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Mystery Exhaustion, Joint Pains and Stomach/Intestine Pain

I am a 28 year old female who has been struggling to find a source most of my symptoms. I've only recently had access to health insurance that would allow me to really dive into testing, but everything so far has some up negative.

I currently suffer from extreme exhaustion, lower abdominal pain after eating, daily joint pain and arthritis, migraines and sever headaches, flu-like symptoms after strenuous activity (working out to hard or long days in the sun) and frequent ear pain and ringing.

I know that I have Pseudoachondroplasia. It runs in my family, and I've been seeing a rehumatologist to try to help with the inflammation, but since it's not a wide spread disorder all we've been able to do is mitigate the inflammation with antiinflamatories and stretches. Pieces of my cartilage near my joints frequently break and get stuck in my joints, particularly my ankles, knees and elbows.  She has tried some testing to try and pinpoint the source of my fatigue as well. All thyroid test come back as normal, but my b12 is always low. My first test was around 200 and I have a hard time keeping it about 600.

I started seeing a GI doctor because of the lower abdominal pain and for heartburn. We did an endoscopy and a colonoscopy. The test showed no signs of chrones or celiac, but my stomach and intestines are heavly inflamed and my esophagus shows acid damage, so I'm now on two anti-acid pills to help combat my anti-inflammatory medication.

I've completed a sleep study that showed no unusual sleeping disorders, though when I described my complaints they thought it might me mild narcolepsy. I generally get 6-7 hours of sleep and sleep mostly through the night, but I can't make it through a day without nodding off or loosing concentration.  They put me on nuvigil (low dose) to see if that helped, and it did for about a day. By day 2 I stopped sleeping completely and they said that it was the lowest dose they could give me. So I stopped and never looked back.

I've seen a neurologist for my migraines/headaches and was put on three different medications which only made my headaches worse or gave me side effects that were just as bad. I currently take BUTALBITAL-ACETAMINOPHEN-CAFFE only to help treat an active migraine. I won't go back to a neurologist unless I can find someone I trust. My experience was that unpleasant and I'll leave it at that. From my journals and study on my own, I have classic migraines, sleep migraines and sever sinus headaches.  

I've tried gluten-free diets (before insurance we thought it would be worth a try) and low sugar diets, but nothing has made much of an impact. I've done food journals to identify patterns with stomach and headaches, but the patters switch. The only consistency is heavy dairy is always bad. I'm going to try an anti-inflammatory diet next.

I've been to an acupuncturist who tried everything they could. They could clear my sinuses, but I got no other relief.

I tried a chiropractor and my neck, wrists and back are in more pain than they were before.  

I'm at the point where the chronic daily pain is getting to be too much. I'm so tired that I don't have any energy to learn. When I have free time, all I want to do is rest. Its really difficult to focus and most of my interests aren't enough to push me any more. I'm not afraid to try and test things, but I was so sure that chrones was going to be the answer. (the colonoscopy was the most recent test I've had done). I honestly don't care if I find out that what I have can't be fixed, but if I know what it is, I can at least make choices to make the best of what I'm going through.

I would love any suggestions for people who are struggling with the same issues. Thank you!!!!!
2 Responses
1756321 tn?1547095325
My mother had severe GERD/LPR and severely painful bile gastritis (causing severe stomach inflammation - the acid blockers worsened her gastritis btw). I took her off acid blockers and started her on betaine HCL with pepsin supplements to increase stomach acid production (low stomach acid is the most common cause of acid reflux/heartburn) and digestive enzyme supplements to also help with digestion.

It took weeks for GERD/LPR to resolve and over the months her health improved (she had a long list of health conditions due to poor absorption of nutrients). Gastritis improved slowly over a year.

NSAIDS drugs are a common cause of gastritis. I think if you sort out your inflammation you might find your other health issues improve. When the stomach lining is inflamed, it produces less stomach acid and fewer enzymes.

Excerpt from Enzyme Stuff - gastritis...

"Question: It is true that you are not suppose to use enzymes if a person has gastritis?

Reply: This is a little tricky. Yes, most places have a disclaimer saying that if you have gastrities, avoid the strong protease formulations. There are some enzyme products with low or no proteases that are for gastritis patients (like Gastro from Enzymedica).

However, there are lots of clinical studies which clearly show that taking proteases significantly speeds up healing of ulcers, gastritis, and wounded tissue. Which looks like you would specifically want proteases with gastritis. So what do you do?

Here is what is going on in the gut:
Proteases help reduce inflammation, clean out debris and infection, and stimulate healing. The can result in clean, yet exposed tissue that is very sensitive.

Think of a sizable infected wound on a skinned knee that just won't heal. The wound is sensitive and inflammed. It's raw. Nerves are exposed. As you attempt to clean it out and remove the cruddy infected tissue, it hurts. The raw nerves are exposed. It might also bleed a little.

As you apply antibiotic, it can really sting badly with sharp pain. But this process is needed to stop the infection and enable the wound to heal.

Now consider this same situation happening in your gut where you can't see what's going on. You might take proteases which are doing the cleaning work. But you experience some stabbing pain, stomach ache, irritation, and might see a little bleeding. All of this is very alarming if you aren't prepared for it. If we didn't know what the antibiotic on the skinned knee was for and why it stung, we might conclude that antibiotics are bad for skinned knees. And thus the warning for people with gastritis taking enzymes.

But proteases might be exactly what you need to really heal. So one strategy is to take an enzyme product with low or no proteases to help the body heal more gently and still get the benefits of enzymes for overall food digestion. (Carbo by Enzymedica, any of the broad-spectrum enzyme products such as Zyme Prime or Thropps). With gastritis I think Carbo or something with very low proteases would be better.

Then dose the proteases separately so you can control how much you are taking in (such as Peptizyde, Purify by Enzymedica, etc). If it is uncomfortable, reduce the dose. The wounded tissue will heal, just at a slower rate. Some people like the quick, tough-it-out method, but I really like to avoid pain when I can. There has been excellent success with this approach of separating out the strong proteases for those with very injured guts.

If you start an enzyme product and have stomachache or pain, the general recommendation is to stop the proteases for 4-5 days, then start again slowly. This allows the clean but raw and exposed tissue to heal up a bit and be less sensitive. Just like allowing a cleaned out skinned knee to form a 'scab' so the healthy but exposed tissue won't hurt as you move around. If the pain persists again, discontinue the proteases for awhile.

Healing doesn't usually occur overnight and some patience and steady persistance may be in order."
Thank you, Red Star! I really appreciate this. I haven't explored this route. I wen't back through some of my tests and I don't see any references to my acid levels in my stomach, but I'm going to bring this up at my next appointment.

I think you are absolutely right regarding the inflammation. If I can find the source of that, I'd be in much better shape.

In your mother's case, was she also on NSAIDS medications when she started taking these supplements?  I would be interested in getting off of them to give something like this a try, but right now I'm on Meloxicam (with Calcium-Magnesium supplements) daily to try and keep up with the joint pain. I read up some on Betaine HCL and the meloxicam and butalbital sound like a bad mix.
1756321 tn?1547095325
My mother has bile gastritis (bile flowing back into her stomach - had her gallbladder removed years ago) so if she stops taking her supplements containing proteases the pain returns.

Unless you had this inflammation prior to taking NSAIDS, it would seem most likely the only cause of inflammation are the NSAIDS drugs.

I thought I'd better check taking betaine HCL as well as NSAIDS and found this info from SCD lifestyle article "4 common betaine HCL mistakes"..

"Mistake 1: Using Betaine HCl When You’re Not Supposed To

In Dr. Jonathan Wright’s book, Why Stomach Acid is Good for You, he explains that:

“HCl should never be taken by anyone who is also using any kind of anti-inflammatory medication such as corticosteroids (e.g., Prednisone), aspirin, Indocin, ibuprofen (e.g., Motrin, Advil), or other NSAIDs. These drugs can initiate damage to the GI lining that supplementary HCl might aggravate, increasing the risk of gastric bleeding or ulcer.”

"Solution: if you’re not sure if you should take Betaine HCl, work with a skilled practitioner that knows about low stomach acid. And when in doubt… don’t use it. Instead, consider trying Digestive Bitters, which are a safe, natural stomach stimulants that can restore normal stomach acid production in some cases."
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