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Shanno
Regular Member


Date Joined Aug 2009
Total Posts : 64
   Posted 8/6/2009 6:52 PM (GMT -7)   
Need a vent, really

I'm 27 and have had AS for 14 years. pain pain pain for most of that time, though nothing compared to the pain of sacroillitis. Im a shell of my former self. I was diagnosed mid 2008 with sacroillitis. in early 2009 I had a CT Guided cortisone in both SIJ's, which was one of the most painful things I have ever experienced. instead of getting better after 3 days, the pain got worse. I couldn't get out of bed. I begged my rheumy for painkillers but he was pretty much unresponsive and evasive. I'm pretty sure now he thought i was just trying to get high or something (!) I had a week to wait before getting into my doctor who is a great guy. I ended up going into hospital and explained the situation to them - they gave me a script for Endone which helped dull the pain a bit, but not much.

When i got to see my doc I was an absolute wreck. I hadn't slept in about 6 days and I went to pieces on him. Looking back it was a VERY traumatic time for me. he put me on MScontin, endone & valium, quite a mix I know but nowadays it is the only way I can be at least comfortable. Valium helps control the muscles - they seem to spasm in an effort to protect the joints and as time goes on, I find that this happens more often. People tell me if I'm cold to get a jumper on - I am trembling from all of the contracting muscles in my body trying to protect the SIJ's and the bottom half of my spine, all of which are fusing.

when I saw my rheumy after all this happened, the look on his face said it all and realised how much I went through - I am now booked into a pain clinic next month. I really need to get a lid on this because sometimes it seems it is eating me alive - I am finding it harder and harder to concentrate at work and I also feel I am becoming a burden on the people close to me. One of the things I am trying to find out is how long the fusing process is going to take?

This disease really SUCKs

beezkneez
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/8/2009 1:55 AM (GMT -7)   
Hey Shanno! Sending cyber hug ...

I feel your pain, I have the Royal Pain in the Butt too. smilewinkgrin I don't have AS - well, no fusion anyway - just persistent SIJ inflammation for 18 months plus a brief bout of iritis. I seem to have low-ish level pain all the time (much more at night) with a few really bad days every couple of weeks, with nerve pain down one leg. I don't really know why, I'm always trying to figure out what brings the extreme pain on.

Tried the cortisone injection a few months ago and found it alarmingly painful but only for a few seconds. Lots of muscle spasms too, but it didn't last. I seem to have gotten a bit more mobility since then, though it didn't really reduce pain.

I've found Naproxen (NSAID) good to reduce the pain - by maybe half. Also tried Mobic but it didn't do very much and gave me bad heartburn. My rheumy prescribed methotrexate, added to sulfasalazine. I was kind of hesitant to start methotrexate, but so far haven't really had any side effects.

I'm a big fan of physiotherapy, I feel much less bound up after a session. Took a while to find a physio I really liked, it was worth the effort of shopping around. Also being in or walking in a warm swimming pool. Even if it's too painful to exercise much, it's really soothing, calms me down anyway.

Are you going to be prescribed a TNF blocker drug? I've heard they're a miracle for some people.

Shanno
Regular Member


Date Joined Aug 2009
Total Posts : 64
   Posted 8/9/2009 3:13 PM (GMT -7)   
Hey mate, thanks for the reply!

I did do Naproxyn in the past and have been thinking about asking the doc about trying it again. I have been on TNF blockers for a few years, done Remicade, Enbrel and when I got probs with the SIJ's they switched me to Humira. the blockers work great for shutting of the AS pain in my spine, but nothing at all for the SIJ's OR the fusion pain. Physio is quite good but only lasts max for a day or so. I was on methotrexate for a while in the past, though it made me very, very sick. Even so, I asked the rheumy last week about maybe trying it again to see if it would help, and he told me that is more for peripheral type arthritis e.g. hands feet.

I do have some good days, though less often as I would like. the spasms are terrible, if I don't load up on painkillers, my whole body tenses up and I tremble like mad until they kick in...at one point I didn't realise how tensed I was (over 3 days) until I got more painkillers. as soon as they worked, my whole body relaxed and I fell asleep almost instantly as I was so exhausted from the spasms. I have never felt such a pleasent feeling of relief as i felt when my body relaxed. I didn't even realise how bad it was!

The pain you are having in your SIJ's - have they scanned them? are they going to fuse on you?

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 8/9/2009 5:07 PM (GMT -7)   
Hi Shanno, I don't have sacro but I just wanted to send you a big but gentle cyber hug. Your back sounds horrendous. I have good pain days and bad ones (though not as bad as you) and just try to really enjoy it when I'm having a good one. It sounds as if you don't get much of a break apart from a med induced one!!! Best wishes to you anyway, golitho

Shanno
Regular Member


Date Joined Aug 2009
Total Posts : 64
   Posted 8/9/2009 5:21 PM (GMT -7)   
Thanks mate

I was having a rather bad day on Friday (as my post suggests) today seems to be much better (without meds either!) so I am taking the most of it while I can! I haven't had a mostly pain free day in quite a while (plus I am seeing my GP for more meds today, that tends to put me at ease as well). You really learn the true meaning of agony with this disease; I have nothing but the utmost respect for people that suffer with these levels of pain and are still able to function, goto work etc - I take less time off than a lot of people at my work who take three days when they sprain their ankles and what not. people just dont understand pain.

I am booked into the pain clinic 4 days before my wedding. I told my Fiance that at this point, i was looking more forward to the pain clinic, she just laughed and said she was too! I cant wait for both really

Thanks for all your kind thoughts

beezkneez
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/10/2009 3:01 AM (GMT -7)   
Oh geez, Shanno, you're really going through the mill. My daily struggle with SIJs is very little, really, I'm functioning pretty well - this week anyway.

Frustrating when you've been through lots of medications and you can't get relief, hey? I know the methotrexate is unlikely to do much for me, but I'm happy to try anything at this point. I'm nowhere near qualifying for the biologic drugs (no fusion on xrays etc) so there's not too many options for me. That's interesting to hear the blockers didn't help much for your sij pain. That actually makes me feel kinda glad I don't have to go there yet.

You're right a lot of people don't understand pain. Only now do I notice people who limp, who walk slowly, who don't swivel their necks, who sigh when they sit down, old people with walking sticks ... all seem to be suffering in silence. Thank god for venting on the internet! You've probably already found the KickAS forum - I recommend it to any other AS sufferers out there.

Shanno
Regular Member


Date Joined Aug 2009
Total Posts : 64
   Posted 8/10/2009 3:24 PM (GMT -7)   
Yes, I've posted a few times on that site, If I couldn't really have a good vent in a forum with other sufferers who understand it really does help out alot. Fiances and family members nod and say they understand, but you really cant portray to them unless you can click your fingers and let them experience what you do for a day or two. sometime I wish I could do that! Ive also heard that many people experience fusion with little or no pain, and sometimes don't even realise they have fused! I'm quite amazed by that, some days i feel like i am being ripped n half, thats the hardest kind of pain to deal with - a lot of the other 'flavours' i deal with quite well, but not the ripping...what I'm really trying to find out is how long the fusion process takes, i just cant get an answer out of anyone, doctors, specialists etc. The day it finishes though is going to be like christmas morning!

This week is turning out to be quite ok (so far) no fusing pain, though a fair bit of pain in my hip joint....mentally though i am in a much better place than last week. Thanks all for your kind words of support
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