Living with chronic pain...

[Farrah]

This thread may only be of interest to a small subset of the GB, but until a few days ago, it hadn't dawned on me that anyone else here lived with the condition. I'm hoping this will be a place where we can inspire and encourage one another, share tips and treatments that have worked for us, or let loose a good pain-rant as needed.

 

[gravyrug]

I've spent a fair amount of time living with people who have chronic pain, and a place to vent is a good thing.

<comforthugs>

 

[Farrah]

I've spent a fair amount of time living with people who have chronic pain, and a place to vent is a good thing.

<comforthugs>

Ya know gravy, it might be good for clutch1 to have a chat with you. He has taken such good care of me in the last couple of months, and I can only imagine how all this has affected his life. It can't be easy to get me to my doctors' appointments, fix all of our meals, help me manage my medication, stay in with me every weekend, etc. It takes a special kind of man to care for, really care for, his partner. So kudos to you and to him and all the other spouses and SO's (and friends and family) who have stepped up to the place when needed.

 

[gravyrug]

Ya know gravy, it might be good for clutch1 to have a chat with you. He has taken such good care of me in the last couple of months, and I can only imagine how all this has affected his life. It can't be easy to get me to my doctors' appointments, fix all of our meals, help me manage my medication, stay in with me every weekend, etc. It takes a special kind of man to care for, really care for, his partner. So kudos to you and to him and all the other spouses and SO's (and friends and family) who have stepped up to the place when needed.

Any time he needs to talk. He's doing really well so far. I'm glad you found him.

 

[TeeTee]

This is cool, this is probably a better place to vent. Thank you Farrah.

Wow I noticed you are only 30, that's really young. I was 37 when I was diagnosed with it and my family Dr. said I was the youngest he's ever
had to inform. In a way your lucky because there are steps to help. Like calcium pills to strengthen the bone. Coral Calcium to be exact. The best for the bones.

 

[celticbtrfly]

This thread may only be of interest to a small subset of the GB, but until a few days ago, it hadn't dawned on me that anyone else here lived with the condition. I'm hoping this will be a place where we can inspire and encourage one another, share tips and treatments that have worked for us, or let loose a good pain-rant as needed.

I tend to avoid posting here on the GB to avoid the drama, but living with chronic pain myself with a chronic pain condition for most of my life, I had to comment. Chronic pain is something that impacts every aspect of one's life--including interactions with others and sex. Thanks for putting it out there to give us a voice.

 

[Farrah]

Thank you for coming out and sharing what you're going through.

Wow same symptoms too, yep exactly the same disease. I was diagnosed with it 10 years ago. After the first surgery (spinal fusion) I was relatively able to manage it. A few flare ups in the past years, end up back in PT, usually when I'd get an epidural back & neck it would work, plus the pain management (pain killers) I've been on since it all started.

This time scares me because the pain is like it was before surgery the first time. You learn to live the best you can with the pain. Some days are better than others and when I turn into Betty White I try and stay away haha.

Noor has always inspired me as I have read how she deals with her chronic pain, she too is always so positive. I'm sorry you have to endure this disease,
Soon you will grab hold and master this disease and not let it control your whole life. Are you looking at surgery as well?

Tee, I hope it's okay that I quoted your post here. If it's not, just let me know, and I'll be happy to delete it.

Yeah, consider me awe struck. You must be incredibly strong to have battled this for the last 10 years. Knowing, absolutely knowing, the pain you've experienced, I am overwhelmed at hearing how long you've soldiered on. An extended family member has had 20 back surgeries in the past 20 years. I'm scared to death that there is no ultimate fix, that I'll have to continue to seek treatment for years to come. Having said that, I feel so relieved to finally be addressing the problem. I have my first epidural this coming Monday, and I meet with a neurosurgeon at the end of the month.

About two months ago, after being told time and time again that I probably only had a pulled muscle, the pain began to escalate so quickly that I went to the ER. While I was there, they found a DVT, my second, with the first having gone into a pulmonary embolism. Because of my medical history, treating the clot became top priority, and my pain was put on the back burner. It's only been very recently (after demanding an MRI), that I found out what I was dealing with.

Because I have to be on blood thinner, my doctor wouldn't write a script for pain meds. This is the guy who told me it was all in my head, btw. He must feel like a schmuck now, because after I met with a pain specialist, the doc has agreed to let me go off of the blood thinner for a week in order to receive the first epidural and try some pain meds. The meds definitely help, but it's like screaming into a pillow...the sounds are muffled, but I'm still screaming my head off.

I've been fighting the blues, big time. Being unable to work, I just feel so worthless. I hope you know how much it means to hear about your perspective on living with chronic pain. I want to fight this with dignity, too. So thank you so much for sharing your story. I hope you'll use this thread if you're having a bad day, or if you have some great health news to celebrate. It can be our (and others') little support group.

 

[islandman]

I have had a mother for the past 39 years now.

 

[Farrah]

Any time he needs to talk. He's doing really well so far. I'm glad you found him.

He's amazing. My parents have been great, too. And my friends? Well, I am very blessed, indeed.

This is cool, this is probably a better place to vent. Thank you Farrah.

Wow I noticed you are only 30, that's really young. I was 37 when I was diagnosed with it and my family Dr. said I was the youngest he's ever
had to inform. In a way your lucky because there are steps to help. Like calcium pills to strengthen the bone. Coral Calcium to be exact. The best for the bones.

Wanna know something really odd? My dad has had aches and pains for years, with his pain escalating this past winter, around the time my lower back and leg pain began. He had an MRI done in March, and our spines could be one and the same. Exact same symptoms, exact same diagnoses. We even have the same bulging discs. But my dad is sixty. My age is part of the reason no one took me seriously until now.

Coral Calcium. I will find some immediately, and I thank you so much for sharing this advice.

I tend to avoid posting here on the GB to avoid the drama, but living with chronic pain myself with a chronic pain condition for most of my life, I had to comment. Chronic pain is something that impacts every aspect of one's life--including interactions with others and sex. Thanks for putting it out there to give us a voice.

Yay! Yay to the thread already being helpful, not yay to your pain condition. And I totally agree...I can't think of a single area of my life that hasn't been impacted. Can I just say here and now...gawd, I miss the sex.

Please come visit us here anytime. Share as much or as little as you like.

 

[Farrah]

I have had a mother for the past 39 years now.

Oh jeebus. If mothers count, you've only got 9 years on me.

 

[parodyluvr75]

I have had a mother for the past 39 years now.

I lost mine.

It took moving 5 times without a leaving a forwarding address.

 

[islandman]

Oh jeebus. If mothers count, you've only got 9 years on me.

Quality, not only quantity.

 

[JAMESBJOHNSON]

My wife lives with chronic arthritis pain in her hips; I have it in one leg, and I feel for her.

 

[Not Normal]

I've had a headache of some sort since I was a teenager in the 80s. I believe there are a number of contributors, but there's not specific medical "reason." I have allergy issues, which contribute, and I take OTC meds for that. Back when I had good insurance, I saw a neurologist, had CAT and MRI scans, tried a few different meds and nothing changed much. I also have muscle and joint pains, and goofy posture which I'm sure doesn't help. I'm not sure if I have a high pain threshold, because I can power through it and go on with my life fairly normally, or if I just an oversensitive pussy. I take Excedrine every morning, and sometime at other times in the day. When it's more muscle based I take Aleve as well. I stretch in the shower, and have something called a Spineworx for when my back is really bad. A couple years ago I started taking Amitriptyline, which helps me sleep, and makes things less painful. Pain is just something that is always there. Illinois recently passed a medical marijuana bill, and once that goes into effect I may try edibles, as I find smoking anything gross.

 

[BotanyBoy]

Yeup....doc's almost killed me with opiates, I was taking enough in one dose to kill a skid row heroine junkie in seconds, 5-6 times a day.

After kicking it I switched to cannabis...never looked back.

 

[Balladeer08]

Physical pain... I think I divide it into three categories: muscle, joint and headache.

I am light-sensitive when I don't have a headache. When I have a migraine, I can damn near see through walls. I have an office with not windows, I put a towel along the bottom edge of the door. Dark!

Muscle pain and joint pain I tend to treat pretty much the same way: ibu on the inside, aspercreme on the outside. Hot showers. And try to move in ways that don't aggravate it.

What I could really use is a way to handle emotional pain. I seem to have no defenses for it, and it never goes away. I kind of look forward to Alzheimer's, and hope it makes me forget. My luck, I'll only forget the good stuff.

 

[Farrah]

Quality, not only quantity.

Oh. Then we may be even.

My wife lives with chronic arthritis pain in her hips; I have it in one leg, and I feel for her.

I'm really sorry to read this. I have bursitis in my hips, and it burns so badly. And leg pain is horrible, too (I really just want to cut out my sciatic nerve and be done with it). How do you manage when you're both in pain? I think this is what I am going to have to learn to do...carry on despite how much it hurts. I *think* I can do that after some treatments. For now, I'm at a 9 or a 10 every other day, and I can't even think, much less go about my life.

I've had a headache of some sort since I was a teenager in the 80s. I believe there are a number of contributors, but there's not specific medical "reason." I have allergy issues, which contribute, and I take OTC meds for that. Back when I had good insurance, I saw a neurologist, had CAT and MRI scans, tried a few different meds and nothing changed much. I also have muscle and joint pains, and goofy posture which I'm sure doesn't help. I'm not sure if I have a high pain threshold, because I can power through it and go on with my life fairly normally, or if I just an oversensitive pussy. I take Excedrine every morning, and sometime at other times in the day. When it's more muscle based I take Aleve as well. I stretch in the shower, and have something called a Spineworx for when my back is really bad. A couple years ago I started taking Amitriptyline, which helps me sleep, and makes things less painful. Pain is just something that is always there. Illinois recently passed a medical marijuana bill, and once that goes into effect I may try edibles, as I find smoking anything gross.

I have never suffered from migraines, but I know people who have, and I know how debilitating they can be. I'm really, really glad that you've found some things that work for you and that you're able to carry on with your totally groovy life. Also, I want a spineworx! For real. I think my dad could benefit from one, too. Thanks for sharing the link.

 

[dolf]

you guys have my sympathy.

 

[Farrah]

Yeup....doc's almost killed me with opiates, I was taking enough in one dose to kill a skid row heroine junkie in seconds, 5-6 times a day.

After kicking it I switched to cannabis...never looked back.

About 7 years ago, my fibromyalgia was treated with everything except heroin, I think. I was a zombie and had to ween myself off of everything, because the pain clinic was more than happy to keep me doped up. Mo' money for them.

I'm beginning to wish that I lived in a state allowing medicinal marijuana. Smoking it has never been good for me, but like NN said, I would definitely consider edibles.

Physical pain... I think I divide it into three categories: muscle, joint and headache.

I am light-sensitive when I don't have a headache. When I have a migraine, I can damn near see through walls. I have an office with not windows, I put a towel along the bottom edge of the door. Dark!

Muscle pain and joint pain I tend to treat pretty much the same way: ibu on the inside, aspercreme on the outside. Hot showers. And try to move in ways that don't aggravate it.

What I could really use is a way to handle emotional pain. I seem to have no defenses for it, and it never goes away. I kind of look forward to Alzheimer's, and hope it makes me forget. My luck, I'll only forget the good stuff.

Ah, a trifecta! Aren't you the lucky one?

Obviously, I'm kidding. I'm sorry you have so much to deal with, and I think it's great that you've found a routine that provides some relief. As for the emotional pain, I know that it's just as difficult to treat. I hope you are able to find some help for that, too.

 

[Farrah]

you guys have my sympathy.

 

[celticbtrfly]

Yay! Yay to the thread already being helpful, not yay to your pain condition. And I totally agree...I can't think of a single area of my life that hasn't been impacted. Can I just say here and now...gawd, I miss the sex.

Please come visit us here anytime. Share as much or as little as you like.

LOL...thanks. And I belong to a lot of online support groups for chronic pain, but they all seem to avoid the topic of how it impacts intimacy.

Since others are sharing...I was diagnosed with Fibromyalgia when I was 15 years old (so, 20 years ago). But honestly, I don't remember a time in my life when I wasn't dealing with pain and fatigue. Over the years, I've had to deal with the other conditions that frequently accompany Fibro. Generally, I was going pretty well managing the symptoms until about a year ago when things fell apart for me. Right now, I'm home dealing with some weird vertigo thing--we can't figure out if it's viral or having to do with my middle ear--but it makes doing anything difficult. Plus, all the running into stuff and falling? Doesn't exactly help the pain stuff at all. I've got some other stuff going on healthwise right now that my medical team and I are trying to figure out.

My husband is great....but he gets (understandably) frustrated. He's watched me go from a fairly active (albeit, with some limitations), independent woman to someone who's unable to do a lot in a pretty short amount of time. And it's lead to isolation, depression, anxiety...and anger. My circle of friends have been supportive, but they start to wonder about the "but you don't look sick" so why can't you (fill in the blank)? Work has been as supportive as it can be. (Of course, my work environment is part of the problem, but that's a story for another day.)

My biggest fear right now? That I'm as good as I'll get and things will keep going downhill. Or that this specialist I'll be seeing in a few weeks will add to my diagnosis. Or that I'm a failure and will continue to let everyone down. The body may not work that well at times, but the brain is still pretty active (sometimes, too much so!), and that's a dangerous combination.

But because I'm trying to focus on the positive right now...it's a beautiful day here in Northern California, and I'm looking out on my pretty backyard with the door open to let in the fresh air and sunshine. I've got enough in me to work on another story for lit.

Oh, and a helpful tip for sex and chronic pain? Liberator ramps. We have three, and I love the freakin' things. (They're also great for restorative yoga positioning....and that's what I told my family when they helped us move a couple months ago.)

 

[Phelia]

you guys have my sympathy.

Mine too. I have friends and family members who deal with chronic pain and I am always impressed by their strength. I can't even imagine how difficult it must be

 

[JAMESBJOHNSON]

Oh. Then we may be even.





I'm really sorry to read this. I have bursitis in my hips, and it burns so badly. And leg pain is horrible, too (I really just want to cut out my sciatic nerve and be done with it). How do you manage when you're both in pain? I think this is what I am going to have to learn to do...carry on despite how much it hurts. I *think* I can do that after some treatments. For now, I'm at a 9 or a 10 every other day, and I can't even think, much less go about my life.



I have never suffered from migraines, but I know people who have, and I know how debilitating they can be. I'm really, really glad that you've found some things that work for you and that you're able to carry on with your totally groovy life. Also, I want a spineworx! For real. I think my dad could benefit from one, too. Thanks for sharing the link.

We're 65, not youngsters, so we're not so athletic as we once were, and we're retired. For us the pain is better than whats coming; for you, youre young and have the future, so it has to be worse.

I have a friend who had chronic pain in his face. He stayed comatose on drugs and asleep most of the time. I finally convinced him to see an expert at the U of Alabama. The guy made a tiny incision under the ear, clipped a nerve, and that was that. No more pain. Some mild numbness.

So keep looking for a magician, theyre out there.

 

[dolf]

most of my clients have chronic pain. I try hard to be gentle but I can see in their faces how even the smallest movements can be the cruellest torture. that they can find it in them to smile and thank (when, in their situation, I would want to scream and lash out), strikes me as an amazing show of strength. they deserve a medal just for getting out of bed.

 

[GuiltyPleasure]

Ya know gravy, it might be good for clutch1 to have a chat with you. He has taken such good care of me in the last couple of months, and I can only imagine how all this has affected his life. It can't be easy to get me to my doctors' appointments, fix all of our meals, help me manage my medication, stay in with me every weekend, etc. It takes a special kind of man to care for, really care for, his partner. So kudos to you and to him and all the other spouses and SO's (and friends and family) who have stepped up to the place when needed.

This is so true. I have Multiple Sclerosis, diagnosed in the 90s and my husband has cared for me all these years. In my time I have met a lot of M.S sufferes and seen so many marriages crumble and fold under the same situation. I gives thanks evrey single day for his support and love. To all of you suffering chronic pain, I wish you strength and better days.