Mood:
accident proneAfter thinking about it for months, dwelling on it and procrastination in general I finally sat down to write my blog. As the title probably emphasizes, this weblog is a chronicle of my declining health. I wanted to log the events leading up to my illnesses, the long diagnostic process and the end result of living in pain 24 hours a day.
This is me, or at least it was me about seven years ago. I thought it might be appropriate to begin by showing you what I used to be before I show you what I've become. I was about 33 when this picture was taken and already having some health issues. I had begun having sudden, shock-like pains on the right side of my face and in my right shoulder at the same time. It felt like getting hit with a sudden bolt of lightening and was excruciatingly painful. I'd had this happen earlier in my life, once when I was 13 and again in my early 20's. It came on suddenly, lasted for less than a minute each time and then disappeared. When it started happening in my 30's, however, it was far worse. I reached a point where I was having several attacks of facial pain each day with each attack lasting anywhere from 30 seconds to 3 minutes. My primary care doctor recommended that I see a neurologist and after waiting for authorization from my HMO I did. This was the beginning of a very long journey of declining health.
After a very thorough examination by my new neurologist I was sent for an MRI of my brain. My new doctor wanted to rule out any tumors or irregularities of the blood vessels in my brain. When that came back normal the doc informed me that I had trigeminal neuralgia, which has been referred to in medical literature as "the most painful condition known to man". Well, that wasn't very reassurring. The condition is pretty much what I explained above....sudden, shock-like or stabbing pains in the face. The pain can be so intense that it stops you dead in your tracks until it passes. He put me on some anti-seizure medication to help with the symptoms, but there is no cure. Not long after that I began having more neurological symptoms, all of which pointed to the possibility that I was developing multiple sclerosis. I began having more tests to try to either verify or disprove the existence of MS, but the results were inconclusive for many years. I had a spinal tap that did point toward MS but no conclusive MRI's. I am currently listed as "suspect for MS".
After I had been seeing my neurologist for a little over a year I began having intense pain throughout my joints. This was a completely new thing for me and my neurologist thought I may have developed fibromyalgia. Fibromyalgia is a painful condition of the muscles that can cause widespread pain and fatigue. This certainly described what I was feeling, but there also seemed to be a lot of pain in the joints themselves. My doc ordered a complete bone scan which showed widespread inflammation in my joints. This led him to refer me to a rheumatologist and an ultimate diagnosis of rheumatoid arthritis AND fibromyalgia. The sad part here is, that isn't the end of my diagnoses.
During the course of my treatment for the above mentioned conditions I began having an onslaught of other symptoms that ultimately led to more diagnoses. The additional problems I picked up were: sleep apnea, gastroesophageal reflux disease, chronic obstructive pulmonary disease, hypertension and metabolic syndrome(pre-diabetes). I was a very difficult patient to treat for a couple of reasons. First of all, I could not take the traditional treatments for multiple sclerosis because the disease could not be confirmed satisfactorily enough for my insurance to pay for the treatment. Second, I could not take the newest medications to treat the rheumatoid arthritis because the side effects of those medications were greatly intensified if you also have MS. Talk about being between a rock and a hard place. All my doctors could do were treat the symptoms the best they could, which wasn't very good. I was always in pain and nothing seemed to help.
As a result of being in pain all the time, lack of sleep due to pain, extreme fatigue and sleepiness due to medication I became disabled in 2002. My ability to work had declined tremendously already because of my health, but it was official when Social Security finally agreed that I could no longer function in a working capacity. All my doctors agreed that the only form of exercise I could do was swimming, but even that was complicated. You see, people with MS are very sensitive to heat. It makes them feel completely exhausted and ill, so for the sake of the MS it was recommended that I swim in a cool pool. The only problem with that was, arthritis symptoms tend to flare up and feel ten times worse in the cold. Thus, it was the recommendation of my rheumatologist that I swim in a heated pool. Does this seem like insanity to anyone else but me yet? Naturally, you can imagine what this lack of exercise started doing to my weight. I'm not going to pretend that I didn't have weight to lose before I got this sick, but you can judge from the picture above and the one to follow that my weight greatly increased during this time.
This brings me to relatively current events. A few months ago I began noticing what felt like lumps in my abdomen and back. I'd feel them when I was showering and they were very painful. Then I remembered feeling similar lumps on the sides of my thighs that felt like severe bruises in the past. I had even mentioned them to one of my doctors but they didn't think it was anything to worry about. After feeling the lumps in my stomach and back I felt for the ones on my thighs again and they were still there, and still painful. I made an appointment with my new, wonderful primary care doctor and she did a detailed examination. She began palpating (feeling around and pressing) my stomach, sides, back, legs, arms, etc. and was counting as she went. She finally stopped counting and told me that I had literally hundreds of benign tumors called lipomas all over my body. In general lipomas are benign fatty tumors that cause no pain. Of course, I can't do anything the easy way so I had a whole different kind of lipoma. It turns out that I have a very rare disease called lipomatosus dolorosa, or Dercum's Disease. With this lovely condition a patient has multiple (usually hundreds) of fatty tumors that are on or around the nerves. This causes a tremendous amount of pain and disability. There is a long list of symptoms that go along with Dercum's disease and I can honestly say that I have every single symptom on it, which would explain a lot about my health decline over the years. The tumors in Dercum's can be removed, but always grow back and usually within days or weeks. People who have this rare condition are prone to gaining weight and not being able to lose it and there is no treatment for it. As a matter of fact, the condition is so rare that most doctors have never heard of it and currently no research is being done to find a cure. Patient's basically live in pain all the time with no hope for any improvement. It changes your appearance as well, taking you from an otherwise healthy-appearing person to an individual who looks extremely ill and obese. Here is what I look like now:
At this point I live my life every day struggling to cope with the pain. I am the mother of two great kids who are still in school, so I can't afford to be in a drug-induced haze all day and not being able to drive. I need to be available to them as a mom. I am pretty depressed most of the time because of my health but I put on a happy face to those I love because I don't want them to know how much pain I'm in. Every day is the same, and every day is pretty unpleasant.
Well, I suppose that's enough for an initial entry. The saga continues later.
Monday, 30 January 2006 - 11:01 PM EST
Name: suehow sorry I feel for you - I can! empathise, been through all the medical guess work etc myself...was also led to a rheumatologist after being told a blood test showed that I had some autoimmune disease, possibly ms (i freaked out)! It was worth paying the huge fee....I too am a complex case, as I have osteoarthritis with lupus, all my joints including my back are affected, the lupus is slowly eating away at me, I have eye problems, skin problems (my skin is like tissue paper), I work very hard at staying positive, I have a wonderful husband, work from home (if I didn't I would be on an invalids benefit etc). Keep on goin' girl you'll have good days and bad - your children look wonderful
Saturday, 17 June 2006 - 1:10 AM EDT
Name: Tony McMillanHome Page: http://www.acmrr.org
I'm sad to say, I know how you feel. In two and a half years I've gone from running a hospital construction company to being in bed most of the time. I have had over 400 lipomas pop-up in just two and a half years, and like most others, I am dealing with numerous other health issues that the doctors think are related.
The best thing that happened in my case was running into a doctor early in my plight that has diagnosed only 4 other cases, and he is a leading expert. I, unlike most sufferers of this horrible disease, am a male. My weight gain has only been around 30 pounds, but I have problems eating, so I probably should have gained 100 pounds with over 400 lipomas.
I have been diagnosed with Parkinsons, and a couple degenerative joint and bone diseases. They have removed a number of the lipomas, but they grow back quickly and cause more pain because of the scar tissue.
I am currently on opiate therapy but am sick all the time due to the meds.
Hang in there. I hope they find something to help you,
Tony
PS. I will be starting a forum for dercums in the next couple months since the others seem to be inactive or not specifically for dercums.
Thursday, 5 October 2006 - 11:42 AM EDT
Name: "Debby"
Hi.... I know what you are going thru. I have this awful condition myself and just had my first lipoma removed a week ago today and it was really big. I still have hundreds more all over my body. I have had weight gain that came on suddenly and I try to just deal with it all as I know so far there is no cure.
I'm trying to get it known out there so maybe if we educate people and the doctors about this we might just get a cure or treatment for this.
Take care,
Debby
Monday, 19 February 2007 - 8:25 PM EST
Name: "Kristi"I am deeply sorry for your pain and suffering. I am wondering if I have Dercum's. If you would like to chat, please e-mail me. I will be thinking of and praying for you. Kristi
Monday, 19 February 2007 - 8:27 PM EST
Name: "Kristi"Sorry, I didn't have my e-mail address correct before. Thanks, Kristi
Tuesday, 6 March 2007 - 12:43 PM EST
Name: "John Cook"
Hello,
I too have constant nerve pain similar to yours. i have lost much of the use of my legs and gained almost 150 pounds. I also describe lightening bolts with terrible duration. They have knocked me to the ground in the worst places--like in the middle of a grocery store. No one does anything, and little empathy too. I now avoid the common, unintelligent masses.
I am afraid of the ocean--scary stuff below cloudy waters, so I got a sailboat to assist in adrenalin release and I scared myself by sailing. It was the best therapy ever. I did that for 15 years, or until I could no longer walk enough to get on the boat or stand on deck. I can't kneel, squat, or bend over too far.
So, now completely understanding the value of adrenalin, I bought a small ultralight airplane because I have a fear of heights.
Unfortunately, I read and believed their ads, and it is such that I can't use it. My last $20,000 went into something I can't use. Now I face the real possibility of suicide. My sailing adrenalin lasted so well that I managed to survive this for 15 years. I wanted more from the airplane. But the company (Rans Aircraft) that screwed me by a false ad that I counted on, is unwilling to do a thing.
Know any advocates for us pain patents? I need one badly. Feel free to write.
It is different for everyone and the adrenal glands excrete varying amounts depending on your make up, but mine did a good job and kept me reasonably safe from suicide for a long time. You might see if your pain submits to the release of adrenalin. Hit the roller coaster or go on a small boat ride. Find out. If you feel better when slightly scared, you too can benefit. An hour or two every three days was all I needed to reduce my difficulty by 50%-75%
John
By the way, I would also like to post my story. Where did you find your website, or did you build it?
Thursday, 7 June 2007 - 2:19 PM EDT
Name: "Lisa Moon"
Hi,
I also understand what you are going through. I have not been officially diagnosed yet. I had a lesion removed which proved to be a lipoma so I was referred to a dermatologist at St. Louis University Medical Center. She is sending me for consults to "rule out" other causes but the only thing I can find that presents with painful lipomas is Dercum's. I see a psychiatrist today because the first thing they want to rule out is hypochondria or paychosis. Why would anyone ever lie about having pain from a lipoma? I've been reading everything I can about this and am considering having my kids genetically tested if I get a definitive diagnosis. I would love to recieve e-mails from anyone else living with this illness. I have a feeling it is not as rare as they have thought and so many poor people have suffered and been patronized for complaining about their fat hurting when other people didn't believe them. Stay strong and God Bless. Lisa Moon lmoonrn1618@hotmail.com
Monday, 7 January 2008 - 1:38 AM EST
Name: "ef"
i feel for you..
maybe You should try meditation or Yoga.
http://www.wildmind.org/applied/pain
Monday, 7 January 2008 - 1:40 AM EST
Name: "ef"
maybe You too and anyone who suffers should try meditation or Yoga.
http://www.wildmind.org/applied/pain
Monday, 7 January 2008 - 7:59 PM EST
Name: "Suzi More"Home Page: http://go to CD Baby .com Suzi More, Blue CD
Dear One,
It has been over 10 years I have been told I was a hypochondriac, I could live with the tumors, I wasn't in pain, looking for drugs, for attention, etc, try exercizing, dieting, lose wait, that I was lazy, I could go on for pages.
Last month, I got my Dercum's Diagnosis. I will have several tumors removed from right abdomen next month then we will see about left.
There are nights I cannot sleep, the pain in gut is so bad, I pray that Dr. Herbst will find some cure soon.
I hope you are finding some relief with whatever your doctors presently may be suggesting.
I am on lipram. Vit D3 (4000 iu daily) and B12 and Gamma shots once a month. U also use Lidoderm patches on spots that hurt the worst.
It seems the cold brings on really bad days and then I need a pain killer like darvocet or vicodin. But I don't like to take either because I get constipated.
I am luckier than others who seem to need a great deal more than I do to relieve pain, but tomorrow is another day.
Good luck. Suzi
Friday, 11 January 2008 - 11:00 AM EST
Name: "SillyGal"Home Page: http://Dont have one
Dear John:
Read your email that you sent to Kris back in 2007 regarding Dercum's Disease. You had mention the word suidice and I said that is a word I say often. Maybe I should find out if he is around?
So are you here? In this world of pain and suffering? I am looking for a email parnter. Someone who believe's in the Almighty God real strong. Not looking to meet anyone. Just looking to talk. I am very confused and very ill and I really don't know what to do. I need to have someone that will talk back to me and ask the same. If you are the person please email. If you killed yourself I am sorry to hear that. You are a better or should I say stronger person than I. All my life off and on I wanted to but were afraid to do it. Because of my relgious beliefs and I do not want to go to hell. I see some of my relatives there. LOL.
Hope to hear from you soon.
Friday, 11 January 2008 - 11:47 AM EST
Name: "SillyGal"Home Page: http://Dont have one
Hello to Everyone:
I am sorry. I have Dercum's Disease too! I just sent John Cook an email thinking it would be sent just to him. However, it did not which it does not truly matter. He mentioned death and I felt he needed a friend so I emailed him.
However, I also need someone who is believes strongly in the Almightly God. I would of killed myself years ago if I was not a believer in GOD. So I am looking for an email friend that is lookng for someone to write 2-3 times a week. I am ill and it is hard for me to get on my laptop everyday. My husband is very hard on me if I don't do something for my keep! LOL.
As for Dercum's this Disease my hubby does not believe the disease is real or FMG disease is real or any of the pain I am having is real. He thinks I have become lazy person and want everyone especially him, serve me everything I want from the time I get up to the time I go to bed. Though he thinks all doctors are quacks. My father use to tell me that I am the one person wilth the most illnesses at one time. My husband now says the same thing now. They say when you marry your spouse you marry someone like your parents. I know for a fact I did, because each day my husband is beginning to look, talk, smell, fart, and sleep like my good old dad.
Anyone interested in emailing me and telling me a little about yourself. I would be more than happy to listen and we can go from there.
Wednesday, 4 June 2008 - 2:13 PM EDT
Name: ldyauburnfn11Home Page: http://ldyauburnfn11.tripod.com
I, too have Dercum's Disease and just found your blog. Are you a member of any of the forums? We have a DD firum just for womem at: http://health.groups.yahoo.com/group/dercumsdiseasefor_women/messages
You would need to contact the forum manager, Jackie at: rubyjax7@yahoo.com to join as it is members only, but I think you will find it a great place for info and pure friendship and understanding in this disease! It is a wonderful group of ladies and I have made great friends there! You must have a yahoo email, which is free to jpin any of the forums there. There is also what we call the big board, where you don't have to requet membership at:
http://health.groups.yahoo.com/group/Dercums_Disease
And also on Careplace at:
http://www.careplace.com/page/1585
Dr Karen Herbst is researching DD and has a website at:
http://kherbst.startlogic.com/3501.html
Hope to see you on the forum!
Judy
Wednesday, 19 November 2008 - 2:33 AM EST
Name: "Ruth"Home Page: http://www.infared-sauna-spot.info
I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.
Ruth
http://www.infrared-sauna-spot.info