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Old 03-28-2014, 12:44 PM
 
Location: Wake County, NC
1,210 posts, read 1,655,705 times
Reputation: 1873

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I am in so much pain right now. I've experienced this before, but this flare has lasted about 6 weeks already. I have painful lumps down the insides of my legs. It's not in the muscles; it appears to be in the fat layer. A biopsy several years ago said "superficial perivascular dermatitis" - which meant there wasn't anything there to treat. The skin is covered with a reddish lacy color. It's not a raised rash, nor does it itch. It does burn like a sunburn at times. The skin on the inside of my thighs and knees is tight and shiny.

I recently had hip arthroscopy (15 weeks ago), and thought maybe it was scar tissue, but it started on the opposite side as well. My rheumatologist thinks it's one of those "lesser knowns" (not lupus or RA) and is sending me to an autoimmune dermatologist for a deeper biopsy. She's only seen one other patient with it and they never figured out what it was. I asked her about Dercum's Disease (Adiposis Dolorosa) and she reacted like I had made it up! She's never heard of it! I find it hard to believe a rheumatologist at one of the major teaching hospitals in the southeast hasn't heard of it. Even my PCP mentioned it several years ago, but he didn't feel qualified to diagnose it.

It looks like a very severe case of cellulite, but it's very painful. It's a constant burning pain. Gabapentin (Neurontin) did nothing for it and caused me to gain 15 pounds in as many weeks. If anything THAT made it worse. I'm gradually coming off that and will try Amitryptiline (Elavil) next.... not that I think that will work. The oxycodone I have left over from surgery doesn't touch it.

Ortho doesn't want it since it's not related to surgery. (He thinks the traction from surgery may have triggered a connective tissue flare.) Rheumy doesn't want it since she's baffled by it. Dermatologist appointment isn't until June 6.

In the meantime, I am in constant pain. It's hard to walk when your legs hurt this badly. I have no idea what to do about it. (I've tried heat, ice and massage. Massage makes it worse.)

Has anyone else experienced anything like this? Any suggestions on getting some relief while waiting for the appointment? (I'm currently in Aqua PT for my hip surgery, but it's not making a difference in THIS. Hard to rehab the hip when this is in the way, and I can't have the other hip done until this calms down.) I just feel like
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Old 04-26-2014, 03:08 PM
 
Location: Waterville
332 posts, read 467,940 times
Reputation: 775
You might have lipedema, a disorder of adipose tissue. Few in the medical field are familiar with it. It affects women almost exclusively and is sometimes present with another condition called lymphedema, which is a very common and incurable condition. On lipedema sites, I have seen reference to Dercum's, but I haven't paid attention to that information.
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Old 04-26-2014, 05:06 PM
 
2,996 posts, read 5,190,807 times
Reputation: 3078
Quote:
Originally Posted by foglover View Post
You might have lipedema, a disorder of adipose tissue. Few in the medical field are familiar with it. It affects women almost exclusively and is sometimes present with another condition called lymphedema, which is a very common and incurable condition. On lipedema sites, I have seen reference to Dercum's, but I haven't paid attention to that information.

Lymphedema is treatable. Hubby has it & uses a medical device each day to keep it under control.

OP might consider seeing a podiatrist, which is the type of doc that dx hubby a few decades ago.
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Old 04-27-2014, 05:11 AM
 
Location: Waterville
332 posts, read 467,940 times
Reputation: 775
Lymphedema is treatable, not curable. And for some the regimen of manual lymph drainage, bandaging and compression garments is an unreasonable expenditure of time and money. The various machines are expensive and not always covered by health insurance. Don't get me going. I think the options for lymphedema and lipedema sufferers are an outrage.
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Old 04-27-2014, 06:06 PM
 
2,996 posts, read 5,190,807 times
Reputation: 3078
Quote:
Originally Posted by foglover View Post
Lymphedema is treatable, not curable. And for some the regimen of manual lymph drainage, bandaging and compression garments is an unreasonable expenditure of time and money. The various machines are expensive and not always covered by health insurance. Don't get me going. I think the options for lymphedema and lipedema sufferers are an outrage.

Agree completely. Just wanted to go on the record that it is treatable. Just saying it's incurable sounds awfully scary. Hubby has been using compression pumps for two decades. I help him with that every night & take care of his legs. His legs have to be bandaged also.

After hurricane Sandy we had no electricity for a week, so he couldn't use the compression pump. After a few days of not pumping, whoa ! When our power came back the first thing hubby said was "I have to pump now !"

The health insurance companies don't make it easy to obtain a compression pump. That should change.

Last edited by daliowa; 04-27-2014 at 06:07 PM.. Reason: edit
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Old 05-02-2014, 09:01 PM
 
Location: Australia
9 posts, read 9,939 times
Reputation: 10
Hope it gets better quick. Have you thought about - Cellulite Annihilation? (google it). My cousin got great results with it.
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Old 06-08-2014, 05:21 PM
 
Location: Wake County, NC
1,210 posts, read 1,655,705 times
Reputation: 1873
Thought I would give an update. I saw a dermatologist on Friday. She specializes is autoimmune issues. Right now, we have a "working diagnosis" of Livedo Reticularis with painful nodules. It's vascular. It may be related to my diabetes, but it could also be autoinflammatory. We're going to do a trial of colchicine (anti-inflammatory) and a topical steroid lotion for 2 weeks. If it gets better, we'll know it's autoinflammatory. If not, we'll keep looking. Given my history of lupus like symptoms, there's a good chance it's related to that. I'm just glad I found a doctor who's not passing me off to someone else!
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Old 06-08-2014, 10:51 PM
 
2,996 posts, read 5,190,807 times
Reputation: 3078
Quote:
Originally Posted by rabbitsong View Post
Thought I would give an update. I saw a dermatologist on Friday. She specializes is autoimmune issues. Right now, we have a "working diagnosis" of Livedo Reticularis with painful nodules. It's vascular. It may be related to my diabetes, but it could also be autoinflammatory. We're going to do a trial of colchicine (anti-inflammatory) and a topical steroid lotion for 2 weeks. If it gets better, we'll know it's autoinflammatory. If not, we'll keep looking. Given my history of lupus like symptoms, there's a good chance it's related to that. I'm just glad I found a doctor who's not passing me off to someone else!

Glad you found a doctor who is trying to solve the issue. Good luck.
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Old 06-23-2014, 09:15 PM
 
Location: Australia
9 posts, read 9,939 times
Reputation: 10
Good doctors like that can be hard to find, so I'm glad you managed to find one.

I hope she gets to the bottom of it and things work out well for you.
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