I know, you are probably thinking... this woman is a wreck! I actually take no medication. I refused all the medication through the years as I knew they were "stabs in the dark" and some of the medication I was offered a long time ago is now known to be very harmful to the body. I would not refuse medication if I knew what was wrong with me and it would actually help the ROOT of the problem. I do not advise medication for pain. I also work in the medical field in practice managment and will advise people that their doctors "bad-mouth" their patients when they are on pain medication and point to THAT as the motivation for their visit. Some days are unbearable for me. I have two elementary aged boys and am now a single mom. I've had a hell-of-a-year with moving, being left to mother my children almost completely alone, and living here in a state where I can't even buy insurance because of my pre-existing illness. I have not been able to get my brain MRIs every 3 months because of that. However, I did get one five months ago, but I missed 4 of them. That definately has put me out of my comfort zone.
In addition to the symptoms, I have saved all my labs along the way. My amylase was so high, my doctor could not make sense of it and, YES... it did company severe abdominal pain. He acted like it was a bad reading. Smart for a college-degreed professional, huh? Then there was an abnormal bilirubin, a positive ANA, and a near-diagnosis of Lupus. So, yes, I will admit all these symtoms are widespread but someone trained in medicine should be able to scratch the surface.
Bottom line: My disorder effects the muscles and tendons. It causes deposits in my fatty / fascia tissue. It is causing my vision to be very blurred with floaters in my field. It has caused a brain tumor as well. My abdomen is chronically swollen and my most recent small bowel series showed an abnormal amount of mucus in the small intestine. Those are the facts.
I have read up on metabolic disorders and believe that is my problem but I can't be sure, nor do I know who to see for that. If you have these same symptoms, I would love to hear from you. I have had these problems over the period of nearly 30 years and it's just getting worse as I get older. If you can recommend a doctor or a hospital, please, again, let me know.
If I can help YOU in any way, please let me know. But honestly, I cannot recommend any good doctors except for perhaps, a good brain surgeon..... uh... let's hope you don't need that kind of help. Actually, the brain surgery was not worse than these ongoing syptoms for nearly 30 years, believe it or not!
I know that God has everything under control but I've prayed and prayed. He's seen me through crucial moments in my life. Perhaps, he will help someone through this website. Perhaps a doctor will read this and actually CARE! I do believe in miracles!
My email is:
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Seems like many people are developing weird digestive and auto immune problems. The more common our national illness seems to get, the more distant and un-communicative our healers are in response. Allied Health works better for me than traditional medicine. Those practitioners still listen! They also don't assume that we are human guinea pigs when it comes to medication. Though it may not be the quickest route, try massage, accupuncture, colonics, and OF COURSE eat those veggies and fruits and eliminate soda and all bagged and canned foods. Only fresh raw food will give you the most enzymatic impact. Also, find out when your local Health Fairs are. You can get your basic labs done for a fraction of the cost of going through a doctor and at regular lab rates. Lab work is easy to read. The labs flags any testing that is too high or low and you can read up on what each item measures on the internet. More doctors, at the point where you are at, is not only going to impact you negatively emotionally but I'm guessing you are probably maxed out financially from it. And, as we are all aware, this is not the time historically to need medical care. Most people are lucky if they have "UNaffordable" health care. It sounds like after years of paying for degrading doctors the only thing you walked away from was a successful tumor removal from your brain surgery. Count your blessing there!
I would give up on the medical "experts" who think so highly of themselves and so little of you! There comes a time to cut your losses sister. If it were me, I would travel another route. You're not dead and that's a good thing. But you ARE resilliant. Take a right turn and try something new. God is still with you and your miracle is right around the corner. He is the great physician! Don't give up seeking solutions, just try different ones. I am rooting for you.
Hey... thank you "commonsense"... lots of good advice. I think that if a surgeon could just biopsy some of these fatty pads it may shed some light but I could not convince anyone to order it. Acutally, I have noticed that the attitudes of most doctors is getting more combative. I think they feel threatened by anyone who reads medical journals and has questions to ask. They treat patients as if they are enemies just because we want to be a part of the solution and UNDERSTAND how they are viewing the problem WITH them. I'm not an id**t. I'm the one suffering. I'm not going to blindly trust more chemicals being put into my digestive system without understanding the WHY. I am now getting massages 2-3 times a month. I was blessed to find a compassionate, skilled therapist who is very reasonably priced. She always greets me with a smile and is happy to help others. How refreshing! It only helps for about a day or so but it's temporary relief to really sore, tight muscles and tendons.
It has now been 3 years since I wrote that original post. I have actually gotten much sicker. I have tried Obama Care for pre existing illnesses... FOLKS... VOTE THAT ONE DOWN! And, after an additional $6000, I still have yet to get anything from my medical providers. But, on a good note, I've discovered on my own what the culprit is: it's starch! Hard to believe that all these problems could be coming from a whole food. Can't figure why. I do not mean just gluten... potatoes, rice, corn, as well as wheat, pasta. Man, when I eat a bit of it I get the weirest stymptoms: lumps throughtout my fatty tissue, terribly stiff muscles, chronic nerve pain, neuropothy, chronic tendonitis, and my latest and greatest is the ugliest psoriasis all over my back, both ankles, arms and scalp for the past year. I don't know why I cannot eat starch but I guess it's a blessing to know that's one of the causes. I'm glad I didn't rest at the fibromyalgia diagnosis, or the classic "stress" diagnosis. I'd rather be a vegan than to blow out my liver or kidneys from using prescription drugs for the next 30 years. Wish me luck. Now I have to learn how to eat a completely different list of items than I have grown accustomed to. No more bread, cereal, rice, potatoes, crackers, pancakes, burrito shells, tortilla chips, pasta... oh the list goes on. I have been trying to conquer this diet.. it's the hardest thing I've ever done... besides being in chronic pain every day and losing the joy of living to disease. Too young at 47 to give up. I'm not a quitter nor am I a sucker (to all you doctors who wonder why I won't just shut up and take a pill).
For the other people out there who have similar symptoms: I suggest a google on "dercum's disease", Carol Sinclair's book, The IBS Diet which deals with the starch issue and it's connection to Ankylosing Spondylitis...very cutting edge research on the starch connection to the autoimmune disease, and Suzanne Somers' recommendation on food intolerance ELISA testing kit from Life Extensiono Labs. Please write in if any of these reads provide you with any help. Also, a good read is the Mcdougal Diet. There's a man who has a testimonial on that website which sounds like mine but he's got a success story. His name is Burgess Laughlin. He has suffered so much. Best wishes, don't give up. I won't either!
i too have the same issues with my legs and feet as you and about 4 years ago got this lump under my skin on my left shoulder blade it started out the size of a golf ball and is now the size of a small Brest just missing a nipple :) anyway the doctor told me that i shouldn't be concerned people get them all the time and there is not much they can do for them but if it continues to grow than and i feel pain he will look at it more deeply,well thanks doc i thought let wait until i get cancer:/so this is what i know, god made the human body to heal its self when we eat the right nutrition and drink plenty of water,but since both of these resources that we use are nutritionally inept we suffer with all kinds of illness's, so what i am going to try and you mite as well give a try is order some real nutritionally pack vitamins organically produced the ones i know of are shaklee vitamin's,a bit higher priced than the ones you can buy at the store but they 100% pure! no fillers'' no preservative and the shelf life is 90 days its food in a bottle:)no lie, i have taken them off and on through my life since i was a kid at home my parents use to sell them, and they are not sold in the store but you can find a dealer on line, i am 54 years old and have been pretty healthy most of my life just now starting to have some things go wrong with my health so i am going back on shaklee been awhile since i have had the money to afford it but now i can ya! so you should give it a try its what our body's need to heal its self with and may god be with us all who suffer because the doctors care only to get paid:)good luck and god bless you:)
Wow, exactly what they told me at Mayo Clinic in July 2011. I had seen several doctors, specialists etc, and I was always laughed out the door. My pain had been getting worse, I had two lipomas when I went to Mayo, after all the others had done test after test after test, and I mean in several cities. The Mayo doctor said I was fine, there was nothing wrong, and "don't worry about the lipoma, its nothingD"d Well that lipoma has been joined by about 50 others, again I went begging for help, finally an endo dr said he thought it was cushings, tests came back saying it was not. He said Dercums, and I had no idea what he was talking about, and wondered if he did. I am off to California, for an appt with Dr Herbst on April 22. I live in south GA, and its a long trip, and the expense is certainly going to be a hardship. I have heard of the CVAC chambers doing great things for people, but there are few across the U.S. I was reading on the tailbone pain, this is my new pain, it has been awful for the past few weeks. I am going to try acupuncture, after all, we have nothing to lose. I take the noni juice and grape seed extract, I won't comment, since i have only been on it a week, so time will tell. I have tried EVERYTHING for pain, NOTHING IS WORKING. I am also depressed, which isn't helping anything. I love reading others posts, as I am sure we are all seeking answers or suggestions. Lori
Hi. This is the woman who posted the original blog. I just wanted to comment on supplements, vitamins, etc. Of course, it is very important to eat right. HOWEVER... I don't believe any of this problem is the result of eating chips or drinking soda. I say that because I have eaten a good healthy diet for many years. But, over the past 12 months, I have gotten a vitamin profile done as well. I was deficient in D and some Amino Acids. I am fully stocked up on D now, I have not eaten anything from a bag, a can, with preservatives, or dyes for over a year. OK... Maybe I have very very very seldomly, but I've been very careful and have kept food diaries. I have also taken supplements: high grade Omega 3 and 6 and Biotin. It did not help ONE BIT !!!!!!!! My hair has grown but the fatty tissue tumors that swell have continued to multiply and I continue to gain weight. I think it's more like 2 pounds a month. Over the period of 2 years, it begins to be a problem. I even tried the QVC product that promises to melt belly fat. NOTHING HAS HELPED! I just wanted to let you know that I've already been down that road. Noni Juice is not going to fix this.
I do have some questions for you though: What is the "CVAC chamber" you spoke about? What does that stand for? Also, what is an "endo" doctor? Wow, you have to wait until April to see the doctor? That's a long wait. I hope he helps you. Please see if you can get one of the tumors biopsied. I don't see why none of these doctors will do that.!?
By the way, I live in middle TN. I'm going to try to post my nbr. Call me anytime but please keep us posted on your progress.
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So very glad to find these posts! At last I have some answers even though these are not the answers I wanted. As soon as I can compose myself I will be back....
well, at least I know what's going to kill me!? I've been doing my reading, and yes, I have this. For many years.
Wow, what a story! My son was very sick years ago and I wouldn't give up - I first brought him to Robert Wood Johnson Teacher's Hospital in NJ an he was diagnosed with Wegener's Granulomatosis - an autoimmune disease. Then I got him in to a clincal trial at the NIH in DC. He has also gone to the Clevland clinic. If I were you I would try to get an evaluation at a teaching hospital or at the NIH or Mayo clinic. The NIH will pay for you to come and be part of their study and the care is wonderful. Take care and never give up - there are some really special doctors out there -my own doctor has called me at home twice!
Thank you so much for taking the time and effort to reply. Sounds like you went through much too much yourself. I keep chugging but it has been 3 years since my original post and I still have YET to find a competent traditional medical physician who has a wit in their head and a sign of life in their heart. But, I am so glad that YOU have and that your son was taken care of. I'm going to google that diagnosis to find out just what he has. Thank you again.
I am still ill. I have educated myself about the functioning of the body and now have a very good idea what's going on with me. It's an event that happens when I eat. I eat.... then, usually within 10 to 15 minutes, my right heel starts burning with stabbing pain, my right hip becomes extremely stiff, my breasts swell, my entire belly swells (to give you some idea, it looks like I'm 8 months pregnant), and then all the posture muscles in my back stiffen. I still have sores (which have been diagnosed as Psoriasis) on my ankles, back, belly which burn. That's the reaction right after I eat but I have a whole other set of symptoms wihich persist and that I have to deal with on a daily basis... all horrible.
I have tried food elimination diets. My conclusion is that it is all food except fruit, some veggies, and fish. I have not to date yet been able to cross over to a full vegetarian since I also have big problems with grains and dairy. So, I am not sure if it is a large number of food intolerances or is it a digestive problem across the board. Anyway, I believe this digestive problem triggers and auto immune response which is targeting my tendons, muscles, nerves, and skin. I am no doctor but after being a participant in this event several times a day for over a decade, I'd have to be an id**t not to draw this conclusion. Maybe it's something like LEAKY GUT syndrome which has gone on far too long. Doctors say there is no such thing! Yes, I know....
Could you give me more information on how to possibly get linked up with a research hospital, possibly the one you went to? I will pursue it. I pursue every lead these days since my quality of life has gone seriously down the tubes, I'm spending a small fortune on whole foods, I am spending another small fortune on supplements, and life is passing me by. Thanks again. I do so appreciate it. PS: Just an update about the Medical Geneticist. i did contact one but after speaking with her and looking into it, I realized there are hundreds of possible tests and it would take a long time to do multiple tests and it is cost prohibitive. I would first want to be tested for the HLB=27 Gene (Hope I got that right), the gene that determines Ankylosing Spondylitis which also has an overlap to a starch intolerance. I have no MEDICAL INSURANCE. I found it cheaper NOT TO HAVE IT. I could not afford it either way. It's not that I'm destitute, it's that insurance is expensive, coinsurances and deductibles are too high, and premiums are just barely affordable without all the out of pocket. Right now, I am getting hormone and food allergy and intolerance testing done. That alone is $300! I pray a lot.
It's been a short month, still grateful for this very 1st post that I read. It was my "Google" for the day and boy, was I ever shocked. I'm a lot better now and while i don't have time to get into everything I am doing, I am staying proactive about this junk. I will outline what has been working for me keeping in mind this is in our genes, hard to change the genes but there ARE triggers, you will have to find your own. BTW, how I know for sure I have this: I went blind several times over the last few years, thought it was migraines, turns out this is, yet again, another symptom of this most delicious die-ease. I bless it instead of curse it and see if I can change my mind-set. Some of what I am doing:
NOTHING out of a can, jar or bag that I don't make myself. No corn, soy, gluten, eggs, sugar, caffeine, salt, if I chose to eat legumes or rice I soak it till it sprouts, I soak all nuts if I eat them, I am so strict with my diet, it's helping A LOT! 50% raw at every meal, I still eat sardines and salmon, some chix, a little pork & beef in broth form. I sip beef or chix broth all day long, it heals the gut. I pressure cook those bones to get every last bit of goodness out of them (GAPS diet).
I sip water with Chickweed, Swedish bitters and apple cider vinegar all day long. I drink wicked teas of all sorts but detox is my personal favorite. This is suppose to shrink the fatty tumors(Chickweed), you can find it on the Livestrong website. It is the oldest Ayurvedic method known to man. No matter what, something is happening.
I grow my own greens in hanging baskets all over my yard, no bending over.
I slather Epsom salt all over my body and sit in a steam room for 10-20 minutes at least 3x's a week. You can make a slurry of this beautiful salt and dump it all over yourself in the shower, while sitting on a chair/stool. You will love it. Don't forget to get a little in your mouth, it's so good for your system. Get a 5 gallon bucket and plunk your feet in it and dribble the water over your legs, dip your hands and arms in, you will thank me for this tip! Put rice in a sock sprayed with eucalyptus and menthol, heat in microwave fro 2 minutes and wrap your neck, your leg, your arm, where ever it hurts. Do it after you use the salt and watch the miracle begin!
I love Tylenol "Precise" cream with 30% Methyl Salicylate, I could not function w/o it. I especially like it up my neck before bed and on my left lump, on my hip. They seem to shrink. I also use hemorrhoid cream on my lumps.....
You HAVE to keep moving, even if it hurts, even if you can't get out of bed, get a 1lb weight and lift it. No excuse.
Make sure you are warm! If I let myself get cold, I hurt like hell.
I use all kinds of props like pillows to get comfortable in the car and at home. I found a large, hospital grade air pad on amazon for $80. BUY it if you have problems sitting! They can cost $300. If you need to take a plane trip this is what you want.
I have several more things I want to tell you but i have to get up now. Its hard to sit for longer than 20-40 minutes, I have changed every chair in my house that was bothering me. Don't continue to do the same thing and expect different results!?
Love to each and everyone dealing this most blessed condition!
Alice in Wonderland
If I don't eat for the next 3 days I know I will begin to feel better. FOR me, it all revolves around digestion. Sounds like it does for you too. If I find the magic formula (ha ha ha) or some kind of insight as to what is going wrong, I shall pass it along to you with the speed of light. Thank you, my friend, for taking the time to write. I'm not giving up. Don't you. Two heads are always better than one.
Kym