The last few weeks have been very challenging and very sobering for me. And caused me to seek out some help and start digging for even more information than ever before on the subject of healing through food.
What happened is right about the time I completed my post on being 60 days compliant, my body went into a downward spiral of flaring. Horrible, painful flaring. Everyday seemed to get worse. It was like an all out war on my joints. My husband and I were at a complete loss as to why this was happening.
Nothing had changed in my diet. I had actually become stricter with what I was eating. For example, rice is non-AIP compliant, but some folks can eventually eat it with no problem. I had re-introduced rice in February, with no apparent side effects. But since I was still have a few flares, I decided to take it back out. The same with eggs (even organic hormone free). I decided to wait until I was "flare free" to reintroduce anymore of the "gray area" foods.
So we could not connect this change to anything I was eating. My stress level had not changed, I had been sleeping fine (two things that by themselves can cause flares). But I was suddenly in more pain than I have ever been. And there was no relief.
At this point, I was taking more than the recommended dose of Ibuprofen every day, which is not AIP compliant (it's very damaging to your gut). But if I was to function at all in life, I had no choice. I've always been annoyed by some of those commercials that show people taking one Ibuprofen for their "arthritis" and then go off to play tennis or go bike riding. I had to take three times the dosage just to get the edge off so I could get in and out of a chair. Tennis was definitely out of the question.
I had a regular appointment scheduled with my rheumatologist on March 10th and I was so looking forward to going in and bragging to her about how good I felt without meds, etc. I was even hoping that a follow up appointment would not be necessary. But, instead, I walked in there with stiff swollen joints and moving like I was 100 years old. She suggested, if I didn't want to go back on the biologic drugs (remember that I have tried Humira, Enbrel and Orencia so far with their lovely side effects) then she could prescribe a low dose of Sulfasalazine (an antibiotic drug used on RA patients with the theory that it can be caused by an underlying infection as well as leaky gut) or Hydroxychloroquine (a drug used for malaria patients but also used for RA or Lupus). The rheumatologist said it was my choice, but that she thought it was a good idea to take something until the flares were under control. She also reminded me that long term flaring can eventually cause damage to the joints, something I have been able to avoid so far.
Even with the pain I was having, I told her I would rather still try to get through this naturally. She was supportive and just told me to call or email her if I changed my mind.
That night was the worst flare I'd ever had. Every one of my fingers felt like I had jammed them, my wrists were swollen and painful and I could barely move my shoulders. My knees, hips and elbows were tender to the touch and the tops of my feet (I didn't even know joints were there) hurt like crazy. Taking a shower was almost comical, trying to figure out how to wash my hair when I could not lift my arms (because of the shoulder flares) or move my fingers. Getting in and out of bed was also interesting. You don't realize how you depend on your joints or take them for granted until it's painful to move them.
When I got up the next morning (after not sleeping well at all from the pain) I told Tony I could not go on like this. I couldn't figure out what was going on with my body, but I needed some relief. I believed I was on the right track with food, but I needed to be able to function, too. I emailed my rheumatologist and asked her for a prescription for the low dose of Sulfasalazine. Of the two she suggested, this one had the fewer side effects.
And then I cried because this was just not what I wanted, to be back on meds. Any meds. And then I got on Facebook to one of my closed groups of a community of others trying to heal with nutrition alone and asked if anyone else was having the same problem. Off of meds, feeling pretty good and then about a million steps backwards.
This is what I found out. Going off meds prior to healing was never a good idea. It takes several months for this nutritional protocol to reset your biology and begin the rebuilding process (molecule by molecule). And then your body must begin healing the damage that has already been done.
Here is what Eileen Laird (someone who has her RA under control through food) responded to me and to others who responded to my post:
"Hi everyone. I'm Phoenix Helix, the autoimmune blogger with RA and an intimate knowledge of pain. Please don't go off your pain medication without your doctor's advice. You're mistaken on Sarah's position on NSAIDs and the AIP
(note from Helen: this is in response to someone stating that The Paleo Mom forbids NSAIDS or Ibuprofen on the AIP protocol). I understand why you are because it's on her blog list as being forbidden, but that's for people who use it intermittently for mildly annoying pain, not people who are prescribed NSAIDs by their doctor to treat the severe pain of RA and other inflammatory AI diseases. Every medication for autoimmune disease, including immunosupressants, NSAIDs, steroids, digestive discomfort meds, etc., contribute to leaky gut, and Sarah details this in her book. That's why we all want to go off them, but as Helen experienced, it's a mistake to go off medication cold-turkey before healing has had a chance to take place. Terry Wahls, Paul Jaminet and Sarah Ballantyne all warn against this. Here's a quote from the Paleo Approach book: “Changing, tapering, or discontinuing your medication – especially if you are taking prescription drugs, but also any daily over-the-counter medication that your doctor may have recommended – should, without exception, be done under the supervision of a health care professional. I must also emphasize that changing your medication is not, in most cases, something to tackle when you initially adopt the Paleo Approach. By improving your diet and addressing lifestyle factors first, you will be able to heal your body as much as you can while you are still taking these drugs, which will significantly help you adjust to discontinuing them.
Helen Gonzales, what I think has happened is that your body is rebounding after having been on immunosuppressant medication. The AIP can take many months to achieve healing, and by removing your meds and supplements, you unintentionally set off an inflammatory cascade in your body. The pain flares have your stress hormones off the chart, and they cause leaky gut and exacerbate AI symptoms. Basically your pain is causing your more pain. Try not to be too disappointed that you need meds - it's not forever. You just need to give yourself time to heal, and it can be discouraging when you hear the overnight success stories and you're not one of them. But most people heal slowly over years, not over a couple of weeks. Needless to say, the advice I gave to XXXX in my first paragraph also applies to you. Don't stop relieving your pain. I firmly believe that excruciating pain is a far bigger roadblock to healing than the meds that relieve it. When the pain goes down, that's when it's time to start tapering your dose, not ahead of time. A good role is Terry Wahls, who continued taking her immunosuppressant medication for 6 months of seeing improvements before she started tapering her dose. As for her pain medication, she reduced it as her pain reduced, but still takes a small dose to manage the minor pain that remains. This is the woman who got out of a wheelchair! Taking the medication her body needed didn't interfere with that process. Wait until you no longer need them before attempting to go off your meds again, and next time, taper your dose. Cold turkey is never a good idea. "
Eileen's post made me feel so much better. I felt like less of a failure and instead got some fresh hope. I also downloaded Dr. Terry Wahls book on my Kindle. Dr. Wahls was in a very advanced stage of Multiple Sclerosis and turned to nutrition for healing. She went from being in a wheelchair to now being in remission. In her book "The Wahls Protocol" (which is very similar to AIP) she emphasizes many times to remain on your medications until you are seeing signs of complete healing and then try to wean off of them gradually. She even said "if you stop your treatment now, you could very likely have another relapse or worsen before you get better" discouraging you to go any further because you will think it's not working.
Since the meds I was taking were not being effective anyway, I just chose to stop them when I started AIP. I thought I knew best with my whole "Look at me, I'm med free!" boasting. Now I can see that the smart thing to do would have been to switch meds (to something that WAS working) until I could give my body time to heal.
So I started on the Sulfasalazine oral antibiotic drug last week. I also ordered a good multi-vitamin online (organic and additive free) and started taking them, too. My flares have already calmed down some. The drugs are supposed to take 6-12 weeks to have any effect, so I don't think it's from them, unless my body responds more quickly. Maybe the vitamins are helping or maybe God is just giving me a break for a time. I was even able to go for a walk today, although at a fairly slow pace. It's going to be awhile to get back to the point of doing 30 minute workouts on the elliptical a few days a week as I was doing last year. But I know I will get there again and hopefully even more.
This experience was very humbling for me. And a new awareness of how severe and devastating this disease is and not to be taken lightly. And I feel sad thinking that my dad and my brother were in this much pain for such a long time. I believe pain gives us a whole different perspective on life. And it can make us very bitter, or cause us to rise above it. I hope that I can choose to rise above it until it, hopefully, is gone for good.
I still believe that a nutritionally dense diet is a key to healing our bodies. And I'm confident I will eventually be able to taper off of these drugs. But, I won't let my pride keep me from seeking help anymore when it's needed.
Moving forward once again. Off to make a healthy juice from carrots, celery, ginger and an apple. :)
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