Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What can I do while waiting for appt?

I'm 39. I was diagnosed early last year but was breastfeeding at the time so my treatment options were limited. My pain is getting progressively worse(I had to use crutches last night, mainly awful pain in one hip.) I called the rheum I saw and they can't see me til 1/18! Right now I use Advil and hot packs, occasionally use Voltaren gel rather than Advil. I exercise daily. What else can I do in the meantime? Is naproxen typically more effective than Advil?

Hi, I'm sorry you are experiencing such pain. We are all different and don't all respond the same way to the same meds. I used Advil until my rheumatologist became alarmed at the amounts I was taking. I didn't get any relief from Naproxen, but some other people do.

Make sure you are at least doing range of motion exercises and light stretching every day to keep yourself mobile and your muscles more relaxed. Start looking at the low starch diet. Some people respond extremely well to that.

Call your rheumy and see if you can be put on a cancellation list, to get a short notice appointment if someone cancels on them.

You'll find your way, but it is often trial and error. I hope you find some relief soon.

Warm hugs,

Massage helps me a lot. We bought a massage table and hubby gives me a quick rub to manually loosen my tight back muscles. Just a little massage regularly goes a long way for me. walking helps too, when my feet aren't flared that is.

I can relate to you as I am holding off on treatment currently to nurse my daughter.

Best of luck!

It took me 12 years (35-->47) to get diagnosed so I had to do a lot of other things to try to deal with the symptoms while I could find a rheumy who would dx and treat me.

I was in physical therapy weekly for the first 5 years; lots of ultrasound and soft tissue work and manual traction. I saw a physiatrist who gave me trigger point injections as needed and a cortisone injection to the SI (that first one lasted a year, til I flared again big time).

I've tried almost all the classes of NSAIDs as they all work a bit differently. Many didn't work for me at all. Ibuprofen worked but severe gastritis with just one pill. Aleve / Naproxen was the best compromise for me, but that too gives me gastritis and edema. I can take one now and then (and still do). When things are bad, I can take one every 12 hours for about 2-3 days before the gastritis and edema become obvious. If I take 1 a day, I can do that for a few more days, but that's about it for me, due to the side effects. The ones that didn't cause me side effects, didn't work. I also went through all the coxII inhibitors; the only one left on the market is celebrex. You could try that; some have good luck with it. It gave me side effects too (brain fog and eventually gastritis).

I have a home ultrasound unit at home that gets used when life gets rough.

I also have used tons of ice and some heat. Ice was always the best thing for my muscle spasms (back), inflammation (neck, SI, wrists, feet, etc), and tendonitis (many places over the years). Contrasting ice and heat works even better, but its a bit of an inconvenience.

Even now, I have to be careful of how and where I sit (mostly due to my neck (bone spurs due to the spondy), how I lay to sleep (initially it was my left side, then my right side, then for years my back, and the last few years I can't lay so I sleep in my recliner....all due to my neck). But when I could lay, a nice firm but soft bed was best...we spent money on a good bed. and walking is always far better than standing. anything stationary for me is a killer.

Exercise but not too much has always been important. Early on, swimming was best for my neck and upper back. But now, its too much stress on my SI. Walking is almost always good unless my feet are flared, so walking but not too much and on a soft surface like the natural ground and not concrete or blacktop are best, and biking was always ok for me because my knees have never been too bad.

For me, staying away from dairy was important (i'm allergic / sensitive to the casein protein and maybe other proteins in cow's milk, maybe goat and sheep milk are ok for me). I also more recently discovered through blood work that i'm also allergic / sensitive to yeast (found in beer and bread products) and egg protein, so now i stay away from those things. Some? Many? have different food sensitivities (like celiac but to other proteins besides gluten), so keeping a food symptom diary (especially if you have GI symptoms) can help figure it out; that's what told me dairy was off the table. Then IgG/IgA food allergy testing was the other thing that told me what to avoid. Definitely helps my GI symptoms (gastritis and diarrhea/constipation), maybe my joints too? and other symptoms?

Before humira, I was constantly in need of being put back together again after each bad flare, and constant maintenance due to the neck bone spurs pressing on the nerves causing muscle spasms. I still need to work at it, but just not so hard.

I started on a supplement journey before I could find a rheumy that would treat me and some of them are worth exploring: probiotics (for the GI), vitamin C (to support the immune system), vitamin D, magnesium (for the GI and muscle spasms).

I also went on low dose naltrexone before I could get Humira. It helped my enthesitis a lot, but didn't help the flaring or the neck or SI inflammation enough. But I'm still on it to boost my immune system.

Thanks for all the helpful info. Unfortunately I can't try any prescription meds until I am seen again. I did buy a really basic TENS unit yesterday. Has anyone tried that and found it helpful? I also got some capsaicin cream as I've never tried that. I know I have erosion in the hip joints so I don't know how useful topical a will be but, I've got to try something.

I'm receiving allergy shots as I tested allergic to all 24 things they tested me for! None of that was food allergy testing. I do hope to do that at some point. I have constipation type IBS. Never thought it might be related.

Also, has anyone tried acupuncture? I used it for fertility purposes when I was having recurrent miscarriages. Massage is a great idea.

I tried acupuncture. Tried it with 3 different people, tried it for 3 months with the final person. It really did nothing for me, but I gave it a good try. Its another pretty noninvasive thing and so worth trying; nothing really to lose by trying it.

I tried TENS. I have one at home but i never use it because it did nothing for my pain. but others on here have reported good results with it so try it, nothing to lose.

I am very sensitive to capsaicin. I tried it on my hands for my tendonitis, but didn't do a spot test first and my hands got burned, turned bright red and burned terribly. The pharmacist gave me a hydrocortisone cream? or steroid cream? to combat it and told me to use ice water to bring the burning down. But most people don't react that strongly to it. Still, do a spot test first to make sure you don't react to it like that. If you don't react to it like I did, its worth a try.

With that said, I love my blue icy gel. I use the no name CVS brand as its cheaper. Its the menthol that is the active ingredient. It does seem to help my neck when its driving me crazy. and it seems to help my tendinitises when they flare up. Its pretty harmless stuff and so worth a try.

Hello, Sistrmoon:

Regret most rheumatology appointments are very disappointing and certainly not usually worth the wait; too many of us get our hopes up, and it is so easy to hope for a biologic that will work.

So, meantime please try eliminating dietary starches. Many of us have benefited considerably from this one lifestyle change, and I took it to extremes in challenging the germ hypothesis, so coupled this diet with antibiotics.

I have been in total remission for over 15 years, thanks to the information we offer on this site--Professor Ebringer's technical papers, and the good guidelines in Carol Sinclair's "The IBS Low Starch Diet."

And I did have hip bursitis so bad that I was unable to walk and I then made the terrible mistake of taking NSAIDs: It was long before I learned of the diet and the inextricable basic alimentary tract connection with AS. Although I have permanent skeletal damage from many years of improperly treated AS, I have had no active symptoms at all, as mentioned before.

HEALTH,
John

I'd love to know how to do a no starch diet as a vegetarian. Seems like it would be restrictive to a difficult extent.

Sue, I wish I'd read this yesterday! I had a swath of bright red excruciating burns on my sacrum. Oh that was awful. I used a burn cream and some Noxema and its better today. Guess I won't be using that again.