I thought this was interesting so I am passing it on. (hope this isn’t old news for the group, to me it is new) This case study says the patient had a 60% reduction in pain.
Treatment of pain in dercum’s disease with lidoderm:
I have the patches. They cost a fortune. They don’t stay on your body very well and tend to fall off and adhere to the soles of your or someone else’s shoe! I did not experience any relief. The doctor gave them to me for my gout and they stay on your foot better. I think they were like $160.oo for a box and last for 12 hours. You will pay any price when you have gout!!!Hugs, Grandma
Oh that’s good to know! I won’t even mention this to that pain doc I see next week!
About Gout - My right big toe hurts sometimes, I mean HURTS! It feels like it is on FIRE! It is a severe intense pain that I have now and then. When it happens at night I can’t even stand the weight of a sheet on it. When I mentioned that to my old doc I got that familiar look that says “you are a nut case”. I searched for info about “burning pain in big toe” and gout came up. I wonder if I have gout if it only happens now and then.
It really is disgusting how we have to use google to figure out medical conditions. My son has a bone deformity - years ago when I first noticed his rib cage was mis-shaped I took him to the ER. Many doctors came in to see him and they did X-rays… they sent us home with no answers. None of the docs in the ER had any idea what he had but knew it was not normal (I knew that already, duh). I did a google search and had a name for it in 30 seconds. (can’t remember the name right now though!!) It is a genetic thing and a high percentage of people with it have heart problems (you know, like when a 20 year old drops dead and they find he had a heart problem at autopsy) ANYWAY - I had to argue up and down with the doc we had then to get his heart tested!
I might use Google BEFORE my next doctor visit if I have a new problem. It has helped me more than doctors and doesn’t require a co-pay!!
Grandma Sylvia,
Do you eat mushrooms? If you do stop it. There is lactic acid in them and they will cause you to swell. Actually there are quite a bit of foods that have it in there. do a search online and see what they are. They will make your gout 10x worse. My grandmother worked at birdeye veggies and had gout. She worked in the mushroom dept and wondered why she couldn’t walk after eatting them all day. LOL she didn’t know that it was the lactic acid.
Suri,
that is a near perfect description of gout. It is especially bad at night and even the sheets touching it is unbearable. A Gout attack is easily stopped in it’s tracks if you get to the doctor right away. Next time, tell them you are having a gout attack and insist they help you.
Hugs,
Pamela
Thanks Pamela 
From what I read online I thought it was gout but when I mentioned it to my last doc he looked at me like I was a nut. I swear, I can’t believe it sometimes – about some doctors not having a clue and not caring to find out. If they haven’t heard of it then it doesn’t exist to them. Grrrrrrrr
Suri,
gout is not rare. If your doctor doesn’t know about Gout, he is an incompetent idiot and you need to find a new doctor immediately, IMHO.
Hugs and spoons,
Pamela
I think my old doctor probably knew about gout but he just thought I was nuts and making up pain. I have joint pain, lower abdomin pain, upper right abdomin pain, lipomas that burn and sting, back aches, head aches, and my big toe hurts… That doctor told me I was too young to have all these problems – so he thought it was all psychological. Oh I still get mad when I think about it. The mental pain he put me through. That was before I knew about DD and I actually questioned my own sanity. I was freaking out thinking my brain could possibly be causing my pain. I thought that if that was true I needed to be locked up a looney bin. I am glad I had my husband and father to pull me out of that mental pain… they KNEW it wasn’t in my mind and convinced me that I wasn’t insane!
Oh My, Christine!
I wonder if that why I have been in such agony? The food pantry I went to last week gave me three tubs of fresh mushrooms and I love them! I have put them in salads, in spaghetti sauce, and even eaten them right out of the fridge. This couldn’t have been gout, since it was not confined to the joints, but I do wonder if it was increasing my pain now. I had no idea mushrooms were bad for gout!
Hugs,
Pamela
I have had that same pain since 2000 and even had a shot of cortisone in the area but it is still bad.I was tested for gout and it was negative…So I can only think it is DD related as that is the same time my lumps started showing up in bigger numbers…
Nothing makes me angrier than hearing about a doctor making yet another suffering man or woman think they are a hypochondriac! I was made to feel that way all my life and got to the point I wouldn’t seek medical help until I was literally dying. My doctor phobic behavior has nearly cost me my life several times. I think they just say it is Physco-somatic when they are too lazy (or stupid) to figure out what is really going on.
Hugs,
Pamela
I have always been really careful. My grandmother’s gout was soooooo bad. Her knees looked like she had bowling balls on them. I used to cry with her when she would have to have them drained from fluid building up so bad. I have always limited my mushrooms since then. I know what you mean about loving them. I was wrong…It is uric acid.
Read the following article
I just hate it when I type something and it disappears! Starting over now…I think we may have pseudogout…Google it. Drink 100% real cherry juice to help prevent it…I mix it with diet 7 up…it is expensive…you can get it at Giant Eagle…I am allergic to mushrooms the only thing I am allergic to…except for the sulphites they use in a lot of stuff…I had a reaction to mushrooms that made my throat almost swell shut…My lips looked like an Ubangi. I love my PCP Dr. Ann. I have gone to her for 20 years. I don’t know if she knows about Dercum’s. I will take her in some info on it. I had a lot of bad mean doctors before I found her. Now, I would not tolerate that. There are good doctors out there. Dr. Hackshaw my rheumatologist is for being kind and wise and he is the one who told me I have DD. I have so many other diseases that it is hard to treat me. Like with my feet. The foot and ankle specialist I finally found said to come in during a gout attack for blood work. I had a MRI of my foot and it has torn ligaments, is badly sprained (all the time), arthritis and rheumatism and so on…he said have too much wrong to do any surgery! I have Charcot’s foot. The ligament pulls across your foot raising your big toe off the floor and bending your foot. That is what causes gangrene. You can’t feel the bones breaking because of the neuropathy. That big toe joint is always purple and it jumps a lot. When I first get up and hang my feet over the side of the bed it starts jumping as the blood flows to it. That last gout attack was in my whole foot and ankle not just in the big toe. It was the worst pain I ever had! So I have arthritis in the big toe joint and the purplish color goes halfway up my leg. My feet are very numb and swollen and so are my ankles. Keep looking until you find a new doctor and stand up to the jerks! Don’t let the turkeys get you down!!!Hugs to All, Grandma Sylvia
I feel so bad for you Sylvia, and all who are suffering. I wish I had a magic wand, I would let you all use it. (but I would want it back when you got done!)
I just can’t imagine all that pain when I have so little compared to most here and I can barely tolerate it. I cannot push a grocery cart anymore without pain. I wonder if anyone else experiences that – every time I push a cart I get lower abdomen pain and the stinging lipomas. It is like pushing a cart triggers my pain. I almost always come home from the grocery in horrible pain. Oh but then again, a lot of moving actions trigger my pain. I was doing good the other day and I unloaded the dishwasher and had to go lay down (in pain)
You are right Pam…Gout is the worst! Thanks Christine for the great article. John takes a fish oil capsule every night. He keeps them in the freezer so they don’t burp up! He always asks if I want one and sometimes I do but not always. After reading the article I had him bring me one and will take them from now on! Thanks SuRi for your empathy. Nothing like a nice pity party once in a while! Especially when thrown by this great bunch of fellow lumpettes! I ride the grocery carts now and I don’t even care about the 80 year old women walking past me! They are obviously not members of the exclusive lumpette sorority! : ) : ) Hugs, Grandma Sylvia
I knew you meant Uric acid, so that’s the way I read it. I didn’t even notice the mistake. Gout is the worst pain I have ever felt. I hate that more than I love mushrooms!
Hugs and spoons,
Pamela
Dr Herbst highly recommends taking fish oil daily. Just FYI.
Hugs and spoons,
Pamela