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Re: Pain Management
Eilatan #266596 05/21/14 07:35 AM
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Thanks Fitz and Jen for those personal accounts. I'm sorry for all you've been through, but Fitz, that's cool about your golf game! LOL

I did hear from my rheum today. Oh! Y'all want a LOL? I sent 2 emails to the doctor but didn't hear back, so I called his office Tuesday morning to leave a message asking if he could reply to my questions in my emails as soon as he could get to it, I would really appreciate it. I tried to say it as respectfully as I could. So the office assistant got all defensive, as if it was a personal attack on HER. She starts telling me how he gets to emails when he can and he's very busy. I said, OK, that's all right. It's not a criticism. I would just like it if he could give me an answer as soon as he possibly can. So she says (not kidding), well you know, he's very busy. He doesn't just sit at the computer all day answering emails. He sees patients and...you know, he sees a lot of patients. I mean, well, he sees patients all day. I thought, he does? A doctor that sees patients? Wow! That's truly incredible! I thought he just answered emails! LOL

Anyway, I did get a reply from him later in the day. He said he's glad I'm getting relief and feeling improved. From my x-rays, he says, the arthritis I have looks like the inflammatory type (is there any other kind? I thought any arthritis causes inflammation...oh well). He goes on to say that inflammatory arthritis is the kind that tends to recur once medication is stopped, so it's probable I will have a recurrence once I finish the course of prednisone. If that happens before our next appt (2 weeks), I should call and he can either try me on a non-steroid inflammatory (I'm already taking Diclofenac) or another longer-term, low-dose steroid, or a combination. He said he normally doesn't encourage use of pain medication that isn't an anti-inflammatory, but if I found it helped me some recently, he's willing to write a script for a small ration of a narcotic called norco. I've never heard of that, but it might be fine. Both things were a great comfort to me, even though I'm not keen on going back on steroids for a longer period, even at a low dose. I wrote back that I really appreciate that and a small script for something with a little codeine was all I wanted, and I'd be grateful. It's a comfort to know I have them on hand if the pain gets intense again, but I know that's not a long-term solution. I guess I'll have to take it a day at a time.

I felt so much better today, and it was so nice out, I decided I would seize the day and take care of something I had to go out for while the going was good. I'm not taking it for granted I'll feel good tomorrow just because I feel good today. So I went out, I was driving a couple of hours, and I had some activity. I even had to get on my knees for a minute and it struck that less than 48 hours ago, I didn't know if I'd ever be able to kneel for anything. When I returned home about 8pm, I was a little tired but felt OK otherwise. I decided to have a bath tonight with salts because I can sit down and get up normally now. I think I saw something on the board somewhere about salt water baths being good for AS. I love baths and it felt luxurious to be in one again. The salts made the water lusciously silky too. As I was soaking in tub, again I was struck by what a miracle it is that I can sit down in a tub like this when I was barely able to sit on, or get up from anything Sunday night, and I was thinking I wouldn't be able to shower. The bath felt terrific and I was able to get up from the tub without pain (and I have a deep tub). I really did feel refreshed and relaxed after. I sure hope it won't be my last!

Re: Pain Management
Eilatan #266606 05/21/14 05:52 PM
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Glad you're feeling better! Not being able to do normal everyday things such as sitting or driving out somewhere for a while sure teaches you to seize the moment when you do have a better day, doesn't it? Hopefully the good days will continue for you.

Re: Pain Management
Eilatan #266608 05/21/14 06:43 PM
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Thanks, Lizzie! That's very nice of you. I must say, the people here are very compassionate. It's nice to see. My rheum sent in a script to the pharmacy I use for medication. I ought to be able to pick it up some time today. I'll feel better just knowing it's there if I get really bad pain again.

I think it IS important to know how to make good use of one's time, and seize an opportunity when it presents itself. "I'll do it tomorrow" is the curse of the chronic procrastinator--of which I am one--and too often we find tomorrow doesn't present the opportunity to get done what could've been done in the day before. In the spirit of this recognition, I'm telling myself I really ought to mop the kitchen floor, which needs it. There's a strong pull on my motivation scale to lie back on the living room sofa, on all the cushions in a pillow, close to the open window that's open while a lively breeze filters through it, along with all the calming sounds of spring...mostly lots of birds singing. Much more appealing than mopping a floor.

The most pressing concern now, though, is a wedding I'm attending Saturday evening. I'm not exactly excited about it or looking forward to it. I do have to be there though, so I want to enjoy it as much as I can. I have a lot to do between now and then, so I need to push myself into action

Re: Pain Management
Eilatan #266617 05/21/14 09:47 PM
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I believe everyone needs to find what works best for them without judging one another. I take pain meds daily to be able to function, as well as Humira, mtx and recently Soma for sleep. Sleep deprivation is a terrible thing and if taking a pill allows me to sleep for 4 or 5 hours then so be it.


S. Elizabeth

Dx AS in 04' HLA-B27 positive, Chronic Uveitis, Raynauds.
Humira wkly, Mtx inject wkly, Soma, Hydrocodone. Tried Remicade, allergic reactions so back to Humira

























Humira wkly, MX wkly, Folic Acid, Navanac daily, Vicoprophen PRN, Flexeril, recently failed Remicade, back on Humira wkly.
Re: Pain Management
smittygirl50 #266620 05/22/14 12:50 AM
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I completely agree with you, Sue. When it comes to things like personal health matters and living with chronic pain, I would never feel in a position to dictate to someone else what to do. These are extremely serious, personal issues and people must decide for themselves what's best for them. No one else can feel my pain, and I can't feel yours. I have experienced firsthand what the pain of AS can be, and I can see easily how a person might do all sorts of things--conventional or unconventional--to cope. I am grateful a script for a low-dose narcotic is waiting for me at the pharmacy. I'll pick it up in a little while. I hope I won't need it--at least while I'm taking the steroids. If I do relapse, though, after the medicine is finished, definitely I may need it.

Re: Pain Management
Eilatan #266625 05/22/14 11:27 AM
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On the AVN topic, I don't know what, if anything, was done to address the prescribing physician, but I'm sending this thread to his mother, who is my good friend. She will appreciate the comments on the topic. She can then share with her son when he's recovered more, since his surgery was very recent. He has a great deal of anger about it, feeling so compromised at such a young age. Many here can relate to that emotion. Jeff, TNT, Jen...your opinions on this are all very helpful and may be useful as this young man begins to deal with the aftermath.


Barbara - 51 year old female, married, one adult child (28 yr old)
HLA B27+, symptoms since late 20's, explosion of symptoms age 38, dx age 49 (2012) undifferentiated, now changed to PsA (axial & peripheral with mild psoriasis)
Started MTX October 2012, started Enbrel April 2013, switched to Simponi August 2013. Switched to Humira 2014.
Surgical spinal cord decompression/discectomy/fusion C4 to C7 (ACDF)- Aug 2011.
Re: Pain Management
Eilatan #266700 05/25/14 08:30 AM
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I was able to attend my niece's wedding Saturday night thanks to the low-dose steroids I've taken, which ended Sat. morning. I'm so grateful I was able to go to the wedding and be comfortable. I even danced. Not just a little either! I had a few slow dances with my husband, and even some rock n' roll dances when the band went uptempo after dinner. It was great! I had no pain and it was a long evening. I'm so lucky the steroids were so effective.

The scary part now is I finished the course and now I'll have to see whether the pain remains abated...or if it will return. And if I do relapse, what will I do then?

For now, however, I made it through the wedding and I even managed to enjoy myself some. ;-)

Re: Pain Management
Eilatan #266701 05/25/14 02:14 PM
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I'm really glad you were able to enjoy the weekend. Don't think beyond it. The good days are awesome.

Last edited by Fitzroy; 05/25/14 02:24 PM.
Re: Pain Management
Eilatan #266725 05/26/14 10:21 PM
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My son asked me the other day what I thought heaven was like, without even a second's thought I said a place without pain. I've been fighting with this disease for my entire adult life. Since my dx I have avoided opiates, as I remember Dr's who were all to happy to whip out their Rx pad and describe them without trying to find answers. (full disclosure I have never done steroid treatments for my AS) I have been able to function using a combination of Celebrex twice daily and my evening cocktail of Celebrex, Tramadol, and Flexoril. Not one single day is without pain, ever. This is a fact I have come to respect. This year bone formation began on my cervical spine putting creating a whole new world of pain, massive cluster migraines from pressure on the nerves. All attempts to fix it failed miserably, mainly only by causing more. After discussions with my pain management Dr. and rhuemy I know that the big league drugs are in my future, but I would like to hold off as long as possible. I do not like the world seen through "the fog" of opiates (this is a personal opinion). Both Dr's have warned me that increased pain levels over extended periods of time can actually exacerbate inflammation, so I may not be doing myself any favors in putting it off. If your pain levels are that bad in the evenings, (I don't have a medical degree, nor am I a research expert like some here smile ) But jeez, if that's what it takes in the evenings why suffer?


The mighty oak was once a little nut that stood it's ground

I'm a 34 year old happily married mother of two crazy boys. I have AS. I take HRT's daily,Celebrex 2x's daily, tramadol every 6 hours, flexoril at night, failed Enbrel, currently on Methotrexate and Remicade infusions.
Re: Pain Management
Eilatan #266729 05/26/14 11:37 PM
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I do not see the world threw "the fog" of opiates.
I am on high doses of opiates, they are the only thing that makes me functional. That just me, but I know if I don't take them, I would be a miserable mess.
This is my choice to take them.
Tramadol, was like taking a candy, for all the good it did.
But if you are suffering needlessly, you might want to think about taking them. If you don't want to take the pills, then try the patch.
The boys, might see a whole new person, if you tried them?

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