As I've said before - it's all chemistry at the end of the day. You have a chemical imbalance in your body that needs to be corrected. The Anti-Inflammatory diet works but additional supplements certainly wont harm. I'm now 23 weeks into all this with no MTX, occasional Eterocoxib (Arcoxia), I haven't taken a pain killer in all that time accept the occasional Arcoxia when I've really stupidly over-done it.
I overdid it last sunday on a hour and half hike with my dog and I got pain - but nothing like the pain I was suffering while on the meds and without the diet. My pain is now very definitely localised to the area where the damage is (that caused by the inflammation on the one joint since 2002) - the pain isn't doing that roaming around my entire ankle and down my foot like it used to and it isn't keeping me off my feet either.
I'm going to add the supplements from the above article to my others and plan to cut back on some of those as the new one's get into my system.
I hope someone else tries this because it feels so good to be off the meds that I want everyone to feel the same benefits and stop listening to the "Experts" when they tell you it's incurable. If I'd fallen into that line of thought I think I'd have just sunk deeply into despression while considering the future as a cripple. I am not going there! I don't think anybody needs to go there.
Congratulations on your success with diet and supplements! It is very exciting to hear. I have been planning to make major changes in diet and supplements after the new year. Before I was diagnosed with PsA, I did the Pagano diet for psoriasis (about 4 years ago). I followed the diet about 95% (sneaking the occasional glass of wine or starbucks) and within 6 months my skin had cleared about 80%. It was not easy to follow and required a lot of preparation and dedication and once I looked better I pretty much went off the diet and the P slowly but surely returned.
My PsA is pretty well controlled with mobic and methotrexate, but I do have some side effects from these, and "health" is a delicate balance. Recently I have had two teeth taken out due to infections that would not clear up. Just this morning I was at the ED and diagnosed with colitis due to being on clindamycin for over a month. So even when things are going "well" it doesn't take much to upset the balance.
I ordered the supplement you noted, as well as some others. Have you ever checked out the Pagano diet? At a brief look it appears very similar to the anti-inflammatory diet. Would love to hear more details if/when you have time!
They look quite promising those supplements don't they - it helps that they're herbs that I've heard of because some of the supplements I'm taking now seem a bit spurious (Kalawala ?). I'm taking so many supplements it's becoming a chore keeping it up. Like you as soon as I start to feel better I relax (which ryhmes nicely with relapse doesn't it! :-)).
My psoriasis was a bit of a weird thing really - I had that on my left foot - spreading nicely on MTX - for years (the pain and damage is in my right ankle). I don't know whether it was the diet, the supplements or the canesten cream I started putting on the rash but it completely cleared for the first time and now I cant even see where it was. Very pleased about that because there isn't an itch on earth to rival that one.
I haven't seen the Pagano diet - I'll have a look. I'm reading everything and anything to do with inflammation and it's actually really interesting when you get into it. The number of diseases caused by over-enthusiastic inflammation is unreal. I'm currently reading "Stopping Inflammation" by Nancy Appleton - she has a private practice in California.
I've got to admit that some days I just don't eat at all, it's getting hard to think up new things to cook with limited ingredients and the kids are getting fed up of HEALTHY food. I'd eat stew every night of the week but they wont. I've mentioned somewhere else that I only buy meat from natural farms (the body chemistry of the animals is altered to more inflammatory stuff with intensely farmed animals). No starchy foods, trying to keep off bread but I haven't found anything to replace it with that isn't over-processed rubbish.
At the moment I've got niggly pain in my ankle - I've over-walked with my furry hound Kez and poor Kez was limping too (discovered last month that she has arthritis in her wrists so she's on MSM now with me so it's more important that I get this inflammation thing sussed because Kez needs it too).
MSM is also very good for calming inflammation. I get OptiMSM (Brilliant name) in powder form - it does seem to help (and it's helping Kez because she hasn't needed any meds either tho I've got some in just in case).
Food: I found a great swap for potatoes - I cook swede or turnip and carrots together and mash them with butter, it's really nice. I started all this with green smoothies (lots of spinach and pineapple and other fruits) - eventually I ended up mainly with fruits - something to be aware of! - don't do this! I didn't realise at the time that you can create an insulin problem for yourself doing this. I didn't luckily but you can. However it did stop the inflammation - I smoothied it into submission :-). Fish is good, Omega 3 supplements make a big difference. I read somewhere that it's better to decrease your intake of Omega 6's than the increase your intake in 3's - I can see logic in that but until I've researched more I'm taking Omega 3 supplements in large doses.
The really good thing about the anti-inflammatory diet is that it doesn't need a lot of preparation or dedication really - it's just good natural foods. It's as likely that it's what you don't eat that really helps (processed stuff - anything that man has had his greedy paws on).
I'll do anything to beat this, although I know the operation to sort out the damaged joint is inevitable, I have at least stopped the systemic inflammation and vastly reduced the swelling and pain. And I've got off that horrible drug! I'm in for an MRI next month to see about the damage - my rheumotologist still thinks I would be better off on MTX! The man must be a complete moron - I have less pain, less swelling, I can stay awake, think and concentrate now and I'm not getting anymore BOILS! I've had 3 boils! Nobody gets boils now-a-days surely! Why the hell would I want to go back to that!?
Anyway, looking forward to the new supplements arriving (though mine will take ages because I'm in the UK) - meanwhile i'll continue with the stuff I'm doing now. Oh - I bought a water purifier to and another jug thing that alkalizes and mineralises the water. I drink a lot more water now. It's so nice not to be suffering the side effects of MTX and it's really nice to annoy my rheumatolgist by replacing his poison with such as liquorice and other supplements - he's really not happy with me at all. :-)
I just got my Zyflamend today and wondered whether you got them in the end. You'd have got yours a good bit faster than I did. They look really promising.
I've tried lots of different things that haven't worked, it's cost me a fortune. The meds and "Expert" thing is my opinion from my personal experience. From what I've read the health care in Canada is a lot better than it is here in England. Our "Health Care" consists of disease management only - then it often appears to be prescription on the assumption that you'll go away once you've got your drugs and they hate it if you hang around and ask questions - especially if you appear to be reasonably well informed. My rheumatologist is a lovely man, he's really nice, but when he's insisting that I continue to take a drug that's actually making me worse it gets really annoying. The previous specialist was horrible, it was all he could do to speak to his patients, nobody liked him.
I've studied a lot of science subjects over the last few years, chemistry and physics being my favourites (these were Open University courses - not just dabbling on the net), I only have certificates in natural and contemporary sciences, not a degree yet but that's where I'm headed. Because of the chemistry I see something in this illness that can be altered. I changed my body chemistry, as evidenced in my blood test results, with the supplements and foods that I ate and, I think, more importantly, the foods that I stopped eating.
I have pain now but I know the taler navicular joint has significant damage so it's normal inflammation and normal pain - not pain and inflammation to any degree that I had while on methotrexate. MTX did nothing for the pain for me, neither did it reduce inflammation or modify the disease so as to stop it causing damage - that may just be that me and MTX just don't agree with each other. All that's bad enough but when I realised that it was also messing with my head as well as elevating my white blood cells and the enzymes in my liver I thought "What the hell am I doing?" so I threw MTX away (not that I'd suggest anyone else be so reckless).
I hope what I'm doing will help someone else though I'm aware my PsA could flare anytime (Christmas wasn't too good but if you'd seen what I was eating I wasn't too surprised when I suddenly couldn't walk far and struggled to sleep because of the familiar pain). I'm back onto it all now and things appear to be easing off thankfully.
I hope your pain continues to be under control and I'm sorry nothing you tried worked for you. We're all different and react differently to things - I feel lucky that I've reacted positively with what I'm doing now.
Have you had surgery on the navicular? If not do you know what they do? I've been told that they want to put in a solid rod and I'll lose the bit of movement I've got left (but the pain will go he says). I've seen images of the process but I've been told by a chiropodist that there is a bar with a swivel joint that can be used. I wondered if they had different methods in Canada?
At the moment I can stand the pain, it comes and goes - usually if I sit for a while I get up and get immediate pain that stops me walking. Most times I can work it gently and it diminishes reasonably quickly. What puzzles me is that while on MTX I had pain all the time and those times when I sat and then stood the pain would be excrutiating and I couldn't ease it off. Since coming off MTX I have minimal pain and when it does come I can shift it more often than not.
We're already looking for the best surgeon to do the job but it wont be until I'm really stuffed on walking. This is what I'm angry about - I was told that MTX would stop the inflammation from further damaging the joint and it didn't do that, it didn't do anything for me really. I see now that it's a godsend for others and I hope the damage to the joints for those people is limited by this drug. From what I've read there doesn't seem to be a consensus that MTX is a DMARD for PsA.
I gathered that the ankle was the most complicated joint to operate on, I used to say that given a choice I'd have rather had this in my elbow or wrist - but then for a couple of weeks last year it made an appearance in my left shoulder, elbow and wrist and I was nearly sick with the pain. (Careful what you wish for :-)). Yes I'll wait until I'm in serious trouble before I let them do this. Thanks for your input Trees :-)
trees said:
hmm sounds like an ankle replacement to me. If you opt to have this type of surgery you will have ROM (range of motion) limitations. I am not sure how much. I suspect quite a bit. I have a friend who shattered his ankle and lhas had it fused. He is limited in his walking. Now he did shatter the bone so that probably explains alot. From my understanding of ankle surgery or ankle replacement is not as refined as knee replacement nor does it last as long. A fusion lasts longer but has other ramifications. ??? . It really comes down to pain. With my TKR's I am very happy with the ROM I have but there are limitations. My rhuem nurse said ( after I told her what the surgeon said) that now you walk on it until you cannot stand the pain anymore. Can you stand the pain? My rheum also says when I have to have surgery on my ankle he will pick the surgeon and he will be one that specialises in feet . I am thinking he has someone in mind already. I personally will wait until I cannot stand the pain . I have to admit I should have had my knees done immediately. One I had the one done I wanted the other done right now! Hope this helps somewhat. I would wait on the ankle as long as you can. when you get o daily narcotics you want to book your surgery.:)
I've been struggling with this ankle thing since 2002 but I know my bones are strong (had a bone density scan several years ago and my bones are denser than the average person thankfully). The thought of not baring weight on the ankle after surgery for 2 months, or 3 they told me here, is a bit mind boggling - I cant imagine how that's going to work! My ROM is pretty much like yours now, I can do up and down but side to side is a problem and the calf muscle in that leg comes and goes pretty quickly, at the moment it's going because I've had more pain recently (but then I've done a lot of walking and I've been stupidly forgetting the supplements and eating the wrong stuff over Christmas).
Thanks for the pictures, gruesome as they are :-). The chiropodist who was telling me about the swivel jointed rod was just treating my foot for something else and we were just talking about it - I wouldn't be seeing him for this problem but I found it interesting that there were options. I might go see him again to find out more because I haven't been able to find reference to this jointed rod on the net and I want to know where he's got his info from.
Listening to you and Trees I realise that Im very lucky in that I only have to one affected joint - it must be hell to have this nightmare in more than one. The thought of going through all that only to have it fail is depressing to say the least. My biggest fear was that I'd have this joint sorted and the pain would start someplace else.
I'll know more after tomorrow when I have the MRI - then I'll have a better idea of what the damage is and what my options are. But I will wait as long as I can before the surgery because at the moment I can deal with this.
We have some top-knotch foot/ankle surgeons here too apparently - but I don't think they'll operate out of Scarborough hospital somehow (has to be the worst hospital anywhere and that's where I'd end up). I think I'll have to go private to get a really good surgeon - best start saving my pennies now! Thanks for your reply, I hope you're ok.
tkrlady said:
A fusion of the affected joints of the hindfoot is the most common surgery used to treat patients with flatfoot or arthritis of the hindfoot. A triple arthrodesis is a fusion that involves all three joints in the back of the foot. Occasionally, the joint on the outside of the foot is not fused if there is minimal to no involvement of that joint (this is at the surgeon's discretion). This type of fusion eliminates the side-to-side motion of the foot, while preserving most of the up and down movement.
If RA is only in one joint, then a fusion of just that affected joint may be all that is needed.
I hope you are well. I did buy the supplements, but have yet to start the diet or supplements because I got sick over Christmas break. All the antibiotics for the tooth infection/extraction landed me in the hospital with c-diff colitis. It has been a long recovery and my rheumo encouraged me to wait until after my GI system has fully recovered to start changing my diet. You can google Pagano diet. He is a chiropractor here in NJ that based his regimen on leaky gut syndrome. It is very difficult to adjust to, but not so bad once you get used to it. The upside is that you lose weight without even trying:).
Also I went to a chiropractor/vibrational medicine provider the other day. She was impressed with the Zyflamed. She also said I showed sensitivity to gluten and casien and recommended taking enzymes with meals to help digestion, as I have bothersome stomach issue too.
Here's hoping for a happy and healthier 2012 for all of us!!
It's interesting that the Pagano diet pushes alkaline foods and forbids some foods that the anti-inflammatory diet recommends. I was trying last week to find a balance between high anti-inflammatory foods that were alkaline too - failed up to now because I keep getting focused on one or the other. Today I had anchovies because they're high anti-inflam and I've been eating lots of salmon too - both of which the Pagano diet forbids. I think alkalinity is important, a lot of things are too acidic - I didn't think about the fish thing being acidic though. I'll have a rethink about that. Alkaline water is a good thing though - I've been drinking that for awhile - I want one of those water alkalisers but they're so expensive, I'm just using drops and a mineral jug at the moment.
I hope you're feeling better soon, the Zyflamend might be a bit powerful to your stomach while you're still feeling fragile though wont be so bad if you take them with food maybe. I take mine on an empty stomach but my stomach seems to be made of cast iron thankfully.
Hope things pick up for you from this day on! When you get the hang of the Pagano diet can you please post us some recipes, I'll have a look at sussing out the acid/alkaline content of some of the stuff I'm eating.
