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Below are the 20 most recent journal entries recorded in Got Pain?'s LiveJournal:

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Wednesday, May 7th, 2008
9:39 pm
[l_is_for_lupus]
Welcome!
L is for Lupus, an online directory of reviews and recommendations for patients by patients, has officially gone online today.

Bear in mind, this is just the beginning. This site will not be limited to just lupus-related material. I've begun to include Fibromyalgia books and websites to review, and I hope to include other auto-immune diseases as well.

I'm very excited to be ahead of schedule! Please help get this started and write some reviews! Your opinion will help others research their auto-immune disease. I hope to see you there!



Tuesday, April 22nd, 2008
10:00 am
[l_is_for_lupus]
L is for Lupus - reviews+recommendations
Beginning May 15th, 2008, L is for Lupus will be an online directory of reviews and recommendations for lupus patients by lupus patients. An online community/bulletin board is also in the works.

L is for Lupus is currently seeking submissions for books and other items to review. We're not ready to accept actual reviews just yet--that will begin on May 15th. If there's something you would like to see reviewed on L is for Lupus, please let me know by posting below or send me an e-mail!






L is for Lupus on MySpace
L is for Lupus on Twitter
L is for Lupus on Facebook
L is for Lupus on LiveJournal



Tuesday, January 23rd, 2007
9:06 pm
[pickleboot]
questions.
hi there.

i know that this comm hasn't been the most active of late, but i am hoping that someone here can talk me through what i am going through. i started, if i am going to be honest with myself, having a lot of numbness/loss of feeling/loss of strength on my left side in april. of course, i get basilar migraines mixed in with the noraml intractable ones, and wrote it off to a bad migraine.

apparently, though, i was wrong. i finally went in to see my pcp about it in december, right before the holidays, and have been seeing a whirlwind of specialists, tests, and scans since. i have had an mri, an mra, have an emg scheduled, as well as know that at some point they want me for two days of testing in hospital. lovely.

so- there are three working theories. one- it is ms. two- it is als. three- it is some sort of neuropathy of unknown causes. what i do know is that it is pretty obvious that prednisone is not making it better, but that neurontin might be keeping it where it is and from getting worse. i am in near constant pain from the burning/ntingling/awful lightning flashes that go through my left leg and arm, and now my left side of my trunk and face. lovely, huh?

does anyone else here have ms and is willing to talk to me about it? or als? or just some funky neuropathy? i have pt and ot scheduled, as well as a few visits with a therapist to work through my loss of mobility- it is freaking me out that i cannot knit or spin easily, or type, and i am a professional blogger.

so there it is. any other questions, ask away, and i hope that the rest of you are having a good day.
Thursday, November 2nd, 2006
8:47 am
[woolly_socks]
BORED!
Hey there. I am home sick from work again. I'm lucky, my boss is really good about absences. Last time we talked about it she even instructed me to stop worrying about it so much.

So the thing that is getting to me the most right now is that I am so f***ing bored of being at home. I'm sick of naps, sick of reading, sick of watching DVDs. How do you guys cope with the boredom of being chronically ill? How do you fill the endless restful hours? It's driving me nuts.

I've been sick for about 8 years. Mostly with Chronic Daily Headache and migraines, but more recently (the last couple of years) with chronic fatigue as well. I used to just push through the pain, which is probably how I ended up so tired. Recently I've been learning to listen to my body and slow down. So far, so good. Except for the boredom. All this resting is running at odds with my personality, it seems.

LJ helps, but I can't stay on the computer too long because it makes my neck and shoulders too sore.

Current Mood: bored
Monday, September 11th, 2006
4:40 pm
[woolly_socks]
Bowen technique and Botox for migraines
Hi, I posted a while back about Bowen technique and ages ago about Botox for my chronic migraines. I recently came to suspect that the Botox was making my chronic fatugue worse, so I quit the treatment.

And now I've started feeling a lot better, fatigue-wise anyway. So I thought I'd keep y'all posted in case you are considering either of these two treatments. Basically I've broken my own rule, by changing more than one thing at a time (quitting Botox and starting Bowen) so it's hard to know what has caused the improvement. But being a science-girl, my money is on the Botox getting out of my system.

My anaesthetist, who was administering the Botox, said he had not heard of Botox causing fatigue. But I noticed I felt even more tired than usual after each treatment, and my general fatigue levels definitely got worse not long after I first commenced the treatment. So, this is anecdotal, obviously, not clinical data, but keep it in mind if you are considering Botox treatment.

I certainly don't regret it though. I've had the injections every six weeks for a year, and the improvement in my myofascial pain syndrome (a major migraine/tension headache trigger for me) has been HUGE. My shoulders now feel like real shoulders, instead of blocks of wood. It's just been a harder road than I expected. I had no idea it was possible to feel this tired.

Maybe only some people have this reaction to Botox, which is why there is no clinical data on fatigue as a side-effect.

As for the Bowen, well, the jury is still out. It doesn't necessarily not work! But it's (surprise!) not a miracle cure for migraines.
Wednesday, August 23rd, 2006
3:14 pm
[woolly_socks]
Bowen technique
Hi.

Has anyone tried Bowen technique for migraines, tension headaches or chronic fatigue? I just had some treatment. It's a little weirder than I'd usually go for, but I am trying to keep an open mind. Anyone had experience with this treatment?

x-posted to migraines
Tuesday, August 8th, 2006
2:46 pm
[singingnymph]
lookat what I found
Fibromyalgia forDummies
http://www.amazon.com/gp/product/0764554417/sr=1-144/qid=1155073397/ref=sr_1_144/002-1102757-9922444?ie=UTF8&s=books
Complete Idoiot's Guide toi Fibromyalgia
http://www.amazon.com/gp/product/1592573673/ref=pd_sim_b_4/002-1102757-9922444?ie=UTF8
Migraines for Dummies
ttp://www.amazon.com/gp/product/0764554859/sr=8-1/qid=1155073727/ref=pd_bbs_1/002-1102757-9922444?ie=UTF8
Complete Idiot's Guide to Migraines and Other Headaches
http://www.amazon.com/gp/product/0028639464/sr=8-1/qid=1155073745/ref=sr_1_1/002-1102757-9922444?ie=UTF8

Have any of you read any of these books? What are your thoughts?

*HUGS*
Saturday, June 24th, 2006
1:13 pm
[woolly_socks]
Botox treatment for migraines
I've been having Botox treatment for my chronic migraines and tension headaches for the past year. I've had some great results, but I have recently come to suspect that it has made my chronic fatigue worse. The evidence is only circumstantial, i.e. the fatigue got worse around the same time I started the treamtment, and I always feel a lot more tired in the days directly following the Botox injections, but I thought it was worth sharing in case anyone is conisidering a similar course.

My anaesthetist says he has never heard of fatigue being a side-effect, and I can't find anything much supporting the theory online. I'm quitting the treatment, and will just wait and see if things start to improve, fatigue-wise at least.

x-posted to chronic_pain
Monday, June 19th, 2006
8:31 pm
[pickleboot]
a request
hi.

i am nicole, i am a stay at home mom with chronic pain- in the form of chronic intractable migraines.

i am speaking at the mama gathering 2006 on invisible illnesses.

to prepare, and send people home with a fairly good idea of what to read up on, ideas for relief, and all that, i am turning to a few lj and non lj communities to share favorite books, tips, and advice for dealing with all forms of invisble illnesses- you look fine, you must not be sick. sure, right, ok.

anyways, if you are not comfortable commenting here please feel free to email me at pickleboot@livejournal.com.

for those interested, mama gathering is in cleveland ohio aug 4-6 this year. there is a link, but my brain broke.

thanks, and hope everyone is having a good and relatively pain free day!
Saturday, May 20th, 2006
8:07 am
[woolly_socks]
My best friend used an analogy for my chronic headaches last night which I thought was quite apt, though unflattering to children....
Saturday, May 6th, 2006
11:38 am
[pickleboot]
hey tired girls
it's been a while since i updated anyhting here.

i got put on ms contin for chronic intractable migrianes, the now more official diagnosis that cdh, simply because my pain levels are so much higher, unmedicated. so that is helping.

and then i went and got a concussion. which has sent me into this odd spiral of exhaustion, pain and dizziness. i have been exhausted for the past few days since it happened. oh well, it could be worse.

so i am waiting to hear from mayo clinic neurology to se if i got accepted in their program. that is the nice thing about being in minnesota, all health insurance covers the mayo. nice.

hope everyone is doing well!
Thursday, March 23rd, 2006
6:17 pm
[woolly_socks]
Botox for chronic headaches and migraines
Hi.

In the interests of sharing info and comparing notes, I just wanted to let y'all know that I have had some very good results from Botox injections for my chronic headaches and migraines. It has by no means been a quick fix, rather a long-term solution that has taken a lot of work, along with other lifestyle changes and therapies. But after 8 years of pain, I feel like I am finally on the path to recovery. Some details are at my journal, and I am very happy to answer questions about my treatment(s).
Wednesday, March 15th, 2006
10:37 am
[jesshiva]
i am taking a class at my college where they were talking about pain management today.

The professor said that serotonin can cause pain where no actual tissue damage is present and the pain can last long after the chemicals are gone.

i know this all too well. my pain and tiredness began when i took SSRIs years ago. all of the doctors i have seen deny that SSRIs could have adverse effects. I have been taking muscle relaxers that don't really help my pain a lot, but make me sleep and make it harder for me to wake up in the morning.

i e-mailed her and asked her opinion about what could help with this since the doctors are either less educated than a part time undergrad professor or total assholes and i will let you know if she has any insight. doctors prescribe SSRIs to just about everyone now, so i am willing to bet that this is not only relevant to me.
Sunday, March 12th, 2006
11:00 am
[pickleboot]
great
hi there.

i am having a really bad week. mainly because the wonder drug that was keeping me pain free is now making me itch like crazy.

the worst part? as i am weaning myself off of it, the pain is coming back. it's kinda peeking through now, but it's there. and i am so, i don't know, despondant? depressed? angry? that it is coming back.
thanks for listening. i am hoping i am not doomed to a life in pain, but that is what it feels like now.
Wednesday, March 8th, 2006
10:23 am
[eoywin]
Pets and Kids - x posted to a few groups
I'm pretty lucky when it comes to my daily chronic headaches. Yes, I'm in pain all day, every day, but I can manage enough that I can lead a mostly normal life.

I am a bit worried, because my husband and I recently adopted a dog and a cat (we haven't brought them home yet), and I'm not sure how I'll be able to handle pet ownership.

I try to be normal, but when my headaches get really bad, there is nothing I can do, because no medicine I've tried works. I don't want to neglect our pets because I'm having a headache attack.

Plus, we are thinking about having kids in the next couple of years, and I have the same concerns as above, but on a bigger scale.

For those of you with chronic pain/migraines, how do you handle pets or kids?
Wednesday, February 22nd, 2006
10:39 am
[jesshiva]
aHahaUhuAaUGH! wakey medicine is not supposed to numb your tongue for hours if it accidently breaks open in your mouth!

that being said, i just joined this community. i take muscle relaxers at night if i have enough time that i am able to sleep them off and Cymbalta in the am, which is decreasingly effective. i'm extremely allergic to SSRIs, though i am told that Cymbalta has somewhat of a serotonic effect, apparently it is masked enough by the other actions- ::checks- no comas yet::

so, ROLE CALL!

whatchu on & how's it working out for you? anonymous is fine, i'm just wondering if there's something else out there that might be better.

Current Mood: tired! *hee hee*
Tuesday, February 14th, 2006
4:06 pm
[ldegoth]
hiyas
i'm a 16 year sufferer of headaches. my most recent doctor i will say at least tries.
my headaches in general last at least 24 hours. more towards 3 days. so my doctor tried a bunch of meds that last 24 hours. the only one that may have worked was the flova..but by the time i would take that it was time for me to drift into the sick headache
now she has me on beta blockers...lord to say i'm a bit drifty is a major understatement.i did fight the whole thing of being on daily meds for years. (with the exception of birth control).
does anyone else take beta blockers? and if you have..does half a dose work?(not liking the drifty stoner feeling)
Sunday, February 12th, 2006
10:03 am
[bramey]
Cymbalta aftermath?!?
Hi guys. Thanks to those of you who sent encouragement to me on last Friday, when I went to the ER with chest pains. No one said it directly, but the fact that they gave me Ativan sort of says it for them - it was probably an anxiety attack on top of an Imitrex + high blood pressure = chest pain kinda thing. (this is from the migraines posting. . . I'm cutting the rest for those of you getting double exposure)Collapse )
Sunday, January 15th, 2006
6:08 pm
[woolly_socks]
Vitamin B vs PMS
Hi, I'm Eleanor. By way of introduction, I'm 30, a part-time designer, I suffer from Chronic Daily Headache, an Anxiety Disorder, Dysthymic Depression, and, of course, Fatigue with a capital F. But I consider myself one of the lucky ones, I am able to work, part-time at least.

I wanted to share a new discovery, in the hopes that it might help some of you out there. It may be old news to some!

I get wicked, evil PMS. And as you either know or can probably imagine, chronic pain and illness are hard enough to cope with, without adding anything else to the mix. My main PMS symptoms are severe anxiety, which I am prone to anyway, depression and insomnia.

So anyway, some time ago I started taking a vitamin B supplement, which made a huge difference. I had no idea quite how much difference, until I stopped taking it a few months back. (Isn't it funny how quickly you can get used to relief?!) I ran out, and I was taking so many other supplements and medications that I put off buying more. And then I forgot about it. Not long afterwards, I was beset by the worst PMS I'd had in years. Frequent panic attacks, dreadful insomnia, and I'd often burst into tears for absolutely no reason. I thought hard about what might eb going on, and realised that the only thing I'd changed was stopping the vitamin B. So I bought some more, and next cycle, the PMS had down-graded significantly, and was once more pretty darned manageable. Not great, but manageable.

So if you get PMS, and haven't tried vitamin B, I'd recommend giving it a shot. I don't know if there are any contraindications, I guess check it out if you are not sure if it's OK to take supplements along with with any meds you are on.
Tuesday, January 3rd, 2006
4:28 pm
[swillyjilly]
Hi, I'm Jill.

I wanted to tell you guys about a new community i JUST created called untreated_pain


I have had pain for 10 years, I have been through many many months of physical therapy, 2 sugeries and delt with several disrespectful doctors. I often feel suicidal as I am so frustrated that I can not get rid of this pain and I cant seem to find a doctor to help me!

I have recently encountered many people here on LJ who suffer from chronic pain are are untreated because they are young or have an alternative look (tattoos, piercings dyed hair etc)or just because they dont have health insurance.

so if this interests you please come join my community, share your story, and help me get people organized so that we can get treated and be pain free!
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