It sounds like you have Dercum's disease. Go to lipomadoc.org to see the only doctor doing research on this very rare fat disorder. Also, you-tube it.
Ah, thanks for your lovely note Alice. Don't give up. I'm going to get to the bottom of this if it means going to medical school myself. I'm not joking. I am making progress getting to the bottom too. I don't want to say too much because I don't want to lead others down a winding path but I would say.... read....read....read.... because you WON"T get answers from your doctor. Cough cough... I tried YET AGAIN to see a doctor yesterday. $50 down a drain. WHAT AN id**t. I guess I have to cut her some slack. She only spent a stressful *I mean SHE was stressed* 10 minutes with me and I have been reading for HOURS A DAY on how the body works and specific illnesses related to my particular symptoms. Ten years ago, we patients could not do that. These doctors KNOW their jig is up. Now, we as "the people" have to TAKE BACK our health and HOLD THEM accountable for information, REASONS WHY they are prescribing drugs, LINES OF THOUGHT they are following.... THEY DON'T LIKE IT. I don't want to make them my enemy, I want an ally (spelling?) but as SOON as they can tell you have taken control of your body and decisions pertaining to it, they can't dump you FAST enough because the truth is.... they don't have the answers and are not willing to put all the pieces on the table and look at the puzzle WITH you. Therefore, the rule of their game is this: Let me tinker with you MY way with no explanations needed or find another doctor. To me, ,that's an invasion of my rights, it's dangerous to my health, and it's expensive to the patient, expensive to the system at large, and it's all around BAD BUSINESS. And, there is absolutely NO spirit of kindness, goodness, caring, or nurturing involved in it. It is simply control freaking. It brings me back to the mentality of the days of the slaveholders which I abhor.
Anyway, as I said, I am making strides. I have just begun to walk again. I mentioned earlier that my body ached so much and my right heel had chronic tendonosis for over a year straight with maybe only 5 days total in between when it did not hurt. I'm walking which means I can possibly give a little nudge to my cardio. My blood pressure has been all over the charts lately....WAY up high... then down below normal within an hour. My blood sugars are the same way. One minute, I'm a diabetic, then next I'm within the high normal. I'm not a junk foodie. I eat very healthy but I had not done that my whole life. Since I was so active, I ate pretty much whatever I wanted to most of my life. Looking back now, I realize how poorly I fed myself. Until I got sick, I truly did not know how to eat. And, I almost NEVER drank any water. And, we have been victims of a capitalistic and greedy food industry. I mean, I love capitalism mixed with Christianity. But, to only look at the dollar when deciding how food is processed is a crime. Health should come first, not profits. So please keep in mind that we have ALL been poisoned by our food and 90 percent of the choices in the supermarket are hazardous to your health. Only the strongest of kidneys and livers can maneuver through modern food. And, don't forget about the fructose and the pancreas. It's really a nightmare. So, it takes a realy good intellect and education to do meal planning for a family today Alice. Here we are.... knee deep in that dilema as a country. AMERICA IS SICK! Not just you and I. But, what makes me different than your average middle aged, overweight, ailing person is that I'm not going to lay down and be a victim.
I'm a few years down that road now. This is what I think. If we can both correct all the little problems in the cell's structure that happened along the way and give the cells time to regenerate healthily, we can correct these problems. But, if we bombard our bodies with prescription drugs, the body will be in so many altered states that it will be darn near to impossible to let the body heal. You have been very proactive Alice, as have I. I just want to ask you a few things: are you taking a really good Fish Oil supplement? Are you taking a Vitamin D sublingal supplement? Those two things are a must for people with our symptoms and they have improved a few of my symptoms DRASTICALLY. Also, are you taking your blood pressure and your glucose with a glucometer several days a month throughout the day? These numbers are just like getting lab work done and can help guide you in your quest to pinpointing the culprit of the problem. If our doctors will not assist us, we have no other recourse but to take the long way to the solution by getting it ourselves. We can do it. I will wait to hear your answer. Like I said, I'm on the verge of cracking this nut. I need some lab work done to keep me going in the right direction and the only stumbling block is getting that lab work done. I think in this country you should be able to purchase your own lab work. Don't you? So much for freedom. Kym
PS: Alice, what is the group on Facebook? I'm not on Facebook but I'll get on it if I can find you guys.
Kym
Alice, I'm not on Facebook but tell me how to find your group there and I'll get an account! Thanks, Kym
Hey Kym!
Boy, am I ever GLAD I met you, which is the whole reason for all this? I know in my heart to stay away from doctors and I will get into this at a later date. I didn't even finish reading all your post, as soon as I type this I will, I had to jot a quick line!! There are several groups on Facebook just type in Dercum's and see what pops up. I have replied to several sites so far. I actually have some good ideas on there.
Last night was the 1st night in months that I actually slept through the whole night. It IS getting better, the less I put in my mouth. I have really switched up what i eat and I begin each and everyday with cups of warm water. Like me on Facebook, see me on Pinterest. I too have been reading but sometimes I get very depressed about the whole thing and click each box closed and go out in my garden.
I won't be so scared if things keep going like this. We really have to talk sister, I am so grateful for you, a voice of REASON in this whole mess. Some gal named Rita insists I get in touch with this doctor who is doing a study. ;) I mean she is insistent?! She replied to your post and mine. I will be back but 1st, let me finish your post.
I'm gonna be 59 in a couple of weeks, how old are you Kym? Thanks!
YOU ARE AWESOME!!!! I think we could be sisters. I lost 200 lbs about 25 years ago. I kept it off till my mom died. I, officially, have gained 100 lbs back and that was 18 years ago. I have always been phat, I was born phat. Being phat is not for everybody but I enjoy it. It's who I am and while I realize it's not society's "norm" I never really bought into society. I am ol' Deadhead. Spent much of my adult life naked, sitting for artists. I have a hard-on for the ar-tist! So, I am not the norm when it comes to going to the doctor.
Next, did you take a lot of antibiotics as a child, say, birth to 8? I did. A lot. who even knows how much. I always had an earache which is why I really smiled at YOUR toothache! Do you have a toothache? How did you pick that moniker? I pay attention to everything and read into everything as well. I'm an impath as well as an intuitive which how I've been able to avoid doctors most of my life. I gave birth to my second child ALL BY MYSELF! It was wild and I really am a tuff b***h.
Back to the antibiotics, did you take them. It was very popular to give kids lots of drugs in the late 50's-60's. I know for a fact, from the reading I have done, THAT simple act messed me up big time. Good for you Kym, reading, it's the only way. I have really been debating going to get this diagnosed. On a total WHIM I quit working 2 years ago. Never could figure out why I did that until now.
This X-mas I bought a popcorn maker, a theater style with a kettle. Good Lord, I didn't realize, it, along with two bottles of Eggnog, would set me on a path of no return!!?? It was after those simple acts that I had what I'll call a "flare-up" to the point I had to do something. So I Goggled Painful fat and I met YOU. Here I am. Funny, hun? There are no accidents, I'm a Unity gal, I believe in EVERYTHING and NOTHING which is why they called me Alice. BTW, I worked in a health spa, the only fat woman there, they had no idea what to do with a happy fat lady. That's how I get to sit in a steam room anytime I want. A pool. Machines up the wazoo to help me on my quest to good health. I'm lucky, I LIKE to move, I've danced my arse off all my life. When in doubt, twirl. Dead motto.
Kym, I will be back. You don't have to "belong" to look at Facebook or Pinterest! You'll be able to see pics of me and my pugs! They keep me going, needing that walk every evening.
Alice in Wonderland
Alice, I am so sorry for the delay in reading this post. I've been so BUSY.... been feeling so much better lately in every way. All the changes I have made to live healthier are really impacting me very positively. And NOT ONE of those changes was suggested by a doctor. Keep that in mind. And, the suggestions doctors have made would have cost me another $12,000.00 and I would not have had any permanent fix, only been XRAYed, scanned, and pumped full of pharmaceuticals. The BODY was designed by a creator and he/she is the SMART ONE. This body is designed to survive and heal itself. When we pollute it and get away from feeding it the way the Creator designed, I believe we derail it. Then, we turn to physicians who give us 12 minutes every two weeks, don't really CARE about us, and don't want to put all the medical pieces on the table for US to look at WITH them. In fact, I can tell you this. They don't even put all the pieces on their own table before they have their PRESCRIPTION PAD out. I used to work in the medical business and Alice, it sure is UGLY! And, doctors are SOME of the MOST unhealthy people you will ever meet. Are we stupid? This country needs to LEARN HOW TO THINK again so we can take back our health and take back our communities.
Anyway, I am feeling much better. It took me a lot of time to understand that going to a grocery store is like shopping for nutrition in a garbage dump. There is some fresh healthy food in there - maybe one whole aisle worth in the entire store. And, going out to eat is like getting a side order of poison each time you do it. So, I have stopped going out to eat. My body was COMPLETELY depleted of Vitamin D. Our bodies really need that vitamin. I read many CURRENT studies on D. Most studies show that 80% of us are too low on our D which also means our Calcium and Magnesium is probably low too. None of the doctors I went to know anything about vitamins. Idiots! We are SO MUCH of what we eat and drink and breathe in. Yet, no conversations take place about food, water, or sleep. NO TIME.... they only have 12 minutes for ya! That's no joke! And, even if they MADE the time, they do very little research into food. The ONLY physicians that seem to care about diet are Cardiologists. But, by time you need THEM and actually can get to them and pay for THEM, you're in pretty bad shape. Don't fret. There's still time if you take back your health.
I would love to share all I have learned with you Alice so that it could help you too. I am so glad you are feeling better. If you want to feel like you are dancing on top of the world, ELIMINATE WHEAT and get the book "Wheat Belly Cookbook". I am not saying this transition will be EASY.... swallow swallow.... I struggle each and every day with it. Why? Because ALL THE FOOD sold that you don't have to labor over in the kitchen CONTAINS WHEAT. It's easy to go for a day without wheat but darn near impossible to go a week without it. Oh, and when I first started to take control over my diet, I had terrible stomach pains after I eliminated it and I got angry because I couldn't eat it. Just be ready for that should you pursue it. I'd recommend only going 3 days at a time. But, fast for the day before you start. What you will see, I am sure, is that you begin feeling so good. If you can, purchase some coconut/almond milk blend. It is sold in my grocery store now. Another sign that many people are catching on to the toxins that are plaguing our livestock and sickening THEM. The FOOD INDUSTRY is poisoning us Alice. The doctors then get us when we begin to have serious problems and, instead of correcting the original problem which is our poisoned food, they pump us with chemicals that alter our body's natural healing system. Then, our vital organs are left picking up too much of the slack.
Obesity is a symptom of bad health. The body was not designed to function at it's best in an obese state. The fat cells store dangers toxins (and many are metablic toxins) which accumulate in our fatty tissue and muscles and act as hormones. They block insulin receptors. Some fat contains estrogen receptors. To be really healthy, you don't want to have a high BMI. That only makes sense when you understand how the body works. Please do some reading so you can take care of that glorious gift that your creator gave you. Doctors know we don't want to hear that so they don't tell us. Instead they give us pills.
The end goal is to love our neighbor but we need the body as a vehicle to do that. We need to be able to have a cheerful dispositon and it's hard to do that sick, tired, and in pain. We need to be able to walk easily, breathe easily, and DO FOR OTHERS as opposed to sucking the energy from them because we are always in need because we're sick and cannot DO. Being healthy has a ton of benefits: spiritual, physical, financial, mental, emotional. I choose health and I know you do too so let's get to work and knock the mystery of illness out of the park. It's really not all that mysterious! Then, let's go out there and help all the other sickies who "Don't WANT TO KNOW" how to help themselves. I know at least 100 - how many do you know?
I have bypassed one very important piece of information because I have overcome it now but it must be spoken about. That is SODA. I personally believe soda is behind our obesity epidemic and our diabetes type II epidemic in America just as much as wheat is, probably more because of the consumption amount. If you don't believe me, do what I did. Get a Glucometer and take your blood sugar 3 times a day while drinking soda for a week. Then, STOP DRINKING IT FOR A WEEK and drink distilled water instead - just as much of it as you drank of the soda. Then, start taking your glucometer readings 3 times a day again. But wait.... don't be pumping Little Debbies or Hostess Cakes in the digestive system. No other sweets for those three weeks or the information will be skewed. You should be alarmed at what the soda does to your blood sugar levels - especially if ya drink the mega sized 44 ouces. None of this is rocket science. There's a wealth of information out on the net about how many sugars are in a 44 oz soda and what that kind of volume of fructose does to your liver and pancreas. Soda consumption is up, obesity levels are up. Diabetes stats are up. That's a good place to start. Also, take your blood pressure. You may be alarmed. The average reading should be around 120/80. Write down your numbers for that two weeks. That's not a lot of research to do and you can do it on your own. If you do that while you attempt to eliminate wheat, the results should shock you in such a wonderful way. You will KNOW how the two most prevalent foods in our American diet are making you, personally, sick. Please let me be a resource to you. You are too vibrant of a woman to be weighed down by illness.
Oh, and as far as those antibiotics go, all I have to say on that topic is YES. I was given antibiotics for 7 years when I was a little child FROM MY DOCTOR whom my mom TRUSTED. I believe leaky gut can result from prolonged antibiotic use and the American diet we feed ouselves ON TOP OF leaky gut. That is a direct pathway to obesity, and illness, and nutrient depletion. I'm sure that was part of my original problem as I had digestive pain long before any of these more pesky symptoms appeared. And, what was my scholarly doctor's response to that? SEVEN laxatives a day. They are not God. They are not even that intelligent. How much has he thought about ME over this past 13 years that I've been suffering and have not seen him? Take back your health Alice. It's not too late as long as you can think.
There are 2 things I've added to my diet that have catapulted me back to good health and I'd like to share them with you. I'm not allowed to share them on this website because they are specific product supplements. But, they are great. I believe that's what has really taken me to the next level. How can I reach you? You can write to me at
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. I spelled it out so it will not get flogged right away. Hope we can talk. Kym
Wow Alice. Getting rid of the sugars are really hard. It takes a STRONG CONSTITUTION to do it and looks like you you've got what it takes to put mind over matter in the food department. That's REALLY hard for most people and was really hard for me for about 6 months. Now, it's just being creative enough to do groovy things with blah veggies. I'm not a really creative cook. I don't like to cook with sugar, flour, chocolate, or milk so it's very limiting.
I am having a very difficult time getting my Facebook together. I just have no idea why it's so difficult. I'm going to ask a friend to help me out with it this morning. My printer was broken. An 11 year old fixed it for me yesterday. Yup, I'm THAT inept when it comes to my devices! Might as well admit it up front. It's really held me back too with music because I write some great songs but never was a whiz with the electronic gizmos. Well, I'll eventually get it all worked out. If you see weirded out things on Pinterest, that was me trying to figure it out too. I REALLY don't understand the function of that yet. Again, I'll get it with some help.
However, the health journey is going great. Still feeling better on those two products I told you about. I gave away lots of the first one - to 5 friends who I KNOW will be honest with me about it. Waiting to hear the results. I don't want to keep recommending something that ONLY helps me. I'm going to see if I can get some of your herbal recommendations. I live near an herbalist and maybe he will have some. Always worth a try, huh?
I wanted to see if I could get a list of your health issues, clearly understood, to see if I can start doing some research for you. I'd need your blood sugar readings, your cholesterol levels, and your blood pressure readings and any other lab results you've had done. That doesn't ALWAYS show something I've found. You can be the sickest person on Earth and still your blood work is fine. But, sometimes, there's a CLUE. Doctors don't always take the time to follow up on subtleties. Any way I can help, I'd like to. I just CANNOT imagine, on the diet you are on, how ANY problems could be coming from food. ESPECIALLY given the fact that you eat the food you grow too. That amazes me because I am under the belief that our bodies are mainly sick because of what we eat. I'd love to talk to you more about it. I know of a reputable lab where you can get hormone testing done fairly inexpensively - relatively speaking - without the interference... I mean coordination ... of a doctor. I'd look at hormone testing for sure unless you have already. From what I know about you already - which is very limited - it doesn't sound like auto immune. It sounds more to me like something on the cellular level - something maybe amino acids or a particular vitamin set (Such as the B group) and some high grade FISH OIL may improve slowly over a 6 month period. That's why I mentioned those two products. But, those are stabs in the dark without the lab work and vitals. I KNOW there's an answer here Alice. I just DO. The body is WONDERFULLY COMPLEX but the key word is WONDERFULLY. It was BUILT to survive. If we can just figure out which little circuit is off, your wonderful health can be restored and you can move on to helping others. Wishing you the best. I THINK I gave you my phone number on the email but I'll be sure to send it to you. I am not that busy this weekend with appointments and if ya have a chance I'd LOVE to speak to you too. Thanks for being so diligent. Other people who read this will learn from the time we are taking with ourselves. Don't ANY of you out there give up hope or totally put your well being in the hands of your physicians!
Kym
Too late to reach you tonight but just wanted to let you know I got your message and I'll talk to you sometime tomorrow. Have hope. Nothing is impossible. There's a reason for everything. You just have to work at peeling back the layers. The Master Architect designed His creation to work! Kym
Hi Janet and Mark! Just wanted to let you know that I did read your message. It's too late now so I will be in touch sometime tomorrow. What a good friend you must be. Have hope. The Master Architect designed these bodies to work. Sometimes, you just have to peel back the layers of an illness. It CAN be done with a little diligence and some disciplined changes. We live in a verrrrrrry toxic world.
Kym: I do want a list of what you are taking and why! Just post it on my page. Remember, you can always google to figure out how Facebook works. I have to do it all the time, they always change stuff! :(
Hi Alice... I just got the message you posted 2 weeks ago. I had to freeze my home internet for awhile. Went off the intro rate... yada yada yada. I'm going to give it a try here and hope for the best:
1) Omega XL fish oil. NO OTHER Omega compares with this one and it is the ONLY ONE which got rid of my inflammation and body pain (muscle, tendon, fascia, joint). You can get their order nmbr off their website but PLEASE give my name for referral. I think I get a free bottle credit for referrals. KymBade
2. Zija Supermix. Loaded with Amino Acids (ALL OF THEM) and super rich in B vitamins which help fight inflammation as well.
3) Biotin: Good quality. Not sure about the mg but I take it about 3 times a week. It helps to lessen the damage to my hair and skin from the Psoriasis and it works GREAT!
4) I think this is the MOST important of all the above: ELIMINATE STARCH and DAIRY. Not easy... darn near impossible but it creates the turning point.
That's all folks!
PS: Tried Muscle Testing the other day. Nothing popped as being awful. Might try it one more time. Going to try foot detox too. Chiropractics certainly feels good but at $40 A POP, have to realize it is not making that much of an impact so will probably tone it down to once every two months.
Good luck all. Love you!
Hi, Kym! I came across your story when I Googled painful fatty deposits. I have been reading one of Brendan Brazier's books called "The Thrive Diet". I read that you said you feel better when you eat a certain way. Brendan eats along the lines of what you are trying, and I think you will find more nutritional information about what to eat and not eat. He explains what each food provides for our bodies. He cuts out a lot of things including dairy. No meat. I read a lot and have never read anything like this.
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I will be starting the 12-week meal plan in a couple of weeks and am looking forward to better health! : ) I hope and pray for the same for you! It looks like you're on the right track!