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lovedbyHim
07-10-2011, 04:48 AM
Can you tell me how you manage your pain when medications are not enough? How do you many muscle spasms and nerve pain? It makes me so worn out.

Gizmo
07-10-2011, 05:27 AM
I don't have any pain meds, besides Tylenol and occasional Advil, so I must not be anywhere near your pain level Tammy. I do know from hurting my back from time to time that for me muscle spasms and nerve pain are the worst. I'm totally laid up and can't think of anything else when that happens, and I think that if I had to deal with it for a long period of time I would go crazy. So, that is my long winded way of saying that I am sorry you are in so much pain and have been so sick.

The following recommendations come from having a daughter with chronic pain:
1) There are quite a few options when it comes to pain meds. For some people one thing might work great and not work at all for another. Call your doc tomorrow morning and see if you can try something else - preferably something that gives you some flexibility to take a little more for breakthrough pain. If he or she can't help you, ask for a referral to a pain management doc or rehab specialist. We've had the best luck with rehab docs - plus they see a lot of nerve pain and muscle spasms.
2) Most docs are reluctant to prescribe narcotics for chronic pain, but are more willing to do so if it means you can get up out of bed and be more active. If your pain is from your female parts- then that is acute pain and they theoretically should be more willing to give you something strong because it will be short term.
3) The worse your pain gets, the more medication it takes to control it - and we've been told (by the good pain docs) that people who have chronic pain have a higher tolerance to narcotics and therefore need and can handle higher doses. Most GPs and rheumy's have a threshold for how high a dose they are willing to prescribe.

Do you have access to a hot tub and can you tolerate the heat? Have you tried acupuncture or massage? My daughter gets very busy with crafts when she is hurting, trying to distract herself and engage a more pleasurable part of her brain. Funny movies - laughter is supposed to release endorphins that decrease pain. If you aren't taking narcotics, I bet that bottle of wine will make the movies even funnier! Rubbing the affected part, or the unaffected part if that is too painful, is supposed to help by giving your nervous system another sensation to process.

That's about all I got this morning, Tammy. I hope you are able to find some relief today, both physically and mentally.

ruziska
07-10-2011, 07:09 AM
How do I deal with the pain? I avoid painkillers and use them as a last resort only. I meditate. I visualize. I distract myself usually with knitting (unless my hands and/or wrists hurt then I find something else). Immersing myself in a good book is a great distraction (works with housework too). Heating pads are a lifesaver as are hot baths.

lovedbyHim
07-10-2011, 07:13 AM
Wow this is awesome Gizmo! I will listen to all of this. No I am not on narcotics. I am however in cymbalta, lyrica, lodine, & skelaxin. To me this seems ridiculous especially since pain breaks through. Do you want to know when I don't have pain? When I am Lieing flat. Lol That does not work so good driving clients around, making dinner, or handing wash.

Thanks again dear. I am not sure what that pain is from. I can't sort it out just yet. Upper back helped by cymbalta, low back pain relentless. The BF did get the wine after my fit (grin). I call myself "Cranky Pants" lately.

rob
07-10-2011, 08:24 AM
Hi Tammy,

I honestly don't exactly know how I manage much of the pain I have. For the low grade constant stuff I take Naproxen when needed. Being an anti-inflammatory it doesn't directly work on the pain, but it calms down the inflammation causing it. As you probably already know, this stuff can be hard on your stomach if taken without food, and sometimes even with.

I have taken Neurontin in the past for neurological pain, and it worked fairly well. Makes you kinda loopy though.

My neuro gave me a prescription for 20 Oxycodone/Acetaminophen tablets, but those are only to be used if I have another Trigeminal Neuralgia flare. They take a little edge off of that pain, just enough to get me through until I can get to the ER and have something more powerful. Other than for that one thing, I don't touch opioids unless absolutely necessary.

The rest of the pain, I, well I suppose I disconnect from it mentally. When I was in the Army we'd go on some really frakking long roadmarches (20-25K) with full gear, up and down hills. I would get myself into a state of mind, kinda like I was on autopilot. I was aware of the pain in my feet and legs, but it was like it was off in the distance, not getting to my brain enough for me to pay much attention to it.

I basically do the same thing now for the pain that can't be dealt with effectively, or practically, with meds. I tune it out, but I have no idea how to explain how I actually do it. I hope this makes sense.

Rob

Gizmo
07-10-2011, 08:34 AM
Wow this is awesome Gizmo! I will listen to all of this. No I am not on narcotics. I am however in cymbalta, lyrica, lodine, & skelaxin. To me this seems ridiculous especially since pain breaks through. Do you want to know when I don't have pain? When I am Lieing flat. Lol That does not work so good driving clients around, making dinner, or handing wash.

Thanks again dear. I am not sure what that pain is from. I can't sort it out just yet. Upper back helped by cymbalta, low back pain relentless. The BF did get the wine after my fit (grin). I call myself "Cranky Pants" lately.

Do you think the low back is related to your female problems? That is a common place to have referred pain. Remember when you were in labor ;o)? NSAIDS are what they usually prescribe for that type of pain, but as Rob says, they are hard on your stomach. Voltaren comes in a gel form now, and since it goes directly on the affected area, it bypasses the stomach. My daughter got an Rx for it and my husband and I tried it too - it's good stuff. Not quite as effective as oral, and you have to put it on all the affected areas, but I think I'm going to ask for some for my achy joints. Not sure if the gel would work for organ pain (if that's the cause).

Once the dust settles on your abdominal problems, if you still have that pain, you might want to try to figure out the cause. Maybe PT would help the upper back pain and muscle spasms.

lovedbyHim
07-10-2011, 08:38 AM
Thank you Rob. I think it does makes sense. I used to run 10 miles a day. The first several miles were sometimes a painful experience and then I was on auto-pilot. I believe it is a meditative state of being if I can get there. Tonight I decided to go on a picnic next to the river and try to walk a little more. Nature is very good for me.
Thanks Rob for the help.

lovedbyHim
07-10-2011, 08:55 AM
Gizmo honestly it feels like back labor all day long. Ugh! Won't know if organ related or fibromyalgia until biopsy comes back I guess. Ibuprophin helps a little but at 600 mg. Grimace...... doc put me on high dose for a week only. Tomorrow I am calling PCP to get water pill script to remove most of the fluid in my abdomen. Can you believe 5 pounds in one day? How crazy is that? I look great when I wake up. Lol Too bad my boyfriend only sees me after I swell.

Thanks again for your wisdom everyone. I'm getting lost in the distraction of the pain.

sharpiessave
07-10-2011, 11:02 AM
Tammy, I'm so sorry you're hurtin' so bad. Distraction is definitely one way to go. For me it comes in the form of Netflix and Sharpies. I tend to spend a whole lot of time these days watching Lost and coloring. Sharpies really do save. . .

I've been avoiding talking about the pain aspect of this whole thing for so long because, well. . .because I'm ashamed of it. Sort of. And I'm also really defensive about it. It's complicated. Narcotics. That's how I deal with the pain. Vicodin. And boy, do I struggle with it.

When I worked in the ER we had so many frequent fliers and seekers. They knew which doctors would give them their drug of choice, and what those docs drove. They would scour the parking lot for their favorite doc's car, and come on in for their fix when they saw it. I should also mention that I worked there at a time when most nurses and docs were completely ignorant about fibromyalgia. I remember once asking a nurse what it was. She said, "It's a diagnosis for people who want drugs all the time." Idiot.

So my shame in taking narcotics is two-fold. I feel like such a jerk for judging people who were in real pain, because I know what that feels like now. And I feel like wuss for thinking that I need the vicodin. I have valid reasons to be on it, and I remind myself of that often, which just makes me feel like I'm justifying an addiction. I don't think it's an addiction yet, but it's definitely a dependancy. I have an extra vertabrae, and a buldging disk in my lower back, and all this pain that comes with The Mess, and something still unknown going on with the middle of my back. I have my very qualified Rheumy telling me to take 600mg of ibuprofen 3 times a day, along with the maximum dose of vicodin. But all of that still doesn't lessen the shame of using narcotics.

I think I'll feel guilty about it until the day I can stop taking them. I can't pick up my niece without taking vicodin, but I also wonder if I should be holding a baby while I'm on vicodin. I definitely can't take it when I'm at work, so I can only work maybe once a week, because of the flare the pain of a day without it sends me into. Lots of me wishes I had never started taking it. And lots of me knows that for right now, at least, I'd be absolutely useless without it. And lots of me thinks that if you guys can get through this AI business without narcotics, I should be able to too.

Man, I just spilled my guts all over the internet. Sorry internet; I'm probably high.

lovedbyHim
07-10-2011, 11:15 AM
Oh bless you Sharpie (grin). Your forthright words are balm to my soul! I know they are to many others who are reading this now. We all have judged others and had to step in their shoes. Thank God we ate never to old to learn, but even better when we share what we've learned. (((hugs)))

tgal
07-10-2011, 11:51 AM
Tammy, I'm so sorry you're hurtin' so bad. Distraction is definitely one way to go. For me it comes in the form of Netflix and Sharpies. I tend to spend a whole lot of time these days watching Lost and coloring. Sharpies really do save. . .

I've been avoiding talking about the pain aspect of this whole thing for so long because, well. . .because I'm ashamed of it. Sort of. And I'm also really defensive about it. It's complicated. Narcotics. That's how I deal with the pain. Vicodin. And boy, do I struggle with it.

When I worked in the ER we had so many frequent fliers and seekers. They knew which doctors would give them their drug of choice, and what those docs drove. They would scour the parking lot for their favorite doc's car, and come on in for their fix when they saw it. I should also mention that I worked there at a time when most nurses and docs were completely ignorant about fibromyalgia. I remember once asking a nurse what it was. She said, "It's a diagnosis for people who want drugs all the time." Idiot.

So my shame in taking narcotics is two-fold. I feel like such a jerk for judging people who were in real pain, because I know what that feels like now. And I feel like wuss for thinking that I need the vicodin. I have valid reasons to be on it, and I remind myself of that often, which just makes me feel like I'm justifying an addiction. I don't think it's an addiction yet, but it's definitely a dependancy. I have an extra vertabrae, and a buldging disk in my lower back, and all this pain that comes with The Mess, and something still unknown going on with the middle of my back. I have my very qualified Rheumy telling me to take 600mg of ibuprofen 3 times a day, along with the maximum dose of vicodin. But all of that still doesn't lessen the shame of using narcotics.

I think I'll feel guilty about it until the day I can stop taking them. I can't pick up my niece without taking vicodin, but I also wonder if I should be holding a baby while I'm on vicodin. I definitely can't take it when I'm at work, so I can only work maybe once a week, because of the flare the pain of a day without it sends me into. Lots of me wishes I had never started taking it. And lots of me knows that for right now, at least, I'd be absolutely useless without it. And lots of me thinks that if you guys can get through this AI business without narcotics, I should be able to too.

Man, I just spilled my guts all over the internet. Sorry internet; I'm probably high.

The first step to healing is voicing the words. You can now move on to a place of healing. We have all made judgements that we now know were not correct. Each of us do the best we can do and nothing more. Do not let guilt be another way that Lupus takes over your life. The guilt, like stress, can send us into a flare so very fast. Negative influences can wipe out all of the positive things we have worked for.

You are a lovely person who, like the rest of us, have been dealt a bad hand. You do what you have to do and know that we will always be here for you. Good times or bad you are one of our family now. Thanks for being so opened and never doubt that you are loved

Elo
07-10-2011, 11:54 AM
Swearing, mainly.
Well, really, I just let myself feel it. And I let myself get mad or sad or whine. For a while, and then I kind of just coach myself through it. It sounds ridiculous, but yes, I talk to myself in my head.
"Okay, we're okay, it's okay. Deep breaths. We can get through this, just one step at a time. It's okay. Oh ****.... **********er!!! Goddamn that hurt. Bloody ****ing hell. What the ****!!!!! A shrunken tiger is shredding my ****ing insides! GAHHHHHHRRRRRRRR.... "

And then it starts over again. Yes, I know it's weird that I refer to myself as "We" - it's like my mind is separate from my body, so combined, it's a "we". And yeah, I know, I have a dirty mouth. I used to rarely swear, (besides bloody hell, and bugger) but then I moved in with my boyfriend who's a complete sailor when it comes to that, and now i'm a lost cause.

The other thing I do is just let myself indulge. "I feel like crap and I want a cookie!!!" So I let myself have a cookie. Or three. Or a cupcake.

Sorry, I know those probably aren't helpful at all.

tgal
07-10-2011, 12:01 PM
Swearing, mainly.
Well, really, I just let myself feel it. And I let myself get mad or sad or whine. For a while, and then I kind of just coach myself through it. It sounds ridiculous, but yes, I talk to myself in my head.
"Okay, we're okay, it's okay. Deep breaths. We can get through this, just one step at a time. It's okay. Oh ****.... **********er!!! Goddamn that hurt. Bloody ****ing hell. What the ****!!!!! A shrunken tiger is shredding my ****ing insides! GAHHHHHHRRRRRRRR.... "

And then it starts over again. Yes, I know it's weird that I refer to myself as "We" - it's like my mind is separate from my body, so combined, it's a "we". And yeah, I know, I have a dirty mouth. I used to rarely swear, (besides bloody hell, and bugger) but then I moved in with my boyfriend who's a complete sailor when it comes to that, and now i'm a lost cause.

The other thing I do is just let myself indulge. "I feel like crap and I want a cookie!!!" So I let myself have a cookie. Or three. Or a cupcake.

Sorry, I know those probably aren't helpful at all.

LOL I cuss more also. I think it just feels Ok to cuss out Lupus! As for the "we" thing I didn't even notice it until you said something because I tend to do the same thing. I never thought about it until your post but I believe that my life consists of 2 parts.. me (and the things I love) and lupus (what my body will allow). So yes, I see myself as a WE ... See Elo? Not as strange as you thought eh?

Elo
07-10-2011, 12:09 PM
LOL I cuss more also. I think it just feels Ok to cuss out Lupus! As for the "we" thing I didn't even notice it until you said something because I tend to do the same thing. I never thought about it until your post but I believe that my life consists of 2 parts.. me (and the things I love) and lupus (what my body will allow). So yes, I see myself as a WE ... See Elo? Not as strange as you thought eh?
That's exactly it! It's almost like you - your brain, thoughts, personality, etc, and your body (under Lupus' stupid shackles), are two separate things. You've got what you want to do, and what your body will let you do, almost like you're battling it out.
Stupid Lupus!

rob
07-10-2011, 12:35 PM
Tammy, I'm so sorry you're hurtin' so bad. Distraction is definitely one way to go. For me it comes in the form of Netflix and Sharpies. I tend to spend a whole lot of time these days watching Lost and coloring. Sharpies really do save. . .

I've been avoiding talking about the pain aspect of this whole thing for so long because, well. . .because I'm ashamed of it. Sort of. And I'm also really defensive about it. It's complicated. Narcotics. That's how I deal with the pain. Vicodin. And boy, do I struggle with it.

When I worked in the ER we had so many frequent fliers and seekers. They knew which doctors would give them their drug of choice, and what those docs drove. They would scour the parking lot for their favorite doc's car, and come on in for their fix when they saw it. I should also mention that I worked there at a time when most nurses and docs were completely ignorant about fibromyalgia. I remember once asking a nurse what it was. She said, "It's a diagnosis for people who want drugs all the time." Idiot.

So my shame in taking narcotics is two-fold. I feel like such a jerk for judging people who were in real pain, because I know what that feels like now. And I feel like wuss for thinking that I need the vicodin. I have valid reasons to be on it, and I remind myself of that often, which just makes me feel like I'm justifying an addiction. I don't think it's an addiction yet, but it's definitely a dependancy. I have an extra vertabrae, and a buldging disk in my lower back, and all this pain that comes with The Mess, and something still unknown going on with the middle of my back. I have my very qualified Rheumy telling me to take 600mg of ibuprofen 3 times a day, along with the maximum dose of vicodin. But all of that still doesn't lessen the shame of using narcotics.

I think I'll feel guilty about it until the day I can stop taking them. I can't pick up my niece without taking vicodin, but I also wonder if I should be holding a baby while I'm on vicodin. I definitely can't take it when I'm at work, so I can only work maybe once a week, because of the flare the pain of a day without it sends me into. Lots of me wishes I had never started taking it. And lots of me knows that for right now, at least, I'd be absolutely useless without it. And lots of me thinks that if you guys can get through this AI business without narcotics, I should be able to too.

Man, I just spilled my guts all over the internet. Sorry internet; I'm probably high.

That's some raw, and brutally honest stuff Sharpie. It's good to get it out. No need to apologize to the internet. (or anyone else for that matter)

Tammy and T-gal really know their stuff, so there's not much I can add for advice. Just know that nobody is going to judge you here. Be as raw as you need to be.

Rob

sharpiessave
07-10-2011, 12:54 PM
Yeah, I didn't intend to get that hardcore in my reply. The realness just started pouring out of me. And then my finger hesitated quite a bit, hovering over the Post Quick Reply button. Now I feel slightly embarassed, and yes, pretty raw. Feels kinda like waking up from a 'naked at school' dream.

But thanks, all of you guys, for being awesome enough for me to open up that much to. In that moment of finger hesitation I remembered who I was sending the post out to, and that made it ok to click. This is the best group of people ever to gather on the internet. Honest.

rob
07-10-2011, 12:59 PM
It takes guts to open up. Nothing embarassing about that.

lovedbyHim
07-10-2011, 06:37 PM
It takes guts to open up. Nothing embarassing about that.


This says it all! I was raised with 4 brothers who's favorite pastime was to torment me. I was also sexually abused by a neighbor. I learned to be very tough and resilient. Admitting that I could not keep up in many areas of my life, was truly humiliating. Admitting that the pain has me sometimes, is rather embarrassing. But that is the beauty of this forum, people are honest and raw. That's because we know we are safe in each others care. Beinging humiliated and powerless is worse than death for me, but this disease has forced me to revisit this place(humiliated & powerless) in my wounded soul. What is the quote, " Sometimes you have to go through something in order to get over it." I believe there is only strength & power in being raw. Thank you all for your honesty.

tgal
07-10-2011, 06:43 PM
This says it all! I was raised with 4 brothers who's favorite pastime was to torment me. I was also sexually abused by a neighbor. I learned to be very tough and resilient. Admitting that I could not keep up in many areas of my life, was truly humiliating. Admitting that the pain has me sometimes, is rather embarrassing. But that is the beauty of this forum, people are honest and raw. That's because we know we are safe in each others care. Beinging humiliated and powerless is worse than death for me, but this disease has forced me to revisit this place(humiliated & powerless) in my wounded soul. What is the quote, " Sometimes you have to go through something in order to get over it." I believe there is only strength & power in being raw. Thank you all for your honesty.

Beautiful, wonderful words. That really is the beauty of this place. We don't have to put a show on for anyone. What is more wonderful then that?

Gizmo
07-10-2011, 09:49 PM
Narcotics do carry their own nasty form of guilt and shame, and I think it is really sad. I worked as an RN and remember the stigma we placed on (some) people who took narcotics. It seems like it is acceptable if you are dying or just had surgery, but if you are in terrible pain every damn day of your life, you don't deserve relief! Who made up those rules? People who've never known real pain. I took my daughter to a pain doctor and he kept talking about how much HIS knee still hurt after HIS arthroscopic surgery and then belittled her because of her knee pain. We gave him a second chance and he told her that it would be better for her to get hit by a train before her 19th birthday than for her to take narcotics. He treated her like a drug addict and she walked out.

Sharpie, there are long acting forms of morphine that you only take once a day - but you can also take short acting doses for breakthrough. Exalgo and Opana are the options. I'm not pushing narcotics, but if you need to take them to keep up with life, then the long acting ones are an option. They are less sedating, and don't have the stigma of Vicodan. I have seen the difference adequate pain relief makes in my daughter's life. I recently read an article in a nursing magazine that talked about how people who take narcotics for chronic pain aren't addicted. They are dependent on the drug and can't stop it abruptly, but it's a physical issue, not a psychological one. It also talked about how people who need narcotic pain meds don't get "high" like they would if they didn't have chronic pain. I need to find the magazine and re-read it, but that's the general gist of the article. The good news is that the NIH has acknowledged that doctors in the US don't do a good job of managing pain. The good news being that hopefully more research and education will go into treating chronic pain.

So much for a "quick reply." Maybe there needs to be a box for "long reply." LOL

dawn patrol
07-10-2011, 10:02 PM
Earlier this week I could've drowned. For real. The sun and sky disappeared and I was tumbling in a washing machine of darkened water without knowing which was was up. After what felt like an eternity when I finally popped up, lungs bursting, I realized my feet were cut from the reef, my skeg cut my thigh and now I have several new bruises. However, I'm still here! The pain reminded me to be thankful for all the wonderful things in life..and days I don't get hurt.. I couldve been under another goshdarned minute and blacked out and not been here writing this today. Im lucky just to have a few scrapes, bumps and aches.
When it comes to the RA- the pain is constant, Im on painkillers all the time. I can't live without ibuprofen, need to take the edge off. Sometimes I do feel irritated but try to distract myself with music, exercise, reading, last resort- stronger pills and sleep- just being honest here.
I saw something beautiful this week- a pair of Hawaiian monk seals on the beach. They're endangered, about 1200 left. Most people have never seen them in the wild. I feel privileged have enjoyed their company and wanted to share them with you (my new avatar).

steve.b
07-11-2011, 03:26 AM
when my wife was having "severe" back pain, she was prescribed "durogesic" patches.
these are slow release pain meds, each patch lasts for 3 days.

this is acceptable for temporary relief. her docters let her stay on these for a couple of months only.

she was not allowed to stay on them permanently.

people do not understand perminant pain.......
government departments are set up to stop addiction, but not to help pain sufferers.

need2kno
01-26-2012, 05:10 PM
As a Canadian, and one who lives in Vancouver, I seem to be living in a part of the world that is open to alternative medicine.

With the chronic cluster migraines, the body pain and nausea I experience, T3's, morphine, Advil and regular Tylenol have gone from being marginally effective to effective at upsetting my stomach.

I have looked for alternate methods of pain control. The usual massage, acupuncture, accupressure, yoga and the like. Another migraine friend of mine told me her doctor recommended she try eating TLC (medical marijuana) or using a tincture and found she had excellent results without the awful side effects from the big narcotics. I was really hesitant to try this, even though it is legal with a prescription here, but after watching a few documentaries on the subject I spoke to one of my DR's. He agreed it was a good idea and that I was an excellent candidate. I have to say that using small amounts of THC in food has changed my pain management regiment forever. My muscles are relaxed and my pain feels like it lives more on the front step than in my house. My GFR has come up 20 points in the last two months since I began. Certainly this is not a cure all, but it might be worth looking investigation for those who are in areas where they have the option.
I apologize if this ruffles any feathers, my intention is only to share my own experiences.
Hope each of you reading this are well and pain free today
xx
Holly

tgal
01-26-2012, 05:35 PM
As long as the topic stays on pain management and not fixing or curing lupus with these unapproved methods this post is fine. If, at any time, this thread goes over the line and begins to give alternative cures for Lupus this thread will be locked. Please make sure to read all the stickies (at the top of each section) about what is, and isn't, allowed in WHL.

~CJ~
01-27-2012, 07:32 AM
This has been a great read, but also a sad one. The reality of needing long term pain relief and what that involves...is something I never thought I would have to face myself. My sister (who suffers similar but perhaps heightened symptoms I do) has been on such strong medications for years that she has been treated as nothing but a pathetic drug abuser. That is the reality! Does anyone offer LONG term solutions? NO. Short term yes possibly, but then things should just magically "fix" it seems!

I am on Endep, a slow release daily medication to reduce nerve compression/ inflammation. It was originally prescibed for those with depression...so I was very reluctant to use it thinking "i'm fine!" but it has helped SO much. I suffer incredible pain due to compressed nerves and migraines. I thought was all fine but now i'm on endep OMG the difference...I just can't describe! I take medication for break through pain maybe a couple of times a week...not every DAY like it used to be. I have had to up the dosage a couple of times...and still play with it trying to bring it down every now and then (I have a bit of a thing about taking drugs due to a family member with a serious drug addiction...so I dont handle taking daily medications easily)....but think i'm finally accepting this is one of the drugs i'm just going to have to take daily. it's been I think 3yrs now since I first started it. Off i'm a complete mess, on I cant function, if not normally.

I hope you can fine some balance and that maybe this is of help, though I know each drug works differently for different people

~CJ~
01-27-2012, 07:41 AM
just thought I should add given the post above...i'm not suggesting in any way the drug I have been prescribed would help or cure Lupus! It has helped me deal with some of my issues with pain only...legally here within Australia...and by no means does it provide any more. Wish it did though...who wouldn't :)

rob
01-27-2012, 10:45 AM
There are two people in my MS support group who use the legal prescription grade medical marijuanna (THC) for neuropathic pain, and they say it works wonders. If my own pain from peripheral neuropathy stopped responding to the meds I am currently on, I would not hesitate to ask my Neurologist about getting a prescription for MM.

Also, if MM works on nerve pain from MS, it's a distinct possibility that it could also help with nerve pain caused by CNS Lupus, as the pain mechanism is nearly identical for both. It's something to consider talking to your rheumo/neuro about if needed.

Rob

tgal
01-27-2012, 11:21 AM
just thought I should add given the post above...i'm not suggesting in any way the drug I have been prescribed would help or cure Lupus! It has helped me deal with some of my issues with pain only...legally here within Australia...and by no means does it provide any more. Wish it did though...who wouldn't :)

No need to add that! We understood. I just wanted to put that in before there was an issue. We all want to know things that people have tried that have helped the pain! Curing is very different than "dealing with" and that is what you were talking about

tgal
01-27-2012, 11:23 AM
There are two people in my MS support group who use the legal prescription grade medical marijuanna (THC) for neuropathic pain, and they say it works wonders. If my own pain from peripheral neuropathy stopped responding to the meds I am currently on, I would not hesitate to ask my Neurologist about getting a prescription for MM.

Also, if MM works on nerve pain from MS, it's a distinct possibility that it could also help with nerve pain caused by CNS Lupus, as the pain mechanism is nearly identical for both. It's something to consider talking to your rheumo/neuro about if needed.

Rob

Not an option for me. It is still illegal here. It seems if they are going to allow narcotics for pain management that MM should be allowed as well. *shrugs* but who am I

need2kno
01-27-2012, 04:46 PM
CJ,

I totally hear you. Not only do I use MM as part of my pain management regiment but I am also on a slew of other meds including Cymbalta, Trazadone, Wellbutrin, Topamax, and various inhalers. Much of this may change as my diagnosis is in the process of being dialed in. At this point, even though I have some relief my functionality is very low.

Truly my heart goes out to you sincerely. I find that it is easy for me to get into a "Hurry up and Wait" mentality. What will the next drug do, the next test show, the next doc say. Sometimes it helps me to stop for a moment and pat myself on the back, be grateful for tenacity.

So today i will be grateful for the tenacity of us all ~

Hugs and encouragement


This has been a great read, but also a sad one. The reality of needing long term pain relief and what that involves...is something I never thought I would have to face myself. My sister (who suffers similar but perhaps heightened symptoms I do) has been on such strong medications for years that she has been treated as nothing but a pathetic drug abuser. That is the reality! Does anyone offer LONG term solutions? NO. Short term yes possibly, but then things should just magically "fix" it seems!

I am on Endep, a slow release daily medication to reduce nerve compression/ inflammation. It was originally prescibed for those with depression...so I was very reluctant to use it thinking "i'm fine!" but it has helped SO much. I suffer incredible pain due to compressed nerves and migraines. I thought was all fine but now i'm on endep OMG the difference...I just can't describe! I take medication for break through pain maybe a couple of times a week...not every DAY like it used to be. I have had to up the dosage a couple of times...and still play with it trying to bring it down every now and then (I have a bit of a thing about taking drugs due to a family member with a serious drug addiction...so I dont handle taking daily medications easily)....but think i'm finally accepting this is one of the drugs i'm just going to have to take daily. it's been I think 3yrs now since I first started it. Off i'm a complete mess, on I cant function, if not normally.

I hope you can fine some balance and that maybe this is of help, though I know each drug works differently for different people