Terry Wahls Protocol

Hello @steve9900, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for starting this discussion. I am a fan of Dr. Terry Wahls. Reading her story of treating her symptoms of Multiple Sclerosis and going from a wheel chair to riding her bike daily was inspiring and gave me some hope when I really needed it. I never got to the strictest version of her diet but did follow the beginners version and that helped me change my lifestyle and I learned to eat healthier. I followed it closely for a couple of months after being diagnosed with small fiber peripheral neuropathy and while it didn't help with the numbness I have, it did improve my overall health. I think it's a win-win for you to give it a try.

For those not familiar with Dr. Terry Wahls, here are a few links to learn more about her and the Wahls Protocol.
-- About Dr. Terry Wahls: https://terrywahls.com/about/about-terry-wahls/
-- Dr. Terry Wahls Diet for autoimmune disorders: https://www.wellandgood.com/wahls-diet-recipes/
-- Wahls Protocol Complete Food List (PDF): https://elmmedicine.ca/wp-content/uploads/2019/07/Wahls-Protocol-Complete-Food-List.pdf

My PMR has been in remission since 2018 and I do give some credit to the eating habits and nutrition that I picked up after reading her book The Wahls Protocol. I'm surprised that you are able to avoid taking prednisone to help with the PMR pain. When my PMR was active both times, it was really debilitating and not taking a pain medication wasn't an option for me. Do you mind sharing any coping mechanisms you use for the pain associated with your PMR? Were you diagnosed by a rheumatologist?

At first, in January, a doctor diagnosed it fairly quickly in my first meeting with him. I spent the next few months seeking a second opinion with somebody I liked, but by then I had diagnosed it as PMR through heavy research. There was really a process of elimination because I had no other symptoms that matched any other disease and I looked at hundreds. I think what confused me from realizing it was PMR was because of my extremely low c r p values. Then I found someone who said that 10% of PMR patients have normal.crp values. My pain had started a couple months before I saw the first doctor and I had an early onset of carpal tunnel syndrome, which I later found out happens frequently in early onset of PMR. I got a cortisone shot in my hand which solved that problem and hasn't yet gone back to that credible pain I had in that hand. But I exercise it every day since then. My condition is not extremely bad but it is debilitating in pain in the morning, which subsides in the afternoon and then comes back the next morning like the movie Groundhog Day. I can still do a lot of things except I am way more fatigued. It takes all morning for me to have movement become a lot easier. I'm also working with self-hypnosis which I strongly believe in. I'm in my first few days of seriously pursuing this diet after researching it for a couple of weeks. I do have a doctor who warned me of the side effects of prednisone. He didn't know about Terry Wahls but he's open to something new and I believe I have the strength to do this. I am retired so I can concentrate on it. Ironically, I never had any medications or health problems all the way up to the age of 72, when this started last fall. Plus I always concentrated on eating very healthy, which made this all the more of a surprise. That will make the new diet a lot easier , but I still had to give up legumes , brown rice and bread. I think too much bread before this came on, with the gluten, might have contributed it. And I really hated giving up red wine. I had a lot of changes in my life for a few months before this came on and I did go off-script in my diet previously, but never to the extreme. This is all a bit distressing and I'm trying to overcome that distress. I have a very positive attitude. Thanks for your interest

John, I realized I forgot to answer your questions at the end of your last comments. I am not taking anything or doing anything to deal with the pain. I don't think my pain is bad as many that I've heard about. I've never had a problem getting out of bed oh, but the pain is very high in the early morning. After an hour moving around or just drinking coffee and reading the pain is a lot better. By late morning I can move around a lot enough that I can walk about a mile, which is somewhat painful but not that bad. The problem is when I go to bed because it gets worse from the moment I get in bed until late morning the next day. The pain is there all day but not extremely bad . So, my plan is to just stick it out, hoping that it doesn't get worse, and pursue the Terry Wahls Protocol diet. In answer to your second question about a rheumatologist, I never saw one. But two doctors agreed that it was PMR. The second doctor thought it would be a waste to see a rheumatologist to help in the diagnosis . The second doctor also pointed out something that I had already learned through my research; that diagnosing PMR is almost really ruling out many other diseases. I had already done that after seeing the 1st doctor, looking through symptoms for probably 50 + diseases. I've also learned that the ultimate test for PMR by a doctor is if you react to prednisone positively. In fact, what I've heard is that this is how many doctors reach their diagnosis ; how you react to their prescribed medicine . That seems like a strange way to seek a final diagnosis and it really bothers me. After all, prednisone treats the symptoms and controls the inflammation. It does not go after the cause. Functional medicine, which Terry Wahls is promoting, I once heard this quote from a doctor of functional medicine: traditional doctors stop thinking once they've reached the diagnosis; functional medicine doctors start thinking after they reached a diagnosis. I'm hoping this will work out, because I don't want to take any medication especially prednisone. But I'm also concerned that never say never. And who was it that said: if you want to hear God laugh, make plans

My problem with PMR when it was active is that without prednisone there was no relief. It was painful to move, sit, get up, sit down, walk and sometimes even to think 🙂 I got no relief after a few hours of being awake and it continued until I was able to fall asleep. So prednisone was my miracle relief as much as I hated taking it. So when I was able to start tapering off, I did as quickly as possible even though it's different for each of us. I lived with a small measure of pain all the way through the day I was able to stop taking it without severe pain. Now I just have the old man walk and some minor aches and pain from degenerative arthritis which I can live with. I also try to get in 2 or more 30 minute sessions of exercise of some sort daily since it helps with the mobility and flexibility.

I'm with you on never say never! 😁

My pain starts when I first wake up in the middle of the night after 2 maybe 3 hours of sleep and it affects my sleep all night long, falling asleep waking up falling asleep waking up with pain every time I try to get comfortable. When morning arrives I don't feel like I got a good night's sleep and it's pretty difficult to walk and it's painful to do just about everything but little by little as the morning progresses I feel more and more active and by noon I could go walk a mile I do that periodically. And I get better and better all the way up until bedtime. There's pain but I can be sitting in a comfortable chair or lying down on the couch or even walking around not doing too much physical movement and feel very little pain, even none until I move around too much. I can do small chores but I can't get down on the ground back up without incredible effort. It progresses to getting better by the next bedtime the next night and then it starts all over again. Keep in mind I am not on prednisone. I'm not sure if it's just a bad night now and then or if it's getting worse on a regular basis. I am working on the Terry Wahls Protocol diet, this being day 5. I haven't noticing anything yet but they say 30 days I should notice something if it's working. If it doesn't get worse than this I can handle it for a while

The only caution I would give you is to watch closely for the symptoms of Giant Cell Arteritis. PMR by itself is not life threatening, but GCA is another story.

Excerpt from article below - "If you have polymyalgia rheumatica, you are at a higher risk of getting a condition called giant cell arteritis (GCA). This involves inflammation of the blood vessels called arteries. This needs urgent treatment as there's a risk of permanent loss of your eyesight or having a stroke with giant cell arteritis."
Polymyalgia rheumatica (PMR) | Causes, symptoms, treatments: https://www.versusarthritis.org/about-arthritis/conditions/polymyalgia-rheumatica-pmr/

Yes I have read about that as a problem and that 15% of people with PMR can get it. Plus my doctor warned me about that oh, has he told me that if I do start getting headaches to notify him immediately and I'll probably have to go on Prednisone or something. In my life before this I never got headaches. Of course, that excludes the times when I was young and drank and had hangovers. But it's been many decades since that occurred.