Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group another new comer

Hi everyone. My husband found your site a month ago. We've been reading your posts and have learned we are not alone. My husband as had AS since he was 18. He was finally diagnosed two years ago at 48 yrs old. His doctor said AS was rare and gave us very little hope, we're looking for a new one. My husband's pain started in his hips and lower back. He went into remission during the 1990's. But the pain has come back worse than ever. His spine is fused from his hips to his chest. His neck hurts all the time. His left knee swells up and is another source of constant pain. He is unable to completely straighten out his knee now. He can't take NSAIDs. They mess up his stomach. He was on Humira. It made him feel like he had the flu without any decrease in his pain. He is currently taking 150mcg of fentanyl patch every two days and 150 vicodin each month for break through pain, and still he is in constant pain. Is anyone else in this much pain? What can we do to lessen his pain. We have just about given up on the medical world for help or answers. Thanks.

Hi Jeanne,
Welcome to Kickas.org. I'm sure you and your husband will like it here. I'm afraid the fentanyl patches and vicodin aren't going to do much for the inflammation, and that is probably why he is feeling so much pain on a constant basis. He will need something to keep that inflammation down. Narcotics are great for what they do, but I don't think they were created for fighting inflammation any. I see NSAIDs are out so I am hoping one of the other biologics might help. If you look around a bit, you will noticed people talking about NSD, which is a diet that alot of people here follow to relieve their pain and other symptoms. Maybe he would be interested in that?

In the past I had to struggle with constant pain, but now I'm fused up so the pain isn't as harsh in these stuck joints, plus I am using some alternatives, watching what I eat, vicodin etc. I'm just trying to get by on what I can because I can't have many meds either.

Your probably not aware of it, but the forum category we are talking in is a brand new category for people with RA. I'll go attract some attention to get people to notice your post.

Take care,
James

Hi James, It's nice to meet you. I realized I was in the wrong section after I submitted my post. I guess it shows that my strong suit is not woth computers. Thanks so much for your help. I'll have my husband read your comments. Jeanne

I can certainly relate to the pain, it's something I've been struggling with since I got sick about four years ago now. For me, there aren't any flares, it's just always on and I found myself praying for death eventually. Pain like that will drive anyone nuts in time.

My top priority was to find a way to stop the pain, even if it was only for a few minutes now and then...just to stay sane(ish). It sounds like your husband is being dosed like a horse, hopefully the meds offer him some relief.

I recently re-discovered smoking pot and I cannot say enough about how absolutely magnificent it is. Eating the cookies I get from a local Compassion Club is actually the best way and the effects last all day long...sure I'm a bit stoned and my posts are goofier but I really don't know how much longer I would've been able to hold on.

Obviously, this isn't a very good option for everyone for various reasons but if you can manage it, I would highly recommend it for anyone.

The whole doctor thing is so touchy, it's really important to get one you like because we see the rheumy quite a bit. All of my doctors tell me the same thing...basically, "it sucks to be you". I like them though, I would rather get the straight goods.

It is an incurable, degenerative disease after all.

On the upside, there are plenty of people here who advocate the No Starch Diet - if you don't know all about it, you soon will.

Also, I have heard that once things fuse up, the pain can become more manageable.

We're all really glad you found your way here and wish there was no reason for a site like this to exist. But since we're all here now, we might as well get to know each other.

Take care,

Chris

Welcome Jeanne - glad you found the KA family. All here to help and support you.

Can relate to blown up knee. Have had that a couple of times. A wee surgery helped matters first time round. Arthroscopy, lavage and debridement. Worked a treat. Lasted me several years. Knee blew up again about 4 yrs ago. Could not straighten it again - needed another arthroscopy and lavage etc. But, had no top-up insurance and NHS wait was, like forever. So didn't have it done. Eventually settled down. Phew! But I sure could have done with that surgery!

As for the back. Mine jips, but nowt like to what your husband's sounds to be doing to him. Fused hips to chest... Strewth. Well, fused 'usually' means that the pain lessens? Needs an antiinflammatory to deal with this'un. Celebrex worked well for me until it exacerbated my LPRG/GERD. Now take Nexen - which I don't believe is available in the USA. Like your husband, unable to take the NSAIDs - takae my stomach out. They've done a real number on me in the past.

To help with spinal probs I basically take LDN - low dose Naltrexone. Helps control spinal inflammation. again, can search the boards here for info: lots of info here. Can also Google it up on the .org websites.

Neck probs. That is a horror to deal with. Heated neck wraps, ice? Wearing the occasional support collar when *really bad? These might help.

Hope that you can get to a rheumatologist and get onto some serious drugs. Meantime, check out the Alternatives Forum group. Read up about the NSD (no starch diet) and LSD (low starch diet). This might be a way forward. IF the diet works, then will not need the biggie drugs. 'Smile'.

Meantime, seriusly suggest that you get an appt to see an orthopaedic surgeon. Get that knee looked at. Sounds like osteophytes - and could well have a nice wee chunk of bone loose and getting into the articulation of the joint! Nasty. But easily dealt with. The surgery is terrific. Take care -

Molly C (France)
Keeping on Keeping on

Dear Chris,
My husband and I read your post. He smiled and said, "That's me." Looks like we have a lot of research to do, both with the new diet and with alternatives. Finding a new doctor will be tricky. We have been asking around for referrals. None so far.

Thanks to everyone. We finally have some direction.

God's peace to all ,

Jeanne

Welcome

47 here with AS raging since teens. I always figured the key to battling was discerning the pains cuased by inflammation from the pains cuased by muscle spasm or physical alterations due to fusion.

Massage has been enormously helpful for my neck and shoulders and ehadaches since most of those pains which were the sharpest were from muscles and soft tissue issues that were ancillary to my fusion.

My knees hurt like heck for a long time because my hips had fused so young, hip replacements helped the knees and luckily the knees didn't get worse.

I gave up on NSAID's more than a decade ago except the rare OTC ALeve. Actaully found a rare use of low dose of them does more good than when I was on a steady of diet of them and does not hurt my very damaged gastro system.

I don't know form your post how active or inactive your husband is because of his condition but I try like heck no matter how bad I feel to get some exercise or stretch every day.

SOme have done wonderfully on DMARD's or things such as Sulfasalazine. My mother also with AS swears by it and is way better off than me.

Folks here will tell you about benefits of diet. WOrth a shot.
There's always something that breaks through a bit. Welcome and keep trying.

just wanted to say welcome and as steve suggested, deciphering the cause of the pain can help a lot. i can't take NSAIDS (wish i could cause they work great for the inflammation for me, but nasty for my stomach) so i use ice for my inflammation. would use something more powerful if only i could get a DX and thus treatment. did get the doctor to agree to low dose naltrexone (LDN), using his argument of his not wanting to put me on a "dangerous" med without knowing what i had, convincing him of the safety of LDN according to the literature; does seem to help, but not enough, need something more. the other "pain" i get is as steve suggested, the muscle spasms, for that my zanaflex and ice or heat help a lot. and important for me to take a walk or some such exercise nearly every day.

PS and ultrasound as needed, that helps my tendons and muscles a lot, have a home unit now, best $ i've spent in a long while.

I can relate to the swollen knee, its terrible. I too have prayed for death, this is one freaking painful disease.

Glad you found us. Wishing you good luck and peace.

Steve - you are always so [*bleep*] positive and encouraging - it's hard to believe what you've actually been through.

That's meant as a compliment.