1. Dercums Disease is in the top 10 most rare and painful diseases. But due to
    Deb Dopson Deb Dopson Australia says:
    May 25, 2020 at 7:12 PM

    Dercums Disease is in the top 10 most rare and painful diseases. But due to being so rare, you don't often see it in any list. There is hardly any awareness for it. It is like having cancer, lupus, fibromyalgia and some, all at once. But instead of killing you quickly you have an incredibly slow and painful death, could take 40 years, until you die of heart failure. And drs tell you sorry I can't help you, you just have to deal with it. One specialist in the world for it. A one in a million disease. Any awareness could be life changing for us. Love n light oxo

    Reply
    • Dercums Disease
      Lisa Gallahar Lisa Gallahar United States says:
      March 23, 2021 at 2:26 AM

      Hi Deb:  you’re right Deb, if it’s rare, it doesn’t seem to make the cut.  I have Interstitial Cystitis (Painful Bladder Disease). Four years to finally get a diagnosis. It is high on the list of suicidal diseases.  But hey, two of my others are on the list; kidney stones (another rare disease Medullary Sponge Kidney) and sciatica.

      Reply
    • Heart Attack
      Lisa Gallahar Lisa Gallahar United States says:
      March 23, 2021 at 2:29 AM

      I don’t know how I could forget this, I also had a heart attack in 2010.

      Reply
    • I have Dercums Disease, it is a far worse pain than many on this list. I
      Robert Davis Robert Davis United States says:
      September 21, 2022 at 5:29 PM

      I have Dercums Disease, it is a far worse pain than many on this list. I have Fibromyalgia, it is a walk in the park compared to DD. I would rather have a kidney stones in both kidneys at the same time than have DD. Like you said very rare condition, only 1 out of 200,000 have it.

      Reply
    • I have Dercum’s, fibromyalgia, and I’ve also had trigeminal nerve attacks
      Carmen Garcia Carmen Garcia United States says:
      June 26, 2023 at 9:54 AM

      I have Dercum’s, fibromyalgia, and I’ve also had trigeminal nerve attacks in my face. For years, I thought my main problem was Dercum’s. Unfortunately, it’s not. I have a condition called him MCTD multi connective tissue disorder. MCTD is what caused my bladder to quit suddenly, and my hands just start dropping things which are clear signs of MS. I have arthritis, lupus symptoms and tested positive for RA twice and suffered with leg pain for 25 years until finally diagnosed with MCTD. If you have Dercums, Fibro, etc. I would highly suggest you go to rheumatologist and have them test you for MCTD. It will save you a lot of heartache and pain that I went through for 25 years. There’s a test your GP can use, but I would recommend going to the rheumatologist. My MCTD test with my GP was negative. The one my rheumatologist did which isn’t just a straight up test, but involves them looking at levels etc. on a case by case basis, is the one you need to take. My leg pain that haa been constant for two decades (which led me to have three unnecessary back surgeries that ruined my back to the point I was given disability at 49 years oldj) turned out to be Myleoitis, which is one of the big branches of MCTD. I’m not commenting here on the article. I think it’s a terrific selection, although I do believe that the over arching condition of Durcums and Fibro are varying levels of MCTD.

      Reply
      • MCTD
        Donna Baxter Donna Baxter United States says:
        July 7, 2024 at 11:40 PM

        Hello Carmen.  I've had disability, rheumatoid arthritis, etc,., etc. I'm 58, appreciate your post as i just found a new rheumatologist to check in with after nearly 20 yrs.  Almost every test came back normal.  I'm going to request the MCTD test tmr am.  Thank you so much for sharing.  May we all find strength together and pray for those who do not have the resources to get help.  Lastly, shame on the DEA for OVERREACTING/OR TAKING THE WRONG ACTION regarding the opioid crisis a few yrs back.  I felt shamed and quit on my own.  Prior to that I could get to the grocery store, my sons' activities, exercise and BBQ.  I'm now back on Tylenol 3 and "afraid" to tell my physician that I'm not getting the relief I got just a few months ago.  She is the most wonderful provider that I've ever had!!!  I am afraid that she will be harassed by the pharmacist, DEA, and others.  I lowered my social expectation for myself and went back into a domestic violence marriage.  How has this helped me or anyone.  My sister-in-law has an "unknown" condition as well and horrible migraines her entire life.  Thx to the DEA, again, a compassionate doctor was reprimanded solely for doing his job.  She has suffered her entire adult life.  May God give us enough strength to have advocates come forward when we can't.

        Reply
        • I agree with the DEA taking away our meds when it is what is causing the crisis and people need to turn to the streets and self medicating
          Kelly Combs Kelly Combs United States says:
          August 27, 2024 at 7:40 PM

          Self medicating sucks but it’s not like you can get it from a doctor anymore

          Reply
        • Some drugs are bad, mmkay?
          James Swalgen James Swalgen United States says:
          September 22, 2024 at 8:28 AM

          I 100% agree that the DEA made all of us responsible chronic pain victims suffer more. Now they have this MME (morphine mg equivalent) system that ansolutely screwed everyone who has been on opioids long term.

          I also suffer from back pain (several multilevel nerve  impingements from herniations),3 collapsed disks, DDD on multiple levels) sciatica (which I can't stand at all. I'd rather sit on a bowling pin the long way than deal with that lightning storm) (if you have sevear sciatica, you absolutely know it. I have a spinal cord stimulator which has worked lovely with the nerve meds and pain meds, and also pain in multiple joints after my wild lifestyle in my 20s and having to have at LEAST 15 general anesthesia surgeries, so far...

          I know that it's absolutely frustrating to be looked at, and judged the way most doctors are doing now, however... If you go to a pain management doctor, and it's a pretty straight forward, and obvious that pain is ruining your quality of life, 100% make sure your doctors know about it.
          They know if youre lying and can tell if you're truly in chronic pain in 5 mins. Your blood pressure raises, constantly have a concerned look on your 00face, and you constantly have to readjust the position you're sitting in to be "comfortable.." These are the obvious tell tale signs that you're actially in pain.

          I was sent to a pain management doctor, and basically because #1 I've already tried , A,B,and C "treatments", and #2 I have positive, well documented test results that prove the pain is real, the pain doctor wrote a letter to my PCP explaining the situation, confirming that my ailments are painful and not all just between the ears; she suggested a few opioid options for me to try.

          It took some time to find what worked for me, but now after breaking just about every bone, getting fed up with not being physically able to do the simplest if tasks, I finally "gave up" on toughing it out and now I'm a well established chronic pain patient... At 34 years old

          I've already approved for disability but after being told the m a measly amount each month ($2500... A MONTH...)I decided against it (except part A, B and D) because why should I have to financially suffer too, and lessen the lifestyle that I choose to live...

          I can say that being without this medication, really messed my life up badly. Socially, physically at work, effected my relationship because I was always so grunpy and miserable to be around... So for others as well as for myself, I finally signed the pain contract and thankfully im now able to manage the pain to a dull roar and continue living a life worth living...
          But moral of the story. The squeaky wheel gets the oil. You don't have to suffer and feel like you're doing something wrong because what you're doing is simply advocating for yourself. No one else knows your pain and your body better than YOU. Just because 1 doctor doesn't want to wrote the Rx, but if there's a textbook, black and white reason for the constant pain, these doctors should 100% do what they were trained to do... prescribe and manage medications.

          I'm sorry to read everyone's horror stories, and also that you had to read mine (lol) just know that you're not alone and the struggle is real. Advocate for yourself times 8636918261!! Dr's won't know how bad it is, unless you tell them. My Dr looked at me when I asked, and honestly said to me, "What took you so long..." read that last part again. I promise you don't have to completely suffer.

          Reply
The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News Medical.
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