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

OK, so I've been on the vioxx for a month now and have noticed some good things. I have increased mobility (chin to chest for the first time in MONTHS, able to do full child's pose in class for the first time in MONTHS, no longer feel constricted in breathing). However, I'm still in massive amounts of pain to the point that I now have, as I've mentioned, tylenol 3s in my arcenal, but even they don't always cut it. Now, I would have thought that the vioxx would have taken care of a fair bit of the pain, maybe not all, but a fair bit of it.

So, I go to the rheumy yesterday and find out that my bone scan (taken 2 weeks into the vioxx, so the vioxx had had a chance to start working) has come up completely clear of inflammation. Completely Clear. No abnormalities.

So why am I still in such huge amounts of pain?

I've been wondering that and asked my rheumy if I might have fibro on top of the AS. So he asks me about sleep patterns and whether I feel rested in the mornings. Well, my blankets end up on the floor and no, I don't feel rested in the mornings. He checks out my tender spots (whatever you call those things they check for fibro) and I nearly go through the roof on a few of them. He couldn't believe my reaction was so strong and actually asked me if it really hurt that much.

So, now I have to go in for a sleep assessment, because apparently restless sleep (which I've had since childhood) is all a part of FM.

So I go to my psychiatrist this morning, having decided that I'm finally going to break down and ask for an anti-depressant to help me get through. She's so happy to hear this, because she's been suggesting them to me for ever and finally, I'm willing to take them.

I tell her about the possibility of fibro along with the AS and her first reaction is that fibro is the illness du jour and to tell me that she doesn't think it's fibro. She thinks that my excess pain is being caused by the fact that I'm depressed and am experiencing extreme muscle tension as a result. Once I've been on the anti-depressant for a while, the pain will go away and I'm to stop taking the tylenol (in any form) in the meantime.

Now, I recognize that our emotional state has a direct effect on our physical state. I also know that my physical state has a direct effect on my emotional state. The two go hand in hand. I'm willing to accept that at least some of the pain I'm feeling is caused by the depression. But there's no way that the intense pain I've had even since going on the vioxx is caused by depression. There's no way.

I'm at the end of my rope. I'm going to see my naturopath hopefully on Saturday so we can come up with a plan of attack on the side effects of all these chemicals that I'm suddenly inundating my system with. And I know she's going to give me a hard time about them. My rheumy says one thing. My psychiatrist says another. I don't know who to believe anymore. All I know is I feel like I'm breaking in two and I'm scared and about ready to hit a loony bin, cause that's where I belong right now. I'm sitting at my desk trying to go about my day, but I'm crying which I haven't done in months. I haven't allowed myself to because I knew that if I started I'd have trouble stopping. Well, I started this morning and now I'm having trouble stopping.

I don't know who to listen to anymore. Everyone has their own opinion about what I should be doing and what's wrong with me and who do I listen to? I can't take the anti-depressant while I'm on the tylenol 3s, 'cause it isn't a good mix with codeine. Great. So I'm supposed to not take anything when I'm ready to rip my skin off from pain?

What do I do.

I'd better stop, I've got typing to do and I have to get through this day somehow.

Kat

Hi Kat,

Sorry that you are feeling so low, sounds similar to what I went through a few months ago. You are very valuable to Kickas and we do not want to lose you, so if you need help do not be afraid to seek it.

You will need to listen to yourself and what to do, everyone has opinions with what is the correct course of action.... but only you will know what is best for you.

Big HUG coming your way to hopefully cheer you up a bit {{{{{{{{{{HUG}}}}}}}}}}}

I sent you a PM as well.

Take care,

Tim

Pain is inevitable. Suffering is optional

Hi Kat!

You do sound pretty darned frustrated with all these questions so I'm hoping a few opinions might be a little help at least.

In my opinion certainly emotions can play a role in our physical health. I know in the past if I'm upset I tend to (not consciously) tense up my muscles, and when I do this for long enough it can cause my back to go into spasms in the worst way. Relaxed muscles are much happier, whereas tension seems to aggravate inflammation. My guess is your psychiatrist is on the right track. I'm surprised she can't prescribe something that doesn't allow you to continue with tylenol 3's.

I agree it's odd that some hot spots didn't show up on your bone scan, tho since your pain escalation is relatively recent in the overall picture of things, that may have something to do with it? I wouldn't jump into worrying about FM just yet, and wait for the results of the sleep study.

Basically, I'm guessing that up until recently you've enjoyed a rather mild course of disease activity... and now you're experiencing a rude awakening to the real monster that lies within. Huge amounts of pain are (sadly) normal. Yep, even on vioxx, and unfortunately even on 2 nsaids + major pain reliever type meds. And yep, you're right ...it sucks! Hence the depression that often accompanies such chronic conditions like ours.

Honestly I am not trying to scare or depress you further sweetie, but suggest that you give the anti-depressants a try, and make another appt. with your Rheumy to ask him to prescribe some pain relief that will be safe in conjunction. Exploration of a good combo can take some time but you will find a suitable strategy to get this under control! So try not to despair... there are better days ahead!

Big hugs for you Kat!

mig

Hi Kat,

Sorry to hear your going through so many ups and downs (mostly downs) lately. I hope that between all the doctors you've been seeing one of them will come up with a remedy that will help you.

When I was first dxed with AS both my Rheumy and my GP both suggested anti-depressants to help with fatigue and sleep. After trying a few different ones we finally found one I could tollerate (some made me feel confused and dizzy). Wow what a difference it made for me. I've suffered from insomnia for years and years. Now it's rare that I don't get a decent nights sleep. For me a decent night is about six hours. Dealing with never ending pain is much easier when your rested. My attitude about this disease and life in general is much better. All my friends and family have relayed this to me. I know that anti/ds aren't for everyone, but they sure made a difference in my life. When I wake in the AM my blankets are usually still on the bed.

Like you said everyone has their own opinion. This is mine. Which ever way you decide to go I hope you can find some relief.

The best to you and a big hug from me.

Fred

"It's not the size of the dog in the fight....It's the size of the fight in the dog." Mark Twain

Hi Kat,
I'm sorry your going through a bad patch at the moment, we all have good & bad times dealing with AS. It's difficult to get out of the cycle of pain & depression, you will though! Try not to worry! Regarding treatment, follow your instincts, after all you know more about dealing with AS than anyone else. Nothing wrong with a good cry, helps to get your emotions out. Speaking as a fellow sufferer, I battle with depression about 50% of the time, you know! Some good days, followed by bad ones, I'm not taking anything for that at the moment, just seem to get through & having a supportive family helps. I've recently found Kickas & found this as helped me immensely. Don't use up all your spoons!!!

Take care & you'll come through it, you've been an inspiration for us all & made me feel very welcome at Kickas!


Chin up & Kind thoughts & best wishes.

George.








The key to living with AS is acceptance!

Edited by BOROBOY on 11/12/03 03:40 PM (server time).

Kat:
I'm sorry you are in a state of turmoil just now. Obviously, I can't begin to imagine the amount of physical pain you are experiencing. But I can relate to the depression, as I've had several bouts in the last 15 years. At least now I recognize it when it starts to surface - I call it my "scary place" because I think some really bad thoughts when I go there about how much better off I'd be if.............. well, it's a scary place but medications do help!

As for deciding to take drugs for physical pain vs. emotional pain - that's your call and a mighty tough one. Who to listen to? YOURSELF, as you seem to be so in touch with what is going on inside your body. I'm sure you'll figure out what is right for you. And don't feel bad about those tears ~ I've been crying for 3 days now just from watching someone suffer. I can't even fathom how you must feel.

Your posts have helped me immensely in the short time I've been around. Please hang in there and let us know how things are going.

Hi Kat,

I'm sorry that you are having such a hard time. The last thing that you need right now is more pain! It's a tough call! I wish you the best!

Trinka

Edited by Trinka on 11/12/03 09:36 PM (server time).

Hi Kat,

I am sorry to hear of your troubles right now. Sounds to me like the AS is beating you up. A couple of things: I had a bone scan when my pain was at its worst and very little showed up. I thought for sure it would light up like a Christmas tree. So maybe it is not uncommon to not have hot spots, not sure. I also started taking Vioxx as my first NSAID and I was in pain 24/7 until I started prednisone. Vioxx is not neccesarily going to work for you. You might need to try a few different ones until you hit on the one that works. What I was told was to keep trying different NSAIDs and maybe one would be better than the other. I have tried about 8 different ones to date and there isn't one that is better than the other. Also Tylenol 3's do not touch the pain for me, but is the only pain medication I can get from the dr.
I am wondering if it is time for you to start a DMARD? Maybe your disease is progressing and needs to be stopped in its tracks. When I first started my AS journey I thought I would be able to do it with as little drugs as possible. I have now been on sulfasalazine for 9 months and NSD for 7 months and still experience frequent chronic pain. I recently added methotrexate. I am now to the point that I will take anything to control this disease. I do not care anymore about unknown side affects. Just bring on the drugs. Except of course you have to go through the DMARD ladder before they will give you the newer ones.
Don't give up Kat. You are just starting the drug journey and I believe it is a slow road to get to the right one unless you have a dr. who is willing to treat AS aggresively (which I don't).
Would you be willing to try prednisone short term until they find something to control your pain? Can you start a DMARD even if it is sulfsalazine ? I hope you are able to find something soon. Hang in there and keep posting and someone will be able to help.
Take care Kat. Big hugs.

Debbie

There is no drug stronger than a good attitude.

Aloha Kat,

I like the firewoman portrait...

I had a horrid allergic reaction to Vioxx...all the bad stuff; one of the known bad side effects of Vioxx
is BACK PAIN, which occurs in a small percentage of cases...I had just awful muscle/soft tissue
pain in my back that took a month to unravel once I stopped the vioxx.

Several of my friends and my lawyer suggested anti-depressants, which I have successfully resisted so far.
I do take Klonopin at bedtime. It was prescribed by old rheumy as an inoffensive aid for sleep and to combat
muscle spasms and cramps in my legs during the night. Other than the time in which I spent three months
tying out new NSAIDS- which just whipsawed me from bad to badder to useless- I've gotten good sleep AND I
don't wake up all wasted and dumb. Klonopin is an anti-convulsive/anti-spasm med which is a cousin of Xanax,
and regularly used for FM.

when i dumped the Vioxx, I settled on Bextra...not great but inoffensive.

I just love your positive attitude and good karma; wishing you all the best and I do hope
you find a good drug mix...you've avoided meds for a long time; and it's very difficult to find the combination
of things that will work for you...and it's all trial and ERROR. hang in there.
alohaBen

Dear Kat,

So sad to hear about what's happening with you, hope you can go through this bad day and having good days ahead.

Sometimes I feel so bad that I can't offer anything than prayers and hugs.

Take care Kat, you are like sister to me.

Hugs,
Sinta