Pam, just come on over and you can stay on my couch! We would probably sit here “talking” to each other on our laptops as that is how we are used to communicating! Hugs, Grandma Sylvia
Great idea, Sylvia! I hope its a very soft, comfy couch though! I’ll be right over.
Hugs,
Pamela
Well I didnt think I could feel much worse and then BAM I did…The day after Thanksgiving I was wiped out…I am not going to be able to keep on cooking for every body on holidays…
Then on Sunday I helped my husband in the barn a little and it was horrible…I was so thirsty and sweated a bunch so that in 50 degree weather I had to take off my coat…Then when we were done I hadto put my hair in my coat because it was wet from sweat…this has been horrible for me…I also see the same things that happened to me (getting sick all the time) happening to my daughter…I told her to check herself for lumps…My foot has a huge lipoma in it and it is losing feeling more every day…I want so bad to have it out…I checked and the lumps are over abundant in my stomach area …in fact all over my abdomen…And most of the lumps in my apron are right next to the two c section scars…the one I started with in the stomach area is larger and has buddies aongside now…Does anyone else have severe indigestion even though you take Cimetadine?? I take extra pills when its bad and also take some acidophilis and eat yogurt daily…I wondered if the lumps can cause severe upset in the stomach or if they surround the stomach can it cause it…sorry this is so long…Im feeling the indigestion now…
Hi Elaine,
I have terrible heartburn too, but I can not take cimetidine. When I did (before the metformin) I still had heartburn. Dr H says its okay to also take one of the newer rx meds for acid reflux though. (sorry, my brainfog won’t allow me to remember what they are called-the purple pills, lol)
Hugs and spoons,
Pamela
Pam…the purple pill is Nexium…may be expensive…maybe Elaine can get a RX for it at a level covered by insurance if she has any. Also, Elaine…the large lump in your foot…what part of the foot is it in? I have a big bone spur and plantar fasciitis and boy that can really hurt. I am sorry that you are feeling so ill. I think a lot of us are worse than ever this year. Hugs, Grandma Sylvia
I have horrible digestive problems, heartburn, IBS, I usually take the Tagamet but sometimes it causes more problems than it helps. When I take it I can only take one otherwise I have severe lower bowel problems. Its another wonderful mystery of DD…
The lump is in the ball of my foot…It is affecting the toe next to the big toe.I can feel something in there… Also the top of my foot has a large diffuse lump on the top of it…The toe is crossing over the next toe…I wore sneakers to do some work and it killed me to wear them…I have had sharp pains in that foot in the large toe but they say it isn’t gout…
sorry I got cut off in mid sentence…I found a new browser because Explorer keeps having problems and I’m not used to it yet…Anyhow, the sharp pain is in the big toe and joint but not gout…I’m just falling apart…I have to make my husband check different lumps now and then so he doesn’t think I’m faking it…
I get the toe joint pain too but I can’t find any lumps there!I do the same thing with my husband – I make him feel a lump now and then because I get the feeling that he thinks I am faking it. He always tells me he is on my side and believes me but I guess having doctors not believe me makes me paranoid that everyone thinks I am nuts. I always say “I am slightly nuts but I am not completely insane!”
Do you think the lumps on your foot could be a bunion? I don’t know much about bunions but my mother had one and had to have surgery to cut it off. It sort of looked like a big lipoma. She got to the point where she couldn’t put on a shoe without pain.
Hope you get some relief. Wishing you well 
Suri
I get the horrible IBS and digestion problems too. The other day I started cramping so bad I thought I was going to die. The pain was so intense that I couldn’t even talk. I really hate having all these problems!!! I am glad we can talk about it here… I think my husband is sick of me whining all the time. I told him the other day that I bet he wishes he had a dollar for every time I said “My Legs Hurt” He joked and said he could probably retire early! LOL!
www.emaxhealth.com/21/971.html
www.podiatrynetwork.com/document_disorders
Elaine…it sounds like it may be a Morton’s neuroma…just search lump in the ball of the foot…good luck!!! Hugs, Grandma Sylvia
For my foot pain sometimes I freeze a plastic water bottle (not full) and after it thaws some I roll my foot on it.
Sometimes I feel like a creep for suggesting that people try using oxycodone (or oxycontin–same thing with extended release time) for the intractable pain of this disease. Most opioid formulations (like Vicodin or Vicoprofen) contain the opioid plus a decent amount of either tylenol (acetominophen) or ibuprofen. The problem is that the use of opioids inevitibly leads to tolerance and chemical dependence. This cannot be helped, only “coped with”, like taking fiber and other laxatives to counteract the also inevitable constipation. Your doctor, friends and significant other will likely also think you have become a drug addict (that is, if you can even find a doctor (ONLY ONE DOCTOR and never more than one) to prescribe these for you. Once your tolerance develops and you need to take more and more of the medication to provide the same amount of pain relief, you will not (or no longer) have any kind of euphoria that causes addiction in susceptible people. But if you are taking an opioid mixed with tylenol, aspirin or ibuprofen, you may get to the stage of truly poisoning yourself (liver malfunction with the tylenol or digestive bleeding with the NSAIDS). All this is impossible to explain to any doctor who frowns of presribing chronic opioids for people with non-terminal medical conditions, and just asking for a specific opioid by name can get you labeled a drug addict no matter what your pain problem is. The likelihood of having to use the drugs for the rest of your life is high also. And some people can NOT tolerate the side effects of these drugs at all. I have been using these medicines for a number of years already, and my intake finally STABILIZED although at a frighteningly high dose level. My doctor understands and supports me, but he is unusual. I have about 8 or more doctors and specialists, but only ONE prescribes ALL my medication, and with him I have a kind of a “contract” which places restrictions on my use of this medication. (also I take about 12 other medications for other aspects of Dercums and blood chemistry problems, but the one doctor prescribes all and can therefore check for interactions and side effects. I do not mean to “lead others astray” into using opioids if they are not needed–if ANY other combination of medications deals adequately with your pain you will save yourself a lot of “troubles” by avoiding these. However if your pain is uncontrolled to the point you don’t know how you can stay in the world much longer, then anything that helps you live tolerably is likely better than the alternative.
Hi G.S. and others. I had a nice small business going, till I went on PRIVATE disability after a 3 year “war” with them. Then they wouldnt’t allow me to do ANY gainful work for the 3 years they did end up paying me (about 1/3 of my living expenses). Did not try for s s disability but did take s.s. at age 62 for a bit cut in payments. At that time they had a rule you could pay them back and then get the rate as of when you started again, but without notice they just TOOK THAT AWAY, so now I am stuck the rest of my life with very inadequate fixed income.
When private disability stopped paying, I tried looking for work again and (at 65 and “missing” for 3 years, I didn’t GET any work).
I then made a deal to get royalties on a popular product line I made long ago. But am now “not working” mostly from the couch, maybe 15 hours a day to make it possible to keep my “deal” together.
I can live for 1 more year, maybe 2 before I must sell my house, unless my business deal succeeds. Well at least I will have sort-of-enough to get through a few more years with a modest lifestyle (and with DD, besides what you spend at the pharmacy, what’s to do anyway?) Another sob story from a DD person feeling sorry for self and all DD victims who in addition to having to suffer hell on earth, be treated like a freak, and finally can no longer support themselves, must somehow find WITHIN themselves a reason to want to live and get meaning and sustenance from LIFE iteslf, by whatever name you may call your God.
One pain treatment that helps me a lot is the use of a combination of Voltaren and Lidocaine (separate prescriptions) together, applied locally to an identifiable “area” that is giving off a lot of pain. It’s surprising how these (transdermal) medicines -especially used together, which might not please your doctor very much- can quiet some very intense pain flares whether or not you also use a “whole body” pain medication (tramadol or opioids) in addition.
Mostly there are regions where I can expect pain every day in afternoon or evening, and the external treatments don’t seem to lose effectiveness. And for the “new surprises” that increasingly happen, it also works.
The DEEPER the lipoma, generally the less effective this treatment is. Yet somehow by desensitizing the nerve roots near the skin above the lipoma or the nerves it is irritating, the relief goes “in” further than you might expect.
There are limits to the amount of esch medication that you are supposed to adhere to, and generally your prescriptions may be inadequate to get you through a month. But this treatment, added to whatever other treatments, has become a real 'saving grace" for me and kept my other pain medicine doses somewhat more managable for me and less risky for the doctor who prescribes them.
(the DEA watches both the doctors AND patients for any possiblity of drug abuse, and even sends the doctors “automated” letters if they think the doctor is over-prescribing).
I don’t think any Dercum’s patient, no matter how much they are suffering, wants to lose their doctor (or their doctor to lose his/her license) for prescribing how much medication they actually need, rather than what the DEA thinks they SHOULD need…