Degenerative Joint Disease

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At this point my GP thinks I might have Ankylosing Spondylitis. Basically it is a form of arthritis that affects the spine and major adjacent joints.

Aka poker/bamboo spine what this disease does is fuse vertebra and impinge nerves as it attacks and destroys hip and shoulder joints...


In the last two months or so, I've gone from having a nagging pain in my right hip to being almost incapable of walking!


I really need to be able to walk to get from class to class at school and I need to be able to walk to do my current job as well...



I'm a month away from an appointment with a rheumatologist that might be able to help but might not....



Right now not being able to sleep due to chronic pain and not being able to walk are huge problems...


Any advice on how to cope would be greatly appreciated.

i would start applying for disability NOW as it is a long arduous process...man that is scary hopefully you dont gt paralyzed.

On tip id give you is megadose vitamin d3(not d2)(15,000 units pr day) also have your hormones checked and consider testosterone therapy. This will help maintain your skeletal structure

I have rheumatoid arthritis which has some meaningful similarities. As with you, there was a >1 month gap between diagnosis by the GP and seeing a rheumatologist. Once I saw the rheumatologist, I was put on anti-inflammatory drugs. It is generally the rheumatologist not the GP who prescribes these because it's important to pick exactly the right one at exactly the right dose which does require a specialist. It took another month for the drugs to reach full effect. But they really do help. Hopefully you will be given a prescription for whichever one is right for you (there are many choices- which is why a rheumatologist needs to choose).

What to do in the meantime while you wait for the rheumatologist to see you and choose a medication? I did something pretty unorthodox. It may not be do-able for you but it helped me and if you can, it might be worth a try. What did I do?

I did a series of one day fasts. I would eat normally, then fast for 1 day. Then eat normally for a couple days. Then fast again for a day. I did a total of about 4. Here's a link with advice specific to that.

https://sites.google.com/site/cureankyl ... nt-fasting

It sounds ridiculous but if you follow the links within that link you will see the research is there to explain why a short fast would ease the pain. The main idea is that inflammation takes a lot of bodily energy. If you fast, your body looks immediately for ways to save energy without compromising function. So inflammation is the first thing to go. This is the wisdom behind the old advice to "starve a fever".

On the plus side, the pain went away while I was fasting. On the minus side, it came back when I resumed eating. This is the general pattern unless a person can continue the eat/fast cycling long enough to stop the inflammation for good. Google will find you some anectdotal stories of people who saved themselves from the pain of inflammation caused by various autoimmune diseases, but they usually had to do this eat/fast alternation for a couple months.

I had the willpower to do it about 4 (or 5 or 6, can't remember exactly) times total (willpower coming from the ease of pain, which is very motivating) but I stopped after I got drugs from the rheumatologist.

It's something to think about and experiment with. That link has some other ideas too.

^^^^^ Thanks! There are some really interesting ideas in your post.

I used to fast once a week. I actually stopped when I started having sleep problems. I've been eating more, hoping that the extra calories would offset all the fatigue from the disease and lack of sleep.

I am definitely going to try cutting back on calories in general and go back to fasting.


As far as meds go, I was eating naproxen like candy (to less and less effect). Then my GP put me on meloxicam and it made me extremely ill....

Right now, I'm taking salsalate. It helps a bit, but not enough to let me sleep well.

The only thing, so far, to give me any relief was a very heavy course of prednisone + salsalate...

Too bad prednisone has so many side effects.


Hopefully, the rheumatologist can hook me up to the right stuff.

Sorry to hear you are going through this! I'm dealing with chronic back and neck pain that is worse at night and, so I can't sleep, either. I can empathize.

I'm struggling to get an accurate diagnosis, in large part because I was hit by a drunk driver about a year and a half ago and it seems doctors don't want to take me seriously because they all think I'm just trying to magnify my injuries in order to cash in from an insurance settlement or something. (For what it's worth, the guy who hit me was homeless and living out of the vehicle he hit me in. This is definitely not my big chance to strike it rich).

I've been told many times that it's just a soft tissue injury, despite getting really painful inflammation in joints in my upper back and neck. The last flare-up I've had has been agonizing and is not responding to any of the stuff I've used before (NSAID's, heat/ice, various herbal supplements and exercises, etc), plus it is now like I have a knife in my back when I lie down, which is new. (Before, it was sitting at work or in a car that was painful, now it's those two things, plus lying down). So, I'm trying to get in to see a specialist, but can't get an appointment until the 17th. And, honestly, I doubt he'll listen or do anything when I do see him, like the other doctors before.

It's really frustrating to not have a clear diagnosis, since that just adds to your stress and makes it impossible to know what is best, in terms of treatment options. I hope you can hang in there and will keep watching this thread, in case anyone has any other helpful ideas for you, since they might be able to help me, too.

@blueroses

Wow, I'm sorry you're having so much trouble figuring out what's wrong... Having Doctors who won't listen is just insult piled on top of injury.

It's not like I know anything, but it sounds to me as if you might have pinched nerve and/or disc problems. My GP said that you really could not rule discs problems in or out without doing an MRI.

If you haven't had one of those, you might discuss it with your doctor.

As for myself, the diet/fasting thing has helped quite a bit. I'm not pain free, and sleeping is still not great, but I'm walking a lot better...

Thanks, I actually just got the results back from a set of x-rays on my cervical and thoracic spine today and they just revealed mild degenerative disc disease and bone spurs. The bone spurs, as it turns out, are right at the areas where the pain seems to be radiating from, so I have the feeling that one of the bone spurs might be causing a pinched nerve. Who knows, though, if there is anything else going on, since I have a variety of symptoms.

I spoke with a nurse about getting an MRI done and she told me they would try to get it pre-authorized, but it was likely that my insurance company would want me to do physical therapy and pain injections to see if that would help before allowing me to get an MRI. It doesn't make sense to me that they'd want to pay for treatment prior to knowing the full picture of what's going on and I am apprehensive about deciding on treatment options blindly, but it is what it is, I guess.

Anyhow, since you are looking at dietary interventions, I'd recommend trying to do a Mediterranean diet, as well taking tumeric and holy basil supplements. They can be really helpful in controlling inflammation.

That certainly makes sense about the energy inflammation must use, I had an MRI scan that revealed mild disc degeneration, though I think mine is caused by one leg being 3/4 inch shorter than the other following a motorcycle accident, what I notice is when its hurting, my lower back is really really hot to touch compared to the rest of me, must be using a hell of a lot of calories to do that, maybe it will help keep me slim.

Inflammation starts in the gut and snowballs to other parts of the body as the feedback loop intensifies. I agree that a fast may be a good idea.

The western diet is extremely pro-inflammatory.
Cut out gluten and dairy. Avoid all other grains and simple carbs. Eat more green things and proteins that have a lot of omega-3s vs. omega 6... fish and fatty meats, avoid red and lean meat.

Your body takes what it needs from your diet and uses it to rebuild your body daily. If your digestive system is compromised (even if you don't feel it) it wont be able to properly provide and you will develop deficiencies that will affect other parts of the body.

Every auto-immune issue (maybe autism itself) is a direct result of industrialized food and medicine. Anti-inflammatory drugs are in-fact MORE inflammatory in the long term and are only designed for acute relief...if you want to heal yourself, don't trust big pharma or the pushers they call doctors.

^^^

Yeah, I'm eating as gluten free as possible, still eating a bit of cheese and yogurt. The rest of my diet is a small amount of fruit (usually berries with plain yogurt at breakfast), with the balance coming from non-starchy veggies, leafy greens, and meat.

I'm probably eating a bit too much red meat, but I'm going to make a point of eating salmon at least twice a week.

I am just now getting over a nasty bout that started Friday. It started right after I did my Economics final (and after a week of finals)...

I'm wondering if it was caused by stress?

Just out of curiosity, has anyone tried eliminating nightshade vegetables from their diets to help with joint problems? I recently found out that I have early osteoarthritis in my neck and am considering giving this a try to see if it helps at all. I've already been gluten-free and dairy-free for the past six years, so I'm not thrilled about eating an even more restrictive diet, but figure I could give it a shot. There haven't been any studies that have found a link, but there seem to be a lot of people who believe it's helped them a great deal.

^^^ Well, I don't eat potatoes, but I avoid them because of the high starch content (which definitely seems to cause flares for me).

As far as I know, tomatoes and peppers are in the nightshade family too. I eat lots of salsa without bad effect.

Along with testosterone, TRT is steroids, it's replacement testosterone. Prednisone is replacement cortisone. So for TRT, you'd have to get labs done and whatnot. Going with the steroids, though, maybe human growth hormone? That's mostly what athletes use HGH for, healing up injuries, it's how NFL players get back on the field so fast. One other steroid to try is Deca-Durabolin, it supposedly regenerates collagen in joints. Deca would probably be VERY hard to get a prescription for, HGH sorta hard, TRT fairly easy. For a "light" thing, you could try DHEA. Just do a low dose, don't try the like 300mg type bodybuilding doses. My mother has fibromyalgia and tried it, and it gave her energy and relieved her pain, but for her it ended up converting to cortisone I guess? She used to take prednisone a ton, but had to stop because she got cellulitis in her legs from it, and DHEA made the cellulitis happen again. DHEA is a precursor to your body's steroid hormones, as in your body makes DHEA, then it makes other hormones from DHEA. You can buy it OTC in USA, right at Walmart even. Most other countries it's RX only, though.

Going with food therapy, if you make homemade bone broth, that's where they make glucosamine from. They get bones and dissolve the cartilage off. So you can make bone broth and add some vinegar to encourage the cartilage to dissolve. It's quite neat, when you refrigerate it, it turns into chicken broth jello, once you get it hot, it'll turn back to soup, but yeah. You can try to add more fat to the diet to get more hormones, as your body manufactures hormones from cholesterol. Egg yolks would be good for this. The "more hormones" approach might not work, as your body might simply turn them into ones you don't want (like what happened with my mother and DHEA.) But bodybuilders like Vince Gironda would eat like 18 eggs a day and stuff to try to mimic the effects of steroids. Food type stuff like this unfortunately sorta falls into the realm of "broscience" though. I've had some success personally using some Chinese medicine food recommendations in my life, with Chinese medicine food therapy. It doesn't sound "scientific" but it works for me.

For herbs, lastly, you should try Eucommia bark tea. It's a Chinese herb. I have some and it's labeled "strong back tea." It raises libido, warms you up a bit, and from what I understand, it's sorta steroidal in nature. Not an actual steroid, but working more like a selective androgen receptor. It's like $2 for a box at my Chinese market, so if you got a Chinese market near you, see if they got it. If you're seriously interested in trying it, I could send you a box. Other herbs, you could try adaptogens like ginseng, rhodiola rosea, etc. I love rhodiola rosea, but never used it for pain relief. Going with the Vitamin D thing, shiitake mushrooms have a LOT of vitamin D and boost immunity. What I do is, get dried ones, put them in food, and drink the broth as tea, it tastes sorta like beef broth.

Oh well, good luck.