What Pain Does

[keiramarcos]

I'm entering another round of medical testing -- the new specialist put lupus and rheumatoid arthritis on the table today. I've known that was coming for a while so more tests, x-rays, and blood work. More stress.

Sometimes, I spend the first forty-five minutes of day crying because I pretty much hurt all over. It's get better after I start moving but moving is the really hard part. I can't spend more than twenty minutes on my feet without them both feeling like they're on fire.

Pain makes me mean. There is no way around it. The more it hurts the more impatient, ill-tempered, and hostile I am. I take over the counter pain meds mostly because the narcotics scare the fuck out of me.

Pain makes it hard to sleep and almost impossible to get rest so you wake up exhausted and honestly just genuinely depressed because you know it's not going to get any better as the day goes on.

Pain makes it hard to concentrate.

Pain makes it hard to think.

Pain makes it really easy not to give a fuck.

Pain just breaks you one fucking day at a time.

I'm gonna go some eat cheese cake because fuck all this.

Comments

[desertpoet]

I'm so sorry you're going through this Keira. Pain does break you down especially when you know it won't gwt better. I have cerebral palsy and it comes with muscle spasms and other pain I've lived with my whole life.

I agree with you on the meds I've stuck mostly to Motrin because i don't want to become dependent on something stronger. People who don't have chronic pain really can't understand how debilitating it can be. I hope the doctor finds something that can help you. Acupuncture has helped me a lot with pain management. it might be worth a try.

*hugs* Sending good vibes your way

Chrissy

[barb-b86.livejournal.com]

I am sorry Keira that you are having pain problems, I can understand where you and Chrissy are coming from. I was also born with CP that has left me numb on my right side. When the muscle spasms started to effect me on my left side we had to look at taking prescription medicines, along with just being diagnosed with Ankylosing Spondylitis (AS). I hope they find answers soon for you.

Barb_B

Pain

[mittens456.livejournal.com]

I am so sorry that you are facing this pain each day. My hope is that the doctor might find a way to help. And that cheese cake might make today a bit easier. Sending good thoughts your way.

[arlinya.livejournal.com]

My deepest sympathies. I hope that the diagnosis is an effective one and one that causes the least amount of problems and leads to (at the very least) effective management. My greatest hope that it isn't lupus.

[timespirt.livejournal.com]

Did they check for fibromyalgia? I have that and am in pain all the time. I get very little sleep myself because of it. I hope they find something that is easily dealt with so you can get back to felling better again.

"HUGS"

[keiramarcos]

It's on the list. I've just recently ruled out all sorts of bone/blood cancers. Today was my first appt with a rheumatologist.

[jademac2442.livejournal.com]

Thats terrible. I hope you feel better soon. I imagine that it's particularly bad feeling like you are just stuck in limbo about it, too, with so little hope.

If I knew where you lived I'd send you Oreos and expresso fudge macaroons. :)

Will keep you in my thoughts.

[sarehkert.livejournal.com]

Life sucks. Cheesecake and Oreo's help

[wordwitch.livejournal.com]

I live with someone in constant pain, and so I deeply sympathize. I know that you have already done all the investigation on pain management just because that is how you are, so for others in the same situation, I'll second the acupuncture and raise you a heated bed pad. We were amazed how much just relaxing the winter bracing against the cold helped.

[jillyjames]

All of this. I can completely relate. Chronic pain can be soul-crushing.

I hope they are able to sort out the source and get you better treatment.

*hugs*

[junnights.livejournal.com]

I'm really really hoping that whatever is going on with you is found quickly and most of all.. is treatable and or fixable. (and soon)

Did google a little (please ignore this part if you're not interested), and if you want to try; I did find a link that seems to have serious tips for pain management (found several similar ones but this one seems to be the most comprehensive... and includes lists for both sudden and chronic pain). I've no doubt you've tried at least a few of these (and that others would have to wait since they're still looking for the cause) ... but if even one could make your days a little easier until they (hopefully soon) find what is wrong and fix it.. Will warn you that I find the page a little odd looking (to my eyes).. but overall the content seems quite good. (focusing on food is one tip among many that seems to hold potential) http://www.wikihow.com/Handle-Excruciating-Pain

[keiramarcos]

Thanks ;-)

[azurehart.livejournal.com]

Chronic pain is very difficult to deal with. Moreso I think because there are usually few physical signs and there are those that tend to discount the so-called "invisible illnesses" because of this.

Honestly, if I didn't have the escapism of fandom and all you lovely, talented, barking mad people I don't know what I would do with myself. You have unknowingly helped me through some of my rough spots with my own pain issues, and I'm always here to return the favor. *hugs*

[lilz54.livejournal.com]

I would be lying if I said I know what you must be feeling, because I have no idea what you are going through. However, I do live with someone who is in constant pain, and that makes me feel helpless. Helpless because he is hurting and I can't take it away.

So, go ahead and get as mean and angry as you want. And if anyone gives you a hard time about it, just let us know and we'll help you hide the bodies.

[amt oz (from livejournal.com)]

Man oh man. I can sympathise. My partner has some major medical issues that are now somewhat under control.
My brother in law was recently diagnosed with rheumatoid arthritis and they've got him under correct medication finally. He had to find a dr that listened to him, not just tell him he was depressed. The meds the previous dr gave did more harm than good. He's finally feeling better, less pain and meds and back at work.
Keep looking and checking to find the problem, then kick it in the ass.
Good luck and hugs.

RA

[angeliquemb9.livejournal.com]

As someone who suffered from rather severe RA for 3 years, I know where you're coming from, and I'm sincerely hoping that you have a good rheumatologist. I took OTC meds too, and she finally convinced me to try a non-narcotic pain med. The difference in attitude resulted in my marriage lasting a few more years - I was truly astonished at how much of an absolute bitch I was. Chronic pain sucks.

In the meantime, I was introduced to an author named Louise Hay, who looked at the whole Chinese philosophy of mind/body/spirit connection and figured out quite a lot of why people develop certain diseases. The rheumatologist could address my symptoms, but only I could fix the underlying issue that caused it. It took time, but my fingers straightened back out, things started working again, and I don't take medicine at all now except on really bad days when I've overdone everything. I still can't wear heels, which irks me no end, but I'm more comfortable in my own skin these days.

Hang in there. It *will* get better. And do somethin' special for your husband periodically, 'cause he loves you enough to put up with the bitchiness.

[haunted1019.livejournal.com]

I'm so sorry you're going through this struggle. I hope you find some answers soon and find a pain management routine that works for you. My niece is currently going through her own search for answers, and I know how frustrating it can be as the doctors go through their checklists. I wish you the very best.

Pain

[desert-rose11.livejournal.com]

Sorry to read this. Chronic pain is debilitating and depressing. My own, much less than yours - makes me feel old and depressed especially when trying to get out of bed. Hope & prayers that you that you find relief

[adafrog.livejournal.com]

{{{hugs}}}

[kohaku-imaki55.livejournal.com]

Oh! My!
I thought you had gotten better. I'm very sorry to hear that is not true. I will be sending good thoughts your way and ask my mom to put you in her prayer circle. Because prayer is just good thoughts and anyone can use them no matter what religion they are or where they come from. I wish I could give you a hug but California is too far from NY.
Stop keeping things to yourself we all love you and wish you well!

If it was me I'd choose chocolate that makes me feel better.

ps my daughter says to ask how are your kitties?

[keiramarcos]

I have puppies ;-).

And they're great. Much more energetic than me!

[danceswithgary]

I am so sorry to hear about this. I would never wish my life on anyone else and it breaks my heart to hear of someone going through so much pain. I hope your doctors are able to come up with a pain relief regimen that works for you. Unfortunately, I have no good advice for you because mine has pretty much sidelined me for the past few years. Autoimmune diseases are simply horrible.

Wishing better days for you. *gentle hug*

PS. My best pain management strategy (avoiding the 'good' drugs as much as possible) is "more input" a la Number Five. I play a MMORPG while watching something on Netflix. Of course, that means I do nothing 'useful' on those days. :-P

[keiramarcos]

I find relaxing to be the most difficult part but lately I've gotten into adult coloring. It helps keeps my hands active without putting too much pressure on the bones AND the detailed worked keeps my mind off the pain which sometimes is so bad I can't sit anywhere but in the middle of my memory foam mattress (best purchase ever).

[batspit.livejournal.com]

Chronic pain is unbelievably soul sucking. I'm so very sorry you are part of the club. I agree with you on traditional drugs, those are way scary. I hope then can track something down that you can fix.

Since you have something out of the box going on, I'll tell you that the one thing that made the difference between having to build up my courage for 10 minutes before I can stand up to go pee, and being almost willing to just move, is selenium supplementation. It is hugely important and most doctors know less about nutrition than Sysko.

You know how I figured it out? The bowl of chocolate covered Brazil nuts was *right* in front of me... One of my best ever bad decisions.

I've found a couple of things that have made a big difference. I know you're overwhelmed with good wishes and advice, so if I can help, let me know.

pain sucks

[loobylynne.livejournal.com]

It does, it just sucks. It sucks the life right out of us. If we let it. The hardest thing is not knowing why. I hope you find your answers, because that will make it much easier to find ways to alleviate the chronic pain. But, because we all have to live in the moment, I hope you enjoyed your cheesecake.

[bastdazbog.livejournal.com]

I hope they can help you Keira, and that you get a swift answer and resolution. Living with pain is damaging in so many ways, to us and to the people who live with and love us.
I'm in almost the same boat in dealing with pain (I have fibromyalgia and menstrual problems). I have really bad reactions to drugs, except ibuprofen, so for my pain I had been taking prescription 800mg Advil, and while it worked the pain relief only lasted 5 to 6 hours (on good days) instead of the 8 hours it was supposed to, and it has damaged my liver. So I looked for other options and after a lot of different things I tried turmeric.
It works for me. I take turmeric everyday now for my pain instead of the meds and while I do still have bad days where I need more pain relief than the turmeric provides, I can take a single OTC advil and it takes care of it. But that's only a handful of days a month now instead of everyday, and it's a 200mg pill instead of an 800mg pill, and each month that's necessary less and less.
There are commercial turmeric pills available, but I make my own capsules with organic whole ground turmeric. I take them with black pepper and a spoonful of nut butter, or with a meal.
Here's one website with some info, but there's lots of sites now with info as it's become a popular thing -
http://www.turmericforhealth.com/turmeric-benefits/health-benefits-of-black-pepper-and-turmeric

(I am taking the turmeric with the knowledge and approval of my Doctor.)

I wish you all the best. (((hugs)))

[batspit.livejournal.com]

If turmeric is really doing it for you I highly recommend a product called 'curamin'. I get mine at amazon. It's turmeric, boswellia, and dlpa and it's been amazing for me. Most days that's all I need if I'm careful with my triggers.

[alaine1910.livejournal.com]

Sending you hugs and a Baileys chocolate cheesecake.

[dragonbait.livejournal.com]

I'm so sorry you are hurting :( Pain is an insidious and vicious dance partner. Hunting for zebras is a hard journey in the medical world (doctors are taught when you hear hooves, think horses, not zebras).

I was lucky in my search for reasons and happened across an immunologist who wanted to diagnose the exact rare condition I ended up having. It was strange to see how giddy he was when he told me I had a rare, potentially life threatening condition. For me, the foot pain and connective tissue issues are a sign that I have weird stuff going on with my immune system... if rheumatology can't find your answers, immunology and endocrinology would probably be good choices for your next pass.

Find a doctor who won't stop searching for answers. My fingers are crossed for you! I hope you find answers soon and those answers lead to a solution...

[esteefee]

seriously, fuck everything because pain becomes everything.

[keiramarcos]

Yes. At this point, I can't even press my legs together or cross them at the ankle because my bones hurt when I do. It's very, very weird.

I know it doesn't help but

[denimleigha.livejournal.com]

My Mom has gone, is going, and will be going through something similar to this for almost 3 years now. The doctors (yes multiple) did tons of testing and started throwing out words like auto-immune diseases and lupus etc., etc., etc., you have probably heard them all by now. Then she started researching them on the internet and scared herself silly. But some of the home remedies help some once you know what you are dealing with.
The things she has learned are that some of it goes away (tones down) when they get the body chemistry back on track, 4 of a 200mg otc med is prescription strength, a heating pad really is a girl's best friend for more than one reason and that chocolate and ice cream do help if only to improve your mood, I guess cheesecake works to.
Also that husbands are good for foot rubs, hand rubs and just massages in general.