Adiposis Dolorosa aka Dercums Disease

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damouthy1
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Date Joined Sep 2009
Total Posts : 663
   Posted 7/6/2010 7:38 AM (GMT -7)   
Has anyone ever heard of this? I have been having all kinds of strange and painful things happening to me lately, the main thing is I am getting all these horrible lumps everywhere. The actual lumps are tender if pushed on but not exactly painful. But the pain they are causing in the surrounding areas (tissue, muscle, fat, whatever) is horrible.
 
I found this disease searching the net for the last week, and on one support group they had photo's of someone's feet with this disease and my feet look exactly the same. In fact my youngest asked why I put a picture of my feet on the computer! I have all the symptoms of this rare disease so I am almost positive I have it. They also said in many articles that a high percentage of people with this eventually get fibro.
 
If anyone watches Mystery Diagnosis they aired a story on this disease on the 21st of last month, the guy's name was Jake. I didn't get to see it, but I really wish I had. I see my doctor today at 3:00 so I am going to bring this info with me and see what she thinks. I was just curious if any of you had ever heard of it. Hope you all are doing well, take care.
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 7/6/2010 8:38 AM (GMT -7)   
Hi Shannon,

I have never heard of the disease before, but it sounds like you've done a fair amount of looking into it. I'm glad you're seeing your doctor today, and I really hope she takes a serious look at the info, as a possible explanation for what you're going thru.

I haven't looked it up yet....is there a "cure" for this, or a treatment that works? I hope that if indeed you get a diagnosis, it's something that is quite manageable for the future.

Good luck today, and keep us posted!

hugs,
Pam
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoroacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 7/6/2010 9:16 AM (GMT -7)   
 
 
  Dear Shannon,
 
     Good morning *hugg* It is always good to hear from you. How are your pain levels today? I hope they arnt too high. You have alot of running around to do today.
 
     I spent the last hour learning alot about Dercum's disease and I must say what I have learned so far is frustraiting. It adds alot of excess weight, very quickly from the tumors. Also, it was mentioned that having the tumors around the heart and lungs can be fatal. Apparently it effects far more women than men.
 
    There seems to be a general "theroy" that it is in auto-immune disease due to presentation. There were many mentions that perhaps it could be genetic factor involved. But that the funding to research the theroies further is severly lacking. Do you have other family members with similar problems?
 
    The lac of treatments was what upset me the most. There was speculation that in the case of the fatty deposits around joint areas, that liposuction could provide short term relief, but that the tumrs will show up again. Also mention of methotrexate, IV ladiocane, mexilentine, fentaynl and lyrica. But the article admits that even using the mentioned medications the patients are still in extreme pain. No very promising atall I am afraid.
 
    I hope your appointment with the rheumatologist goes well today. I know he will have all sorts of tests and scanns he will want done. My only for you is that he is able to get right down to the root of the problems quickly. Please, keep us update and let us know how your appointment goes. You are in our prayers!
 
*hugg*
  dani
 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
 
Chronic Pain Moderator


damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 7/6/2010 9:40 AM (GMT -7)   
I had never heard of this disease either. I found it by researching lipomas. One of my biggest issues is the weight I have put on over the last 6 months or so (60lbs!) and did not increase my eating habits or change them at all and have actually started walking everyday and still putting the weight on! I have severe headaches, lumps everywhere (the ones on my legs are more noticable I think because my calves are still kind of skinny) I have them on my arms, legs, feet and stomach. My pain is everywhere now. I was thinking muscle pain, but after reading about dercum's it could very well be in my fatty tissue. So I guess the more fatty tissue I get, the more I hurt?

My sister (Antbuggey) is also getting a couple of the lumps on her shin and has some on her feet. Also my 16yr old daughter noticed a couple starting on her feet! This disease sounds like it is very slow starting and that you can have it for years and years before it gets bad. And yes, in everything I have read there is no cure. You just pretty much try to lessen the pain and keep on eye on internal organs to see what is growing on them.

Dani, I knew you would look it up...you are awesome and I thank you for trying to get me some answers! I really hope I don't have this horrible thing, but I have so many symptoms and I almost cried reading some of the stories written by people with this disease. I could of wrote most of them! So, needless to say I am a little scared but I need to know what is going on with me.

I will keep you posted. We will see what my doc thinks today.
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


ldg
New Member


Date Joined Jul 2010
Total Posts : 1
   Posted 7/6/2010 11:01 AM (GMT -7)   
Here are some links you might find helpful

http://dercumslinks.blogspot.com/


Fellow Durcums Sufferer

LGD

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 7/7/2010 5:08 AM (GMT -7)   
Hey LGD, thanks for the link. Well I went to my doctor appt. yesterday, was still in severe pain and very lumpy, bumpy and swollen (my new nickname lol). I brought up Dercum's disease and was not surprized to hear that my doc had not heard of it. She is going to research it but also want's to send me to a rheumy. My blood tests for RA and Lupus werent back yet. She was also concerned that I have more rashes on my body and the ones I already had were worse. So, more blood work. She checked my SED rate again and some other things. I should get at least the SED rate test results today to see if it is still high (it was 42 last week).

For the increase in pain she gave me fentanyl patches, just the 25mcg to try to see if maybe we should switch me to those from the oxycontin as I am having more and more break thru pain. I am kind of scared of these patches, but I guess we shall see. I just hope I can get some answers soon, I really hate this!

I hope everyone has a wonderful and LPD...Take care.
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


LupusLady
New Member


Date Joined Jul 2010
Total Posts : 3
   Posted 7/14/2010 7:19 PM (GMT -7)   
OMG I only have met three other people with this disease. I was finally told I have DERCUM's DiSEASE about 8 years ago. I have Lupus which was drug induced. But after I had spinal surgery (laminectomy) I started having lumps under my skin along the muscles in my arms and legs.The pain is so incredible that you think you are going to die. The lumps are just painful spontaneously. It is especially bad in cold weather and rain. I finally went to New York to see what was going on and they did the diagnosis there. Supposedly it is a dermatological disease but most dermatologists have no idea what you are talking about. There was talk about lidocaine helping but it was discovered to be temporary and not very effective. However, I have discovered al ot of info about it as it relates to the brain not being able to tell the body to break down the fat and then it forms in these lumps under the skin. Dr. Dercum in the 1800's (Pennsy) is the one who discovered it. I was told there were only 200 known cases in the US. It is in the Rare Disease center in Washington DC. It is prevalent in the Swedish community (although I am not). God I wish there was an answer but with so few having it no one is interested.

art3moe
New Member


Date Joined Jan 2011
Total Posts : 2
   Posted 1/14/2011 9:11 AM (GMT -7)   
Adiposis Dolorosa is what I have been diagnosed with.  Also called Dercum's Disease.  It's extremely rare I guess.  If anyone has this also I would love to connect with you.  I can't find much on the web about this and my Dr. didn't say anything more to me as to what to do next.  It's extremely painful.  thank you. 

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14414
   Posted 1/14/2011 4:37 PM (GMT -7)   
http://dercums_data.tripod.com/index.html
I saw a website about this support group and information on it.
Terrible sounding disease...
Joy

MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 1/14/2011 5:16 PM (GMT -7)   
   Dear Shannon , Oh I'm so sorry Sweetheart that your having such a rough time of it right now . I've never heard of that illness either , but give your doctor a chance to check into it and try to stay positive . You sound good , but you usually do . I hope you'll talk about anything you need to Shannon , it would be natural to be apprehensive about this . Just know your family is here for you always and that your never alone, you are a great person and friend and we're here for you all the way my good buddy .I'm thinking of you !!! Mikel

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 1/15/2011 8:25 AM (GMT -7)   
Hi all, I want to thank everyone for their concern. This was an older post but I still don't have a diagnosis. Most of my symptoms now are leaning towards lymphoma, but alot of things still show possible dercums. This is a hard disease to be diagnosed with because it is so rare.

I have an ultrasound of my neck scheduled for this Tuesday to see what is going on with my lymphnodes. My whole neck and face is swollen and I have several swollen lymphnodes. I also have superior vena cava syndrome and a whole lotta pain.

I will keep everyone posted on my situation, and my heart goes out to those of you with dercums. It is a very strange and very painful disease. Take care.
Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Percocet, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 1/15/2011 9:38 AM (GMT -7)   

 

    Hello Shannon! I certianlly wanted to wish you well on your appointment this next Tue. I'm still learning what is going on with all the members, and tend to forget easily. My memory seems to be on the short side these days.

        Take care to the both of you and your sister!

  SE wink


gonuts
Regular Member


Date Joined Jan 2008
Total Posts : 159
   Posted 1/15/2011 10:19 AM (GMT -7)   
confused Shannon, God bless you and your family. I did see the show. But with my dang memory issues, I can't remember all they said.
I just want to say I will say many prayers for you, and sending you healing (((hugs))) and warmth to soothe your tired and pain filled body!! I hope they find some way of stopping them from forming. I'll be thinking of you!!! Laura <3
Cervical spine surgery 2004, C-section 1986, Cholecystectomy 1999, Thoracic and Lumbar injury 2000.Anxiety/depression 2008. Fibromyalgia 2009,Thyroidectomy 2008. Degenerative disc disease. IBS,Asthma,Rheumitoid Arthritis, Sacroillitis, Scolylosis, disc bulge in L5/S1.possible Lupus and/or ankylosing spondylitis.Meds: Lisinophil, xoponex, symbocort, pulmocort, troponal, lyrica,cymbalta,trazadone

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 1/16/2011 5:54 PM (GMT -7)   
Shannon,
well wishes being sent to you, bless your soul, and all the others who have this
and may a cure or help be forthcoming in this...with all the advances in medical
science you'd think they could try to work on this disease to find answers for it...
Shannon healing hugz and prayers for you and your family...
((((((((((((((((((((((((((((((((Shannon))))))))))))))))))))))))))))))))))))
please posts more often, sure do miss you...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

Cobra38
New Member


Date Joined Jan 2011
Total Posts : 2
   Posted 1/20/2011 9:05 AM (GMT -7)   
Art3moe, I have Dercums Disease. I remember the first tumor, and how the disease progressed. I can't remember the names of all of the doctors I was referred to and all of the tests they did I got the usual wrong diagnosis including MS. I was sent out more than once with a prescription for an antidepressant and it was even suggested that I seek a counselor.
This is an autoimmune disease that is inherited from the maternal side of the family. The tumors vary in size some are very hard, some soft, some are very painful to touch. It begin with the first tumor, it was a few years later before the muscle pain and the fever started. I was very active walking 2 to 5 miles daily, hiking, dancing, gymnastics etc full of energy. I went from that life to walking down the drive way for mail caused pain in my thighs. The temperature started in the fall and everyday it would be from 99 to 100.6. The weight gain was 45 pounds in 4 months all in my upper arms and stomach. That ruins a 24 inch waist line. I became unable to tolerate heat. Many days are like the flu body aches, temperature, hardly able to move. Since these tumors attach to nerves the pain is bad, you will have wasting away of muscle and some atrophy and areas that are numb. This disease also causes insulin resistance. I am also an insulin dependent diabetic taking 5 shots a day. During my many drs and testing I was tested for carpal tunnel and didn't have it. With no change in jobs or anything else that would have caused it, it suddenly is was extremely severe and surgery was required on both wrists. These tumors if removed will just return. Every few days I find a new one. From MRIs I know I have some that is not visible or I can't feel them by touch. Simple housework can cause horrible pain for days. Walking any distance, using your arms such as painting, raking can cause pain for days. Activity causes inflammation which causes even more pain with the already painful tumors. I have been watching Mystery Diagnosis and can relate. I was going through the same thing from starting in 1990 through 2002. I was very angry during that time and 10 different doctors I was treated like a person that went to the doctor if I felt a twinge and was unable to handle pain or that I wanted attention, maybe I was trying to get narcotics for pain or that I was mentally disturbed. I was even told of course if you walk and you are out of shape you will be sore. The rapid weight gain was because I had to be living on fatty foods, and basically my only activity was feeding myself. I have never ate fried foods, or junk foods, I had a very healthy diet, and was very active. It is true this disease is so rare that very few doctors have heard of it, and certainly have not seen it.
I knew my mother had experienced some of the symptoms but died before it had progressed. I knew that a great aunt had been diagnosed with a rare disease, but she also was deceased. I had to track down distant relatives as a desperate attempt to find out the name of the rare disease. Unless you have this it is impossible to understand the pain that it causes. There is no cure, no medication or treatment to slow or stop progression. Pain medication offers little comfort if you want to take something that you can still function with. No activity at all with no emotional stress, offers the most comfortable days for me. Don't move the furniture to clean, avoid the areas in my house that has stairs, give up shopping, gardening, fishing, walking the dogs. Sit on the couch with you feet elevated, and learn to like TV. reading is a problem because holding a book or magazine up and turning pages causes pain. I gave up painting wall murals, and other painting, woodworking, and other hobbies that I love because of the pain. I just fail to understand why doctors do not know about a disease that is this awful. I do not know anyone that has this. My very understand doctor who watches Mystery Diagnosis has seen his only case of Dercums Disease that was featured on the show. Are you or anyone else being treated by a doctor that has any experience with this disease? I really don't know how the replies, posts etc works. Art3moe you are not alone. I have wondered how many people have this, and why it has not received any public attention.
This seems to be a very painful destructive disease that is kept so secret that the doctors don't even know about it. It is only fatal even the tumors form in the heart, which is possible, but usually they stay in the arms and upper body and legs. A miracle would be good lets all say a special prayer.

art3moe
New Member


Date Joined Jan 2011
Total Posts : 2
   Posted 1/20/2011 9:52 AM (GMT -7)   
Cobra thank you for your sincere reply.  I'm so sorry to hear your story.  It sounds like mine in a way.  I have seen so many doctors in the past two yrs that I can't count them.  Two weeks ago one Dr. came in the room and basically said "I can't help you".  She seemed very angry with me and I called her on it.  She denied it and she was ready to "brush me off" until she examined me.  Then she totally changed her attitude and became a  dr. again.   Although she doesn't have any idea what is wrong with me at least she admitted it.   I saw a Rheumatologist last week and she told me about Dercum's.  All she said is that it is NOT autoimmune and you can get these lumps anywhere there is fat.  That's all she said.  No recommendations for any treatment or otherwise.  I'm lost....I find more and more of these lumps all the time.  Some are the size of rice grains and others are large and oblong almost rope-like.  when they come up they are very painful and then after time it subsides.  Some are painful all the time.  I have them in my abdomen now just recently and they bruise and they feel like marbles.  I have dozens of them.   My buttocks hurt so bad for over a yr and I finally went to a physical therapist and they have never in 17 yrs seen anything like what I have.  They were clueless.   Everyone tells me this is Fibromyalgia but I know better.  I could write more but this is so overwhelming I just can't.  I don't know where to turn next.  I also have Reactive Hypoglycemia and Insulin resistance, Malabsorption also.  Has anyone been in contact with Dr. Herbst?  Would that be an option?   Thanks for listening.   

crankypoet
New Member


Date Joined Dec 2007
Total Posts : 8
   Posted 1/20/2011 11:41 PM (GMT -7)   
Hello--

Although I have had chronic pain for 15yrs & have read this wonderful forum for several months, I have never posted on this particular board. My name is Stacy, two car accidents, three back surgeries & a balky thyroid that causes carpal & tarsal tunnel syndrome flares. I want to reply to this particular thread because I do know that Louise Reed, the wife of writer and radical politico John Reed (remember Warren Beatty's movie "Reds?") suffered from this condition. However, her coping skills aren't to be recommended (poor dear drank -- all that was available at the time, I suppose). I also want to suggest to those with the syndrome that perhaps reading might be possible by two means. First, I have seen cookbook supports that hold a book upright so one may read it without holding it & it also ensures that the pages are easily turned. Next is the newfangled Kindle. There are many classic books in the public domain available upon it for free & while the initial price is an investment (small, medium or large depending on your income -- Mom & Dad Christmas'd me with mine -- very lucky!) and is easy to operate with minimal strain upon the hands (you can prop it up on a pillow or lay it flat). I will compose a proper introduction later. This is an amazing board that features people in such trying circumstances and happily, their most loving and intelligent features always shine through.

Cobra38
New Member


Date Joined Jan 2011
Total Posts : 2
   Posted 1/20/2011 11:43 PM (GMT -7)   
I refuse to believe that somewhere in the world that some doctor has some experience in treating this There is not anyone in my area. The doctor that treats my diabetes knows how bad it is but really doesn't know what to do with it. He prescribed Cymbalta because it has been effective with nerve pain and other chronic pain.
My arms and legs looks like a mutation from a low budget horror film.
Anyone off of the street unless they were blind would know that something is really very wrong. How can any doctor see this and do nothing?
Maybe they should visit a few web sites. Stay in touch.

granatedigrasso
New Member


Date Joined Jan 2011
Total Posts : 1
   Posted 1/31/2011 5:52 PM (GMT -7)   
@ cobra & art3moe,
I am to suffering by grenades of fat (hence my user name) that are debilitating ! HELP ! I have gained almost 80lbs in 2 1/2 years..dieted with lil success so went back to eating normally. I am constantly tired with numerous new lumps & bumps, that 1/2 of are excruciating and bruise easily. I have so many in my hips, bottocks and now new ones appearing frequentlu up and won my arms. Sometimes it hurts to take a shower and Im out of breath frequently. It's so ridiculoua and I have no way of explaining it to someone who has never felt this, and I also feel like a hypochondriac.. Most frusturating is that when i go to the dr. they don;t want to hear about it and say that my other problems are more concerning!! I have had the same dr. run arounds from them blaming my symptoms on my hep c to my goiter to esptein bar virus to low white blood cells, got tested for SLE (systematic lupus) and that came back negative and all they found was some weird leiden V FACTOR that means Im susceptible to clotting. I looked up painful lipomas and caame across Dercums, & LOW AND BEHOLD I fit every symptom!! Help I need a dr. in my area who will see me and diagnose me. I am in southern ca, waiting painfully.

tlt
New Member


Date Joined Feb 2011
Total Posts : 1
   Posted 2/24/2011 10:38 PM (GMT -7)   
Hi,  I am in the process of getting my diagnosis.  I found out about Dercum's Disease by accident, or should I say it was devine intervention! I was trying to find out about painful sausage shaped bands that are right under the skin circling my hips.  After a few google, yahoo, and ask attempts Dercums popped several times and when I read about it not just a light bulb it was a flood light that came on.  Oh my Goodness!!  I could not believe it, I may hae finally found it.....Ta Dah!!  The kicker was something I had never mentioned to anyone.  I seem to notice the bands and other pains along with weight gain get much worse around 2 weeks prior to my cycle.  I thought I was experiencing menapause and going crazy and being a whinner.  I am obese have been all my life so the lumps are not as noticable as other sufferers.  Yet, most of the doctors I have seen over the past ten years due to the pinching and pulling pain in my abdomen seem to always come to the same conclusion..... your fat!  What do you expect.  I do have a doctor that listens to me and will follow up with any problem.  After explaining to her that I know I am crazy would she please pacify me and look over the info I had about Dercum's Disease.  She did and confessed I was over her head with this, and she would research it.  She does agree it is very possible that I have this.  She is the best.  She has started the process with referrals to rhuematologist, cardiologist, endocrinologist, and any other ologist that might be helpful.  I guess I  have rattled on long enough.  I am grateful there is a place like this to rattle on about this disease. It's not like everybody know what your talking about when you say, Oh man, my Dercum's is flaring bad today.  Peace to all.......... 

grandmacathy
New Member


Date Joined Mar 2011
Total Posts : 3
   Posted 3/18/2011 3:13 PM (GMT -7)   
I am at the Mayo clinic this week and received both the diagnosis of fibromyalgia and Dercum's disease with probably Chronic Fatigue Syndrome too. I have to have more tests before that one is confirmed though. The only lumps that I am currently aware of are in my abdomen and on my rib cage and they are extremely painful. They have been there for months now, but my doctor's just kind of blew me off once they knew I was coming to Mayo. They gave me a couple of injections yesterday to try to help with the pain and inflammation, which seems to be helping some. They also prescribed pain patches so hopefully that will also work. My biggest problem so far with the Dercum's, which I understand fibro patients deal with too, is the extreme pain that my bra is causing. By the end of the day, I feel like it is squeezing me to death. I had to go up two sizes and get an extender. I know to some this probably sounds ridiculous, but it is so miserable. This diagnosis came as a surprise to me. The more I read, the more scared I become. I have a 13 year old with Aspergers who needs his mom and an 18 year old with chronic pain of her own. I will do my best to try to manage all of this, but with the extreme fatigue and the pain, I know it won't come easy.

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 3/19/2011 8:10 AM (GMT -7)   
Hi Grandmacathy, welcome to Healing Well. I am so sorry to hear that you are going through so much right now. I am the one who started this thread, but have not been diagnosed with Dercum's. The rheumy I saw does not think it is, but could not rule it out either as of yet.

I have read alot on this disease and know it is very painful, I really feel for you. I hope that you get some relief with the patches. Managing the pain can be a huge step in getting your life back (well somewhat).

You have alot on your plate and I do hope you can get some relief. If you get a chance try and google the Dercum's mystery diagnosis episode. It was very informative. Good luck and once again welcome to the family. I hope you keep coming back! Take care.
Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Percocet, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

grandmacathy
New Member


Date Joined Mar 2011
Total Posts : 3
   Posted 3/20/2011 6:52 PM (GMT -7)   
Thank you so much Shannon. I love the gentle hugs since we know that's all many of us can stand these days. I did discover that I was wrong about the lumps. My thighs are filled with little tiny ones that are painful to the touch, just not as painful as my chest/abdomen. There are a few in other places too, just not as many. I am doing better emotionally then I was. I know it's not going to be easy, but I will do everything I can to get control of this and not let it get control of me. I know that my life has to change. It will never be what it was before this horrific pain started, but neither can I let it continue to keep me down as much as it currently does.

For the next 5 weeks, I have to come off of all of my medications. I will be allowed to use the patches however, which I guess are not really pain patches, but more numbing, but hopefully, they will provide me with some relief. I was told that it is vitally important during that time for me to get massage therapy and find a therapy pool. They will be important afterwards as well, but not to the extent that they are currently.

I will attempt to watch that episode. I tend to fall asleep watching anything.

Thank you!
Cathy

grandmacathy
New Member


Date Joined Mar 2011
Total Posts : 3
   Posted 3/21/2011 3:27 PM (GMT -7)   
I saw my family doctor today. He simply laughed at the diagnosis and said that now he would have to diagnosis all of his patients who have painful limpomas with Dercum's. I guess we will be looking for a new doctor soon since I'm not sure what else what we can do. I will need a doctor near home who will be supportive and try to help me find some treatments that will help. Apparently mine will not be one of those.

Sam32
New Member


Date Joined Mar 2011
Total Posts : 2
   Posted 3/22/2011 7:00 AM (GMT -7)   
Hi All

My husband was diagnosed with Adiposis Dolorosa or Dercum's and he has had many surgery's to rid him of some of the most painful lumps he has. He usually gets a few taken out once a year he has many lumps on his arms and chest area. He drops things constantly because of the ones on his arms. We are still looking for a specialist to help us deal with this disease, none of the Dr.s around our area know much about it. If anyone knows of any type of herbal or medication to help we would be willing to try it. Or if you have any questions on dercum's you can ask maybe we can help.
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