sorry! I hate it when the body fights to get well. It is so frustrating.

I liked a MJ product but it cost me $50 plus a tip and I just can't afford it. I want to go back to dry-needling but it's hard where I live to find a dr. The doctor who did it for me left me on the table too long, basically forgot I was there because he was juggling so many patients so I never went back. I did a numbing shot for years. Meds do not agree with me and MJ can make me sick from the THC. That's why I chose the $50 product because the ratio to THC and other compounds is low and I tolerated it so much better. I wanted to do HBOT and floating pools but again costs stopped me.

I have been to PT more times than I can remember. Massage helped me but as a reset only and is costly. Chiro wasn't for me. Pills ruined the rest of my health and I just can't do most of them anymore. I am thinking of trying to heal myself with gut-health diets. And I want to have tests done for sensitivities to foods etc. My doctor has given up on me and tells me to go see a naturopath. I am trying to think of other stuff I've read up on to see if there's something that could at least ease your pain.

I wish there was a pill or procedure that would help you but let's pray God will heal you. I think it is great you haven't giving up on skiing. It is so easy to lose ourselves to pain. And you aren't in a wheel chair so you have a strong will. I know that doesn't ease the pain.

I'm sorry you're going through a lot of pain/struggles too. Nothing is easy it seems. Can you tell me what MJ is?

My one friend actually just sent me a link to an article yesterday. It's a procedure that the FDA just approved where they implant this device into your spine and it sends electrical impulses to your brain to tell your body you're not in pain. It's supposed to be fairly quick and right after the surgery, the pain is supposed to decrease to about 50% less then what you had been feeling and for most people, within a few days, the pain is completely gone. I sent an email last night to a place that does that near me but they also have other alternatives too so seeing if i can see them this week and talk to them about that or any other alternatives that they may have to try. Thing is... I don't have insurance so I don't know how much any of this will cost but, I do know my parents will help me out if I need it because they don't want me to be in pain anymore.

Honestly.. I have always tried to push through the pain. I enjoy sports/activities. My absolute favorite sport is downhill mountain biking. But, at least w/ that, I have learned how to bike sitting down through most of the obstacles though, I need to stand up for the table tops which is fine.That is an amazing activity. I hope i'll never not be able to do that. I just love it!! Favorite place to go for that is in Vermont. It's a 5 hour drive but the bike park is worth the trip. We do any activity that we want but my best friend knows my limits and he won't push me because he knows how much pain i'm in. He stands by my side no matter what.

 

[sk8brdkd]

I wonder if you have tried things like essential oils as an aid - things like Frankincense, black pepper essential oil, even black bean oil. There is a ton of info on how to use them on the net. They have helped a lot of people, but of course every one is different. I pray you will get whatever natural and/or medical help is right for you.

The only essential oil I've tried is the peppermint oil as that is supposed to help to. I not only tried rubbing the peppermint oil on the muscles that hurt, but I had peppermint oil stuffed in cotton throughout my bedroom. Tried that for a few months and although it smelled great, it didn't do anything.

I never tried the other ones even though I had heard about them. I guess i figured since the peppermint oil didn't help which is supposed to be the best (or so i have heard), i figured it wasn't worth it to try any others but, I will read up on them anyways just to see what is said about them.

 

[sk8brdkd]

The only thing I ever felt work for me is the edible weed. Though, I had gotten a weed gummy bear the other day from someone for free and, it didn't do anything only screwed w/ my head. I had the rest of that gummy bear yesterday which was more then the day before and, it didn't even mess w/ my head. The guy I got it from told me, he just had 1 too and said he felt nothing so that the weed must not have been good quality and he apologized. The best one that worked for me was a weed corn muffin. That was a high medical grade one and after having just a very Very small bit, the pain basically fully left me for 4 hours. My legs felt light and airy for those 4 hours. It was amazing. But... the guy whom I got it from, doesn't have anymore right now and my doctor won't give me a medical marijuana card.

 

[Sunshine21]

I'm sorry you're going through a lot of pain/struggles too. Nothing is easy it seems. Can you tell me what MJ is?

My one friend actually just sent me a link to an article yesterday. It's a procedure that the FDA just approved where they implant this device into your spine and it sends electrical impulses to your brain to tell your body you're not in pain. It's supposed to be fairly quick and right after the surgery, the pain is supposed to decrease to about 50% less then what you had been feeling and for most people, within a few days, the pain is completely gone. I sent an email last night to a place that does that near me but they also have other alternatives too so seeing if i can see them this week and talk to them about that or any other alternatives that they may have to try. Thing is... I don't have insurance so I don't know how much any of this will cost but, I do know my parents will help me out if I need it because they don't want me to be in pain anymore.

Honestly.. I have always tried to push through the pain. I enjoy sports/activities. My absolute favorite sport is downhill mountain biking. But, at least w/ that, I have learned how to bike sitting down through most of the obstacles though, I need to stand up for the table tops which is fine.That is an amazing activity. I hope i'll never not be able to do that. I just love it!! Favorite place to go for that is in Vermont. It's a 5 hour drive but the bike park is worth the trip. We do any activity that we want but my best friend knows my limits and he won't push me because he knows how much pain i'm in. He stands by my side no matter what.

Thanks!
Oops, by MJ I think I meant MM, medical marijuana . That device sounds promising. I hope you can find a way to get it. Physical pain can drive a person insane. So many of us have constant pain and I got to believe there's so much more that can be done.

I am glad you have support and your parents will help. That's the other thing: cost. People suffer needlessly when there are many options to try. We should be allowed to try at least if we are suffering. People shouldn't have to live life in pain.

Your friend sounds awesome. I too try and still do things. I adjust and modify my favorite activities. Never been to Vermont but the pics I've seen show how beautiful it is.