Crps full body and head /face /mouth

Posted , 6 users are following.

Hello all. I have crps 18 months. It started in my left ankle after a sprain.  Within a few months I was diabogosies and worked hard to get off crutches.  To this day I still don’t use them.  12 months into it things starting going wrong. It spread to all limbs neck back hips....   I am not sure if nerve blocks was to blame but all treatment was stopped. I am chemically sensitive to medication.  Medical marijuana is not available in the country I live. I use cbd oil. It’s ok. 

Now it’s gone into my face gums mouth. This is a new challenge for which I am not coping so well with.  My pain last week hit a 10 when a dentist tried to make an impression of my teeth for night guard.  It was not s good day I never had pain like this in my life.  

Eating is difficult this week. Above all this I am positive person and wonder was all the medical intervention and chemicals from meds making me worse. 

Any advice would be grateful appreciated.  I have 3 young kids one is a toddler.  So as you can imagine daily life is impacted severely. 

Thank you 

0 likes, 38 replies

38 Replies

Prev
  • Posted

    Good day!

    Just wanted to throw in a few practical tips for prepping nutritious meals: When you're trying to switch over to eating a higher fat, moderate protein, low carb diet, you may initially find yourself doing one or both of the following: 1) Buying expensive foods  2) Buying prepared foods

    If you are absolutely on a very tight grocery budget, it can seem pretty overwhelming, because you are having to stand up in the kitchen and do more preparation than you may have been doing since you got the CRPS signs and symptoms. Truthfully, even though I'm a basic biological scientist and a nurse, there were days when I was getting pretty teary-eyed from fatigue by supper time. I wished I could justify just tossing a frozen, prepared cheesy-mac dinner into the microwave and be done with it, but knew if I went back to my old way of eating, I'd just feel that much worse as a result.

    My situation is slightly unusual in that I'm vegetarian and my husband is not. But it is just the two of us now that the kids are all grown, so I have only two people's tastes to consider now, instead of five.

    I was an athlete a lifetime ago as well, and as I noticed that over time, the CRPS symptoms waxed and waned according to the weather, etc., it occurred to me that I could approach what in healthcare they call "Activities of Daily Living" as if they were interval training exercises for, say, track and field events.

    This means that on "good" days (I watch the weather online, so I know ahead of time if a storm is coming and act accordingly), I thaw out one or more large pieces of meat so that I can cook them in a Crock Pot or covered dish in the oven. These tend to be inexpensive cuts, that are best cooked low and slow. We are lucky enough to be able to buy in bulk each Autumn from a local beef and pork farmer, but whatever is currently on sale at your local grocer works just fine, too. I season in such a way that versatility is built in, as each roast, etc., is the basis of 3-6 meals over the course of the next few days, plus snacks for my husband as needed. One way and another, these meats tend to produce a moderate to large amount of juices which I save to put over grains and veggies, or to make the base for a soup or stew, for my spouse. They are nutritious and delicious, and take no extra work whatsoever on my part.

    I cut up pasture-fed cheeses and good-quality prepared luncheon meats into 1-inch chunks, and keep them in a covered container in the fridge.

    I keep hardboiled eggs and boiled or baked chicken on hand in the fridge as well, particularly as a cool protein snack in summer weather. My husband also likes full-fat cottage or farmer's cheese for a change of pace now and again.

    I buy raw nuts in bulk, and keep them in the freezer; removing some each week to a covered container in the fridge or on the counter, for cooking and snacking.

    I keep full-fat pasture-fed yogurt, and butter, in the fridge at all times; small amounts of these foods daily help to keep my skin healthier and my digestive system functioning optimally. People with CRPS often have an imbalance in gut bacteria, that contributes to their inflammation, and therefore, their pain: See in the literature: SIBO. When really disabling, antibiotic therapy may be of a big help to some sufferers.

    Ditto unrefined, organic coconut oil, which is solid at room temp and does not need to be refrigerated.

    I buy the big bags of mixed berries and thaw as I need them, to top yogurt or eat alone or with a few nuts, or very occasionally, a bit of whole whipping cream, unsweetened or with stevia only.

    I cook up whole fry pans full of low-carb mixed veggies, as I can buy bags of these frozen in winter, or from farmer's market in summer. I mix it up a bit by adding some tomato sauce or chunks (Not too much, as tomatoes have a surprising amount of natural sugars), for flavor. Or I'll mix in some curry spices, or for Asian flavor, soy sauce, a hint of agave sweetener which is much less likely to cause blood glucose spiking/insulin release than refined sugar, by the way, garlic and onion bits or powders, and/or even a bit of paprika or cayenne just to change things up now and again. In one day, I can make enough cooked veggies to go with most of our hot meals for 5-7 days; I clean and refrigerate raw greens enough to last for 3-5 days as well, for luncheon salads. 

    My spouse is Hispanic, and in his case life is not worth living if he can't have rice. So I have learned to cook rice in several different ways: I'm your basic Scotch-Irish American gal, so potatoes have historically been more in my line, but unfortunately, potatoes have a high glycemic index. This means that too much of them in your diet will make you release insulin to the point that you may feel ill, weak, mentally foggy, etc.; and if you have insulin resistance, you will also get fatter. I tend to eat a small(perhaps 1/2 cup) serving of rice, quinoa, or beans once a day, several days per week, but always later in the day as this is most of my carb allowance for a 24 hr. period and so optimally consumed as I prepare to wind down for the evening. If I eat these items at my early afternoon meal, they will stop ketosis and make me drowsy at the very time that I'm attempting to be most active in my day. Incidentally, I haven't totally kicked my potato habit: If I crave potato, I simply make a few slices of it in a big veggie fry-up, much like another cook would use water chestnut; that way I get the taste and the texture, but not the blood sugar spike. And it keeps me from eating an entire bag of chips by my lonesome!

    I keep tofu and a few better-quality meat substitutes in the house at all time; there are a lot of good low-carb choices these days, but beware: Some vegetarian or vegan meat substitutes are actually grain- rather than legume-based, and so are surprisingly high in carbs and (sometimes) nasty-tasting as well. Beware the ones based on vital wheat gluten, especially; they may have artificial flavors and colors as well. You need to avoid these additives, including the wheat gluten, if possible. There's increasing evidence that CRPS is at least in part an inflammatory/autoimmune condition for many sufferers, so the cleaner your diet/fewer common allergens you take in, the better off you will be.

    Just FYI: Water or green tea is probably your best bet, always, for fluid intake. Be especially wary of diet soda pop, as it has no carbs to speak of but is absolutely NOT your friend in any other way: The phosphoric acid is bad for your digestive system, and creates a situation metabolically that robs your bones of calcium over time. I've seen Xrays and bone scans of women in their 30s and 40s that you would swear are those of their grandmothers instead, based on bone loss (read: Osteoporosis). CRPS tends to produce some of these same unfortunate changes, though you can moderate this by continuing to eat right and exercise/weight bear with your affected body parts as much as safely possible. So you need soda pop like you need a hole in the head.

    And before I forget: Here are my rescue recipes for when you are craving carbs or craving sweets to the point where you feel that if you had a black balaclava and a .44 Magnum you would cheerfully rob your local convenience shop of all their junk foods... Assuming you were having a reasonably good CRPS symptom day, that is!

    Popcorn for salty cravings: 1/4 to 1/2 cup organic/non-GMO popcorn (No judging wink ) in a couple tablespoons organic coconut oil. As this is popping up in your covered pan, melt 2-4 tablespoons butter and a bit of onion or garlic salt. Toss onto popped corn and stir well. May add a bit more sea salt, a tablespoon of good-quality yeast flakes, a pinch of curry powder or cayenne, or powdered mixed veggie and/or powdered mushroom extract. Yes; it's your entire carb allowance for your average day, but it's also a lot of fiber, fills you up, and (as above) keeps you from eating an entire bag of chips.

    If you are craving Asian-style salty rice crackers but don't want the MSG that often comes along for the ride, buy or toast yourself over a flame or on a flat pan in the oven: Nori seaweed sheets, like are used to make sushi. Speaking of which, sushi in general can satisfy as well; just look out that it's not made with sweet rice. If any rice in there, it needs to be what the Japanese call "kitchen rice". And ofcourse, the sushi that is all seaweed, sesame seeds, and meats, fish, or low-carb veggie such as celery or green onion, etc., is tailor-made for this diet, with no guilt necessary. One more caveat: Whitefish is almost no carbs, but some shell fish comes with a significant amount of carbs. It pays to read the labels on seafood products, just in case.

    For sweets craving: Two cups raw mixed nuts of your choice (if you use almonds you need to halve or soak them for several hours, as left whole, they become rather like little rocks when prepared as follows) mixed in with two to four tablespoons of organic coconut oil, melted, and 1-2 tablespoons maple syrup or agave. Add salt to taste, and your preferred spices such as cinnamon, nutmeg, powdered vanilla (even vanilla extract will do), and ginger if you like it. Bake at 320 degrees F for 20 minutes total. Some people do the baking on parchment paper, but I have done it with and without and there's really no difference that I can see. You can stir halfway through the baking process, but once again, I've noticed no difference here. Just be sure you take the nuts out of he oven at the 20 minute mark, because past that time they will burn very quickly! Taste a nut or two, and if in need of more salt or sweet flavor, sprinkle a bit more sea salt and/or powdered stevia on the nuts. Let cool completely. Now, if chocolate is on your mind (No judging, again!) Melt good-quality chocolate bar or chips (at least 60% cacao) in the microwave until you can stir smooth. You can add a bit more coconut oil to expedite this, if you are using a high percentage cacao. For 2 cups of roasted nuts, a bit less than 1/4 cup melted chocolate will work well. Drizzle the melted chocolate over your cooled nuts. Allow to harden. This takes hours; I'm not sure why. And it's hard to wait!!! But try not to eat it all at once, with your fingers, off the pan, while still warm... Not, ahem, that I've ever done so. No siree... Anyhow, leftovers keep very well for at least a week, in a covered container at room temp in all but the hottest of weather.

    Do I recommend the above as daily, or even weekly foods? Absolutely not. But they will keep you feeling much better, and keep your carb intake down compared to going entirely off the wagon due to cravings. The thing I've found is, cravings get fewer and further between as you go along, but in the very early days of eating high fat, moderate protein, and low carb, you do get cravings. And any upset, such as a flare in your condition, an injury, a new therapy or drug, can also trigger cravings you thought were well behind you. Be gentle with yourself; if your "treat" foods are as nutritious as possible, you don't take several steps back in terms of your health and self-esteem; you just take a brief "vacation" and very easily slip back into optimal nutrition mode with nary a hiccup. 

    Onwards and Upwards! smile  

     

    • Posted

      Thank you so much Sabrina for taking the time to share the details of your diet. I'm printing it and will follow your advice.

       

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.