CINDYSUE48's Recent Blog Entries


Wednesday, September 24, 2008

Monday: 59(S26)/32/9
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Newly diagnosed RA

Sunday, January 06, 2008

I'm 53 (54 in March) and I'd been diagnosed in my mid twenties with degenerative arthritis. A few years earlier I'd had a workup for Rheumatoid, Lupus, etc due to severe TMJ (jaw joint). At that time everything came back negative. I'm a nurse, and had several back injuries (work related), so I really didn't think much of it. When I was 28 one doc told me I'd be in a wheelchair within 2 years!

Over the years, being careful at work and home, I was able to control my back and joint problems. I'd had trouble with my back and neck, and then about 5 yrs ago started having knee pain. I was overweight, so again the doc said degenerative. Then about 2 yrs ago I started having problems with my shoulders, bursitis was the diagnosis then. (I never accepted that diagnosis as my symptoms didn't fit)

About 2 yrs ago I started having pains in various joints. At first it was just an occasional pain, no swelling or redness, so I figured I's injured it somehow. About a year ago the pain started to get more intense and moved from joint to joint after 24-26hrs. I'd have a couple of weeks of this, then everything would calm down. At one point I was told I may have gout, due to foot pain. (again, gout? I don't think so! LOL) This was also the first time any joint showed obvious inflammation, it was red, hot and swollen!

I started seeing a new primary doc last March and reported this to him. Since I had no pain or anything that day, he told me to call him if it got worse and did some blood work (inflammation markers, and Rheumatoid factor). A few weeks later I called for an appointment with a wrist that was red, swollen and painful.

Last few month most of my pain has been in my hands and arms. I mostly have pain and stiffness, but on at least a few occasions I've had swelling and redness. For the most part it's my hands in the wrist and palm area and it often hurts up my arm and into my shoulder. Curiously, the opposite of my "bursitis" which starts in the shoulders and goes down the arms!

The last couple of weeks I've had feet pain. I get these "twinges" (for lack of a better term) across my toes, the joint closest to the food. It's kind of spamsy, very sharp, hard to ignore, but fleeting. I also have been getting pain in my ankle, outer aspect. The last few times it's been both feet.

Right now both feet and my right wrist and hand hurt. The ankles have been hurting since around noon time. I had a lot of things to do today, I've just moved, and I had no choice but to walk....a lot!

For the past year I've been pretty strictly following a low carb diet with mostly natural, home cooked foods. I've also been taking both fish oil and krill oil supplements. Since starting low carb my inflammation markers are within normal limits. Prior to low carb they were elevated, a lot....they had been since the TMJ in my 20s.

When I saw the specialist He reported that my inflamation markers are still low, but my AntiCCP and Rheumatoid factor are both elevated. He thought I might be developing or about to develop RA, but these results indicate I have "full-blown RA". He said he couldn't understand why I haven't been having more severe symptoms, given my numbers. He agreed that low carb and lack ofprocessed foods was probably a good thing.

I've also been seeing Dr Eric Westman, who is very well known in the low carb community. He's pro-low carb and uses Atkins to treat patients with heart disease, diabetes, etc as well as smoking cessation, which is what I went to him for. Dr Westman has me on a very low carb diet with no grains, no nightshades, no citrus and minimal dairy. He has basically told me the lower the better on carbs. My average is about 30 grams per day. Unfortunately this move was a bitch and I was without cooking facilities for the past 3 months! Eating out more meals than not it NOT conducive to this strict a diet and after getting frustrated and bored I went off plan....using Christmas as an excuse. Since I've been off plan the pain is much more intense and of longer duration.

I'm still trying to figure this all out. I'm a firm believer that our diet plays a big role in how we feel, particularly with auto-immune disorders. Environmental toxins too, but food we actually eat and breakdown and to me that's much more dangerous to the function of our body. I've done a lot of research over the past few years and have been following a basic anti-inflammation diet for several years, except I'd have occasional grains and ate more meat than recommended. I've noticed that I felt much better on my doc's plam, but I'm not sure what is the cause....the grain or the nightshades or the lower carb levels. I'm going to follow this for another month, then add back just tomatoes, but in limited amounts. I can live without grains, but tomatoes are a big part of my diet. I'm hoping I don't get worse when I add them back!

  Member Comments About This Blog Post:

HEALTHY4ME 8/6/2011 7:42AM

    I could have written the first part of your blog, I am 54 have neuropathy issues right now in my L foot and not diabetic, I work in home care used to work in long term care but had to quit that, I have been off work since end May from these issues. I have had my L knee scoped and debrided cos of level 4 arthritis and need the R done but my gp is saying no.... may make dr apt with surgeon anyway.
I went gluten free about 3 wks ago and mentally feel better, can smell things better but not finding a lot of joint help. I started paleo a week ago and went on the strict robb wolf inflammation diet part, and I felt good the first 2 days. the 3rd was ill, 4, 5 not bad but those 2 didn't have bm, and now am constipated. I have no appetite in am, now and am eating a huge salad for lunch with my meat, and roasted or stirfry veggies and meat or fish for supper. I am under 1,000 calls day and don't know how to add them as can't have so much stuff.
Ready to call it quits,stay gluten free, and as processed free and eat less fruit. But finding it hard to not have, nuts, eggs, dairy( no problem there),extreme low carbs only from veggies, no tomatoes, potatoes and no fruit. Guess the ones I want back are eggs, fruit and nuts. the rest I can do. But wondering what you think as I found you on the paleo site. also have had for years cramps and charly horses in my calves. when gf. felt they were getting better, now the past 2 nights, I am so tight that I can't move my legs without cramps and last night even my back was tight and pain to move.
I started this cos my son feels it is great, and is what I need. He was going tos tart with me, but wasn't ready as he works 2 jobs and a baby and nother on way, so had to get his house in order, some food in and meals done. anyway I went ahead but reallly, I agree with the therory but more primal than paleo and wonder what really causes the infflammation....
long drawn out but wanted an opinion.thanks

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LISA32989 1/6/2008 1:26PM

    Pain is a big reason for my low carb lifestyle, as well. When I start with carbs, especially wheat, the joint pain returns in my fingers, hips, lower back, neck & knees. I've had several RA tests and still negative. My grandmother has it and I really don't want it. In addition to diet, I believe strength training will help to keep my muscles strong to support those joints, whether I have RA or just Fibromyalgia (which is the current dx). Also, the closer to whole I eat, the fewer migraines I have, which have plagued me since early childhood.

It really feels good to take control of your own wellness, doesn't it?

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Weigh In week 16

Sunday, June 24, 2007

Whoo Hoo!!! Down 2 more pounds!!!

I've changed my ticker to reflect my total loss and goal.

I've drastically increased my fat and protein and dropped my carbs over the past few weeks and have found my weight going down again!!

I've been recording in Fitday and taking all my supplements. I've been concentrating on getting the protein up and the carbs down.

My protein and fat intake is high. Much higher than the "experts" recommend, and that's just fine with me. I've been going for 95g protein daily and got at least that except for yesterday (Saturday). I've not been looking for added fat, but have been adding cream to any shakes I have and I've not been avoiding them.

I've been meeting and exceeding the recommended levels of vitamins and nutrients. In fact, the only thing I'm "deficient" in is carbs and fiber! And sodium, which is getting to be almost as "bad" as saturated fat. I don't add salt to many foods, but this isn't because I think it's bad for me, but because I often forget to!

I've been trying to get moving more, but I'm still not being too consistent with exercise. I've now bought a Tai Chi DVD and am going to try it for a while. It's for people with arthritis and stiff joints, so I figure it can't hurt!

I've also been doing some weights, but until I get my bench out of my son's room and into a more accessible area, this will be spotty.

  Member Comments About This Blog Post:

SPARKCAT1 8/28/2007 12:21PM

    low carb is so good for people, i just don't understand why more don't see it too. Meat, fruit , and the caveman ate. SIMPLE! I get all the fiber i need from the fruit and veg. I still take my vitamins too, have noticed how the colds stay away a lot more. Bread still calls me (on weekends), but the weight gained from the weekend comes off so easily once Monday thru Friday diet starts. This is a lifestyle i can live with too!!! And I fee much freeer...not being a slave to sweets!! you know...the "got to have it now" urges. Aren't we smart?

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weigh in week 11

Monday, May 21, 2007 did I miss this? I am "officially" no longer "obese", I'm just "overweight"!

And, I lost another 2 pounds, bringing me under 190!! Whoo Hoo!!!

Oh! And look! I have less than 30 pounds until my next (and possibly last) goal!!

I've been watching my weight closely with my diverticulitis flare and lack of appetite. Over the past 2 weeks I've been going up and down 2-3 pounds each day.

I guess I've just been to preoccupied with work and other things, but I really had no idea I'd left the "obese" category!! So now, for the first time in about 22 years I am considered "overweight" not "obese". If you've never struggled with this, you have no idea how I feel....but I think most of my readers know exactly how I feel!!

Went to see my new doc on Friday. Hopefully this guy will be my primary care doc. It's a guy I saw when I first arrived in NC and I liked him very much. I had to change docs after a year when my insurance plan changed. I've been calling this guy's office every few months for about a year, waiting for him to start accepting new patients.

The good:
Really seemed to listen to me.
Nodded his head and said "good" when I said I was following a low carb plan.
Didn't argue with me when I said I didn't believe in the cholesterol = heart disease theory.
Agreed to order some extra blood work, including ferretin, vit d, A1c. (also getting liver and kidney function tests done)
Didn't think I was a nutcase when I told him I had a glucose monitor that I was playing with and getting readings.

The not so good:
Of course wants to get my lipid levels and "maybe tweak things", depending on the results. (He looked shocked at my pre-Lipitor numbers and how strongly it affected me)
Concerned about my blood pressure, which was elevated, but seemed to accept that my readings at home were much lower.

So, more good than not. I'm curious what my cholesterol numbers are, but like I said to my doc, I will not go on any medications that is designed to lower cholesterol. I'm also curious what my A1c is. I just hope my week of higher carb doesn't change my numbers!!

The doc is also checking my blood for sed rate (inflammation marker), rheumatoid factor and ANA levels (anti-nuclear antibodies, and indicator of lupus and other auto-immune diseases) because of the joint problems I've been having. He also told me to keep monitoring it and to call him if I have an unusually bad flare or one that lasts longer than a day or two.

Blogs have been pretty quite lately, but I did want to send out a big GOOD JOB to Victoria!!! She's met her (unofficial) goal!!! She's been working really hard at this, so stop by her blog and give her a big congrats!

Also, Dr Mike has an interesting post on low carb and alcohol breath testing.

Articles in the news:
Avandia may increase your risk of heart disease and death from heart disease. Now, this is based on looking at all the studies done and lumping the data. I understand that this isn't the best way to do research, but it's an acceptable way that the drug companies use all the time. Of course the manufacturer, GSK, says there's nothing to worry about!

This is a little scarey!!! It seems some pacemakers are influenced by iPods!! Now, iPods were the only device tested, but there is evidence of interference when the iPod is held just a few inches from the pacemaker for just 10-15 min!!

OK....that's enough for now. I've got a few things to do before Heroes comes's the big season finale!! If you've not been watching this show, you're missing a good one!!! If they show reruns over the summer, check it out!! SciFi did a 20+ hr marathon last weekend, and I'm sure it won't be the last time they show it!


Weigh In week 6

Thursday, April 19, 2007

OK...I'm in a definite pattern. Once again, a week after no loss, I'm down 5 pounds!!

Over the weekend, from Friday afternoon to Sunday evening I was over my daughter's for a visit. I didn't eat much, but everything was low carb, except 1 small piece of garlic bread. My calories were only 1200-1350/day. Yesterday was better, but still a bit low.

Today, however, is a different story. I've had small breakfast, a huge lunch, and a decent size dinner....and I've had 2 pieces of sf chocolate candy. (Normally I restrict the candy to 1 day on weekend only, but missed last weekend, so had it tonight instead.) My total for today was over 1600. Again, still low carb and natural, except of course the candy.

Today I knew I had to have a big lunch. We went out for lunch to a buffet. I had a plate of salad and 4 different meats! The salad had mixed greens, cucumber, tomato, black olives, sunflower seed, bacon (real) bits, and Caesar dressing. I had a few ounces each of beef pot roast, chicken breast, pork tenderloin and some bourbon chicken. I also had a couple of small chunks of cantaloupe.

For dinner I had 3/4 of a home made pizza. A LC whole grain wrap with pizza sauce and cheese. It doesn't look like much, but it's very filling. I usually put mushroom on top, but didn't have any. Also didn't have any veggies in the house as all spoiled during a power failure.

I love low carbing!!!

I've been doing much better with my joints, although as I type this I have my left wrist wrapped and am off resistance training until it heals. This time, I think it's my fault. I've been doing upper body exercises with dumbbells and have noticed that my wrists seem weak and wobbly. After the trouble I had last week, I decided to put a wrist brace on both wrists. I have 2 different ones, but both work pretty much the same. I don't think I got the left one on tight enough, and re injured it. So...complete rest of the wrist for the next few days. I've not been doing as much lower body lately, and have been meaning to get I guess this is it.

For those that don't already know, I'm a RN and have had several job related back and neck injuries. I've also had 3 auto accidents that caused varying degrees of neck trauma. I've been told I have at least 3 "old" ruptured discs in my back and neck, arthritis in my neck and back with bone spurs in the pelvis and the neck. The bone spurs are causing spinal stenosis, luckily still mild.

I was doing great on exercising regularly a few years ago, until I was put on Lipitor and ended up with muscle problems and "exercise intolerance". Where I had once walked several miles without problem, I started having leg pain after just a few feet. I was also doing very well with resistance training, following the Body For Life program, and had at least doubled my starting weights. All of a sudden, each workout seemed to get harder and harder, and I ended up dropping weights, then stopping all together. It's has taken almost 2 years for me to feel back to "normal" with my muscles. I still don't have much strength and my endurance isn't great, but at least I'm able to reasonably exercise again. Small weights and slower pace.

I've been taking my fish oil and krill oil, and cannot believe the difference! I don't have as much discomfort in my neck and back, and really no "pain". I'm going to continue. I seem to have different levels of comfort, almost in a cyclical manner. I've noticed this over the years. Not including times when I was recuperating from an injury, I've noticed that the level of pain/discomfort came and went according to a cycle. It never seemed to be related to my periods, but a definite cycle of the pain getting worse then easing off. So I'm going to continue for at least another month, but I think I'll continue to see a distinct difference. I cannot remember the last time I was completely pain free in my entire spine! If I have that only a few days a month, I'll take it! Right now I'm taking 6000iu Fish oil and 2000mg krill oil.

I was supposed to have a doctor's appointment this Friday. It was with a new doc, and I was a bit stressed about it. I've been trying to find a new doc, but haven't had much luck. Well, yesterday I get a message that the doc has to cancel my appointment, and I can't get another one until at least mid-August! I did end up getting an earlier appointment with a different doc...and actually one I'm more hopeful of, since I saw him several years ago and liked him.

  Member Comments About This Blog Post:

CINDYSUE48 4/20/2007 10:12AM

    Hi Lisa....I've tested grains and they don't seem to be an issues, although I still eat very little. Thanks for the advice!

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LISA32989 4/20/2007 8:03AM

    i cut out wheat and it made a huge difference in my joint pain. Actually, I'm best when I eat no grains (refined, whole, doesn't really seem to matter).

If I "give in" and have a piece of bread, a wrap, or a tortilla, I usually pay with increased joint pain. Same for sugar, so I even keep fruit at a bare minimum.

I cut out tons of very healthy (and unhealthy!) foods, but they don't seem so healthy for me, if they cause me all that joint pain.

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