Psoriatic Arthritis Journal - 2.5 year Update Page 63

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Psoriatic Arthritis Journal - 2.5 year Update Page 63

Postby nicoles » Fri Jan 21, 2011 10:03 am

I will start at the beginning.

In the winter of 2008/2009 I started to experience knee pain and swelling and stiffness in my hands and feet. I was in transition between living in NY and moving to LA and under a good deal of stress due to the economic crisis that started ...well, a long time ago but came to a head in the early fall of 2008.

Gradually, over the following months we moved but the swelling and pain increased. Went to a GP and mentioned it. He snapped "What do you want me to do about it? I am not a knee specialist!" and did not send me to one.

I carried on. Then one day I woke up and my right shoulder was in excruciating pain. Went to a new GP. She seemed to think it all was in my head and prescribed me some Vicoden. I did not fill the prescription. Vicoden wasn't going to solve my problem! Even I knew that.


A few weeks later I was drinking a glass of water and my right wrist exploded in pain. I went back to the second GP and told her how easy it was for me to 'injure' myself and didn't she think something else might be wrong? She again seemed to think I was being hysterical but agreed to test for lupus and RA only at my strong insistence. She seemed very irritated at me for pushing her.

Nothing came up on the tests, so she again chalked it up to me being hysterical. People all over were beginning to treat me like a hypochondriac who liked attention. I had never in my life before made any mountains out of molehills when it came to health. Even my husband refused to acknowledge that it was totally out of character for me to behave that way and started to have doubts about my credibility.

But no-one could deny the swelling in my knee. That was evident.

So I got a referral to a knee specialist, a shoulder specialist and a wrist specialist. Three MRIs and X-Rays later and nothing came up that anyone could see. I went through a total of 18 weeks of physical therapy for all three 'injuries' and nothing helped. Some even made it worse.

Went to another wrist specialist because at this point I was living in a wrist brace. He wanted to do surgery. I refused because he could not guarantee that it would work and I am right handed. he put me in a cast for 2 months to 'heal' my wrist.

By now I was disabled. I could not drive. I could not walk more that a few steps. I could not do dishes, laundry or even wash my hair without help. My husband was understandably distraught, because he had to do everything and I could not work. We eventually had to move because I couldn't earn money. But technically I did not qualify for disability because I had no diagnosis, only pain that I alone was sure existed and some swelling in my right knee. We got a computer and outfitted it with voice-recognition software so I could write from home for a little bit of income.

Things were terrible. I was more depressed than I had ever been and no idea what else to do. Finally, a friend gave us the name of his rheumatologist and I went in for a visit.

Within minutes he had a diagnosis. Psoriatic Arthritis. I was so glad to have a name for it and to know I was NOT crazy! But there was no cure and the medicines they give you for it are extremely scary. Methotrexate. Azathioprine. Immune suppressants and chemo drugs that can actually cause cancer.

I could not take over-the-counter NSAIDs - they did not help. I am allergic to corticosteroids, so no luck there.

When I expressed my doubts about taking my Azathiorpine prescription the new rheumatologist yelled at me. I was getting very accustomed to abuse from doctors.

I began to take Azathioprine. Got sick immediately. Each week I would have a new side effect and go off the meds for one or two days, then come back one for a few until I developed the next side effect.

So I began to look around and found Dr Mac Dougall's site. Did not begin right away, but did say "Hmm. I wonder if I should stop eating meat and drinking any alcohol or caffeine and see what happens?" That helped overnight, or so it seemed. A good deal of my joint pain and stiffness subsided and I was left only with the pain in my right wrist and the right knee pain and swelling.

A few months passed. I was still off and on with Azathioprine but the side effects kept getting worse. I came back to this site, read everything I could find and started 'MacDougalling' on Monday January 10th.

My joint pains started to go haywire. They would come and go and travel from place to place. My sinuses cleared up and I began sleeping better. On the third day I developed a rash all over my body and shortness of breath, both serious side effects of taking Azathioprine. My rheumatologist took me off the meds for a whole week.

Two days after that I developed a TERRIBLE migraine. Went to bed in agony at 2 in the afternoon and took only aspirin for it to avoid other gut-harmful NSAIDs. Woke up the next day feeling refreshed and with a significant reduction in my pain, stiffness and swelling.

And so my journey begins.
Last edited by nicoles on Mon Jul 01, 2013 12:01 pm, edited 2 times in total.
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Re: Nicoles Psoriatic Arthritis Journal

Postby AranMC » Fri Jan 21, 2011 5:17 pm

I just want to give you a hug (a gentle one..lol)

I know what it's like to be told it's psychosomatic, all in your head, that you're neurotic, hysterical etc, blah, blah, blah...
I spent years being told all these things.. even after I came here to Canada and went to my new GP and said, I think I have Fibromyalgia (I'd done my research) she said depression, 6 months later I went back and said I still think I have Fibro, refer me to a rheumatologist(sp) if he says not fibro then you can send me to a shrink...
I won (I think)..
But my fibro and diabetes are reversed by following the McDougall program... I still have a lot of weight to lose but that will happen...

You have lots of people here to support you through bad times and good...

*hug*

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Re: Nicoles Psoriatic Arthritis Journal

Postby nicoles » Sat Jan 22, 2011 10:58 am

Thanks so much, Aran! :)

And you know what? I am already feeling SO MUCH BETTER.

:-D
Nicole
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Re: Nicoles Psoriatic Arthritis Journal

Postby AranMC » Sat Jan 22, 2011 1:28 pm

It is good when you have people who really understand, people who know you're not being neurotic, hysterical, crazy... whatever...lol
It is also good when you are finally vindicated, although what we have are not pleasant, at least we know what the hell we're fighting against..
It means we can do our own research, find our own answers, do things our way and not as the medics want us to do.

Doctors have their place in the scheme of things but the medical profession is now learning that we no longer think of them as gods.. that we do have questions... that we do have the right to say what we put into our bodies...

Even my GP, although very nice and should know better, automatically reaches for a prescription pad.. and she should have learned by now that my answer is always no, let's try a change to my diet first then we can discuss it..lol

You are in control of your body now, there may be times when you need medication but that's your choice and in your control..

You have lots of support in here now..

*hug*

Aran
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Re: Nicoles Psoriatic Arthritis Journal

Postby nicoles » Sun Jan 23, 2011 10:24 am

Thanks again, Aran! :-D I needed that.
- Nicole
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Re: Nicoles Psoriatic Arthritis Journal

Postby nicoles » Sun Jan 23, 2011 10:38 am

I have been doing really well, and surprising myself even with this diet.

It has been two weeks and most of my symptoms are gone. I have been avoiding wheat, soy (except a few drops of Bragg's Liquid Aminos on some veggie sushi I made the other night), corn, nightshades and citrus on top of the no-animal products, no-refined flours and no-vegetable or refined oils and it is serving me well.

I also haven't had any caffeine or alcohol, because those two are substances I had already noticed an increase of symptoms from.

I definitely need to start giving more attention to eating well as in - CRON-O-METER-ing my micro-nutrients, but I haven't started that yet.

On the plus side: I have been able to take a 30 minute to 60 minute walk almost everyday, with no regrets the following day, and I have begun to stretch out my veeerrryy stiff muscles and joints.

My swelling is all but gone (one joint has the very slightest of swelling, and that is my right knee, which was always the worst and which was where my symptoms started).

Any pain and stiffness I feel upon awakening seems related to normal exercise stiffness (at least as I remember it), not to arthritis stiffness.

And side bonus!!: the rough patches on my ankles which are caused by psoriasis that I have had my ENTIRE life have disappeared! I wasn't even thinking about that until I had a conversation with Debbie on another thread and checked them afterward. I am literally stunned by this.


And for the first time in years I feel good in my own skin, literally enjoying movement.

On the down side:

I am a lot more tired and sleeping many more hours ( 9-10) than I'd like, but actually it feels like I am catching up on lost rest, so I am not too worried.

I live in an area where tasty restaurants are everywhere and yummy yet forbidden food smells are all around. I cannot say that I am too tempted, just a little bummed when I smell something I like but should not have. Although it is nothing compared to how bummed I was to be destined for a lifetime of scary medication and dependence on obnoxious doctors (no offense to nice doctors).

My doctor tired to bust a hole in my bubble and told me that all dietary changes are short-lived and that within 4-6 months I will be screaming in pain again. I asked, "Oh, have you tried diet changes with people where that happened and can I talk to one of them or do you have any studies you can refer me to?" He was insulted by the question and told me "You don't need to know that, just trust me, I know".

OH well. Wait and see, I guess.
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Re: Nicoles Psoriatic Arthritis Journal

Postby Melinda » Sun Jan 23, 2011 12:26 pm

Wonderful that you are feeling so much better - an inspiration for many people on this board! too bad about your doc - if only more doctors were like Dr. Mcdougall! :D
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Re: Nicoles Psoriatic Arthritis Journal

Postby AranMC » Sun Jan 23, 2011 12:35 pm

That's wonderful news about your symptoms...
And the exercise, a year ago it wouldn't have been worth even thinking about it... *hug*

Don't worry about sleeping too much, your body has a lot of catching up to do.. While you're sleeping, your body is healing itself, remember when you were in so much pain, even if you managed to sleep, it wouldn't have been restful, now you and your body can rest and heal.

When a doctor says "Trust me" I run the other way...(Fast!)

Keep doing what you're doing, it's obviously working, if or when you reach a plateau, you tweak the diet around some more until you find what's right for you.

Doing the happy dance for you.

*hug*

Aran
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Re: Nicoles Psoriatic Arthritis Journal

Postby nicoles » Mon Jan 24, 2011 8:34 pm

Thanks again, Aran! You are so very sweet! :)

And that is an excellent insight into the sleepiness...I forget I did not have more than a handful of truly relaxed nights of sleep for almost three years, I guess I DO need to catch up.

*hugs* to you!

Nicole
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Re: Nicoles Psoriatic Arthritis Journal

Postby wendysmiling » Tue Jan 25, 2011 10:53 am

I hope to see great things happen to you!! :D
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Re: Nicoles Psoriatic Arthritis Journal

Postby nicoles » Tue Jan 25, 2011 11:29 am

Thanks Melinda and Wendy! :)
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Re: Nicoles Psoriatic Arthritis Journal

Postby nicoles » Tue Jan 25, 2011 11:43 am

Keeping on keeping on on the diet and I am actually taking for granted how good I feel.

My doctor took me off my meds almost 2 weeks ago (for supposedly 1 week) and hasn't gotten back to me about what he thinks I should do next (one of my problems with him, actually, is that he never returns calls unless it is an emergency) so I have been medication-free for almost two weeks with only good effects so far.

Had some brown rice at a restaurant that almost certainly had some oil in it but that is it as far as 'going off' diet.

This weekend My husband and I were able to go for a 2-hour walk on the beach. Sand, my former arthritis nemesis is no longer a problem for me. I am not running or anything :lol: but still, it is a vast improvement.

One thing that I have noticed is that my flexibility is increased. Now, I used to be fairly flexible, and would stretch every day but range of movement only came to me after much hard work.

Over the last couple of years I could not stretch at all so I lost a lot of movement range.

But I have been stretching daily, just 20 minutes or so, for more than a week and I am making gains far faster than I ever did before eating this way. It feels great!

I read Peter Escogue's "Pain Free" books ( Thanks to Star MacDougaller Burgess for the recommendation) where he basically says that most joint pain is from improperly aligned muscles pulling bones out of place, and am planning to start his exercises as well.

I wonder if a certain percentage of my pain was always mis-alignment? Well, we shall see.

My husband found a vegan and macrobiotic 'sushi' restaurant that has foods I can eat on the menu for us to go to on Valentine's Day, so he is officially 'on board' although not for himself, yet.

He still has eggs and sausage for breakfast and pasta with white sauce, etc, but he is starting to become more aware of how congested he gets after every meal so I think it is possible he may try this out at some point.

I also plan to start the elimination diet after a few or weeks, it is just too much to wrap my mind around right now. I had originally planned to do it right away, but then I improved so quickly I gave myself a break! :wink:
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Re: Nicoles Psoriatic Arthritis Journal

Postby AranMC » Tue Jan 25, 2011 12:05 pm

Isn't it good to have such wonderful partners? Yaah for husbands who understand...

That's how I got my husband interested... I was doing it for me and slipped the occasional vegan meal into the diet... then he noticed how 'unclogged' he felt.. Plus I was able to talk to him about his depression and how a good diet helps with that too... he's not vegan, he's not even sugar free or completely dairy free but he is learning about the diet and the health benefits...

It's all good..

*hug*

Aran
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Supportive Spouses

Postby nicoles » Wed Jan 26, 2011 10:50 am

Yes, Aran, it is really great that my husband is understanding.

I may begin pointing out how he might transform his health through eating changes, but he is a supremely finicky eater and might have to get there himself through observing me. :wink:

He will already eat some vegan stuff, but on the heartier, fattier side, like tofu and tempeh with mushroom gravy.
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A Tasty Breakfast

Postby nicoles » Wed Jan 26, 2011 10:54 am

Today I needed more than just plain brown rice farina for breakfast. My husband was having his savory and aromatic sausages, as usual, and I just wanted some FLAVOR.

So I browned up a diced onion with a spare pinch of sea salt in a no-stick pan, added some thin-sliced and lightly steamed triangles of yams and butternut squash and browned those, too.

Near the end, I added some thyme, then took it all out onto a plate and mixed in some fresh chopped parsley.

Savory flavor desire=satisfied!!

:-D
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