Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I Think This Camel's Back is Broken

Thanks guys, it feels good to be clear headed. Seems like forever since I last felt this way.

Hugs,

Kat

Hi Kat...
I do hope that you get to feeling better soon. That really is dissapointing that you cant take the codeine with the other med. I was pulled off Bextra after a reaction and now I am having to wing it on soma and ultracet I got an okay yesterday. But it's not touching the pain. Then my insurance co pay went up. I USED to pay 20.00 copay for my one month supply for ultracet. NOW it's 40.00!! I couldnt believe it. I know alot of folks have to pay much more but I was still shocked at the increase in one year.

When do you go for your sleep assesment? let me know how it turns out...
you are in my thoughts...
gentle hugs]]]


Buggy

Kat-

You might be interested in reading this article that just came through on the about.com website today (11/19/03)

http://arthritis.about.com/cs/depression/a/treatdepression_p.htm

Hope it's helpful or, atleast informative.

Best,
Michael

Hey Buggie, actually I'm finding that the Celexa really is helping a great deal with the pain. It's not total, and I'm still using the Tylenol Arthritis once or twice a day, but it's better.

My sleep study is scheduled for December 9. I was told I couldn't take the Tylenol 3s for two days before hand. That's not an issue at this point. However, because the Celexa is also a pain killer, I may have to come off that for a few days. They're going to call me and let me know if I have to come off it.

I'm so sorry you've been in such pain, Buggie. And what a shock about your deductible! Holy Crow!! I hope you find some relief soon.

I'll let you know how it all turns out.

Many hugs,

Kat

Max, that's a very interesting article. Thanks for posting it. We all know that our pain affects our moods. We also all know that our moods can influence our pain levels. If anti-depressants do contain a pain killing element, which I'm now coming to suspect, it would make sense that it would help to the extent cited in the article. Hell, just dealing with the depression would make a difference.

I've committed to a year on these things, so I'll be very interested to see where I am a year from now as far as my pain levels are concerned.

Hugs,

Kat

Hi Kat,
sorry to hear you are feeling so bad. i'm having a rough time of it too. for pain, i have a fentinyl patch. it is a drug similar to morphine. i know it sounds scary, but when you are in this much pain, you do need strong pain meds. it does help and dosen't make me feel drugged. i do however have a problem with nausea, but for others, that doesn't last. i have other stomach problems.

along with the fentinyl, i have flexeral for muscle stiffness, neurontin for nerve pain and ultracets for breakthru pain. i take wellbutrin, but other lyme friends take celexa and like that one. the anti-depressents help with the pain and exhaustion. there is a new anti-depressent called lexapro that is derived from celexa. that is a good one too.

depression is a lyme disease symptom also. it is caused by the bacteria infection. it was the first lyme symptom i got. had the depression/sleep problems yrs before major pain kicked in. just did not know that lyme caused all those things.

FIBROMYALGIA DOES NOT EXIST!!! that is what i was dx with even after i had a pos lyme test i was told i did not have lyme, i had fibromyalgia. FM just descrbes the symtoms and most of the time it is lyme/tick borne infection. you do have lyme in cananda! even if the drs say you don't. so much of what you describe sounds like what i have. i can't emphasize more that folks here need to be seen by a lyme literate medical dr. AS can very well be caused by lyme. rheumies are usually the worst to go to if you have lyme. neuros and infectious disease specialists are also usually bad. even if you have symtoms that scream text book lyme they tell you you don't have it. and they seem to love the FM / auto-immune dx. there is a connection between AS and fibromyalgia, because there is a connection between AS and lyme/t.b.d. and fibromyalgia is usually lyme disease and/or coinfection(s).

please take me seriouslly. i've been thru hell with drs and mis dx's for yrs before finding out how common lyme is and that i got it many times thru the yrs, had text book symptoms and yet got no med care until getting to a lyme literate dr. the two excellent websties i reccomend are www.lymenet.org and www.wildernetwork.org please go tot these websites for info and also for help finding a dr. there are several people from cananda on the lymenet site and a section "seeking a doctor" where people will help you find a lyme literate dr.

sorry to sound so abrupt. i am very nausious now and had to take a break and go to the ladies room to throw up and fear i am giong to get sick again.

Caryn, thank you for posting this. I'm checking out the website you posted. However, I don't recall ever having had a tick bite. I'm curious, and please don't think I'm rejecting what you say, but I don't accept anything at face value anymore, OK?

I'm curious as to how long the symptoms of lyme last, or perhaps more precisely, how long lyme presents. For instance, I showed my first signs of AS back in high school. And as for depression, I don't remember a time when I didn't feel some sort of depression at some point. So we're looking at, at least, 30 years of history here. Of the entire list of symptoms on the lymenet website, those are the only two that stand out.

So, while I appreciate the information and will continue to look into it, please understand that I am going to continue to look at fibro (and other potential causes) when it comes to the 'extra' pain I'm feeling. My rheumatologist thinks it's a possibility and since I'm only just now starting to get to know him and realize how very thorough he likes to be about things, I'm not ready to reject his opinion on this. I will, however, raise the idea of lyme with him and see what he says.

Thanks again, Caryn. I do very much appreciate you posting this.

Hugs,

Kat

Hi Kat,
at library right now and it is about to close. not doing too well and this will be a long response. maybe i will be able to tommaorow. i rejected the idea that i had lyme when people started telling me i had it. did not remember the tick bites either. turns out i do have photos of me with bullseye we took unwittingly. i may have been born with it, my son was. know i was reinfected several times. it's becoming increasingly clear that it is a sexually transmitted disease. affects us all differently. my daughter only had behavior problems from it. straight A student, gifted athlete. and she had it at least since she had the "flu" as a 9 mos, old nursing baby and just after i got bit. my husband thought he was healthy as an ox, but once i knew what it was could see he has it. his PCR came back pos, tests directlly for DNA, no question he has it. first got it 20 yrs ago from a mosquito bite and told viral encephalopathy. i'll try to write more soon.

Hi Kat

I am so sorry that you're in such pain. I am too,and it's too horrible to even explain, at times.

I've been on 150 mg of Amitryptyline-Anti-D ( at bed) for 6 or 7 years now. It works with your own pain receptor biology, and can be used indefinately. It treats Depression/Pain/Insomnia- I wouldn't sleep much without it. It does have some side effects, but despite lots of effort, I've been unable to find anything else as effective for the above, period.

When the pain is at its worst, I take 20 mgs Oxycodone, + must go to bed, day or night.when I wake up. inevitably, things are better-pain + restored energy wise. its a Godsend for severe pain, on bad days. I' ve also added fish oil supps (Pacifac Salmon oil), and an Omega 3-6-9 blend, which has improved "well-being" somewhat. Please e-me anytime, for follow up info , or to chat. I'm praying for you. Hang in there, Kat

Love Brian



Rose lipped maidens...lite footed lads

Thanks Brian. I'm sorry to hear that you're in such pain yourself. Man this disease sucks. I'd thought the anti-depressant was helping with the pain. I actually didn't need my tylenol arthritis for a few days. But it's back now, so I don't know what's going on. Gonna have to start on the tylenol again. At least it's not as bad as it was.

Hope you get some relief soon.

Hugs,

Kat