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dercums disease

Posted , 9 users are following.

evie649
evie649

Hi, I have recently been diagnosed with dercums disease after many years of suffering and doctors putting the symptoms down to other things ie underactive thyroid (which i have ) and the menopause, I am currently doing research into this disease to find out if there are any common links, so i would be really grateful if you would share your symptoms with me. I have experienced the following;

Weight gain particularly over the areas where the lipomas are.

Extreme itching over some of the lipomas (no rash)

Extreme tiredness coupled with an all over pain

Pain & stiffness on getting up first thing in the morning and the same after sitting for a while.

Difficulty climbing the stairs

intermittent deafness

burning pain in feet

difficulty sleeping.

I suffer with asthma & sometimes need to take high doses of prednisolone

Underactive thyroid for which i take thyroxine

i take omeprazole daily for acid reflux

and i take cetirizine daily to help with the itching

Thank you for reading this and hopefully some where along the line we can help each other and maybe find a link. Keep Smiling !! smile

1 like, 6 replies

6 Replies

  • PaducahSAM
    PaducahSAM

    Posted

    I have similar symptoms and have suffered approximately 20 years. I have recently been pain free due to a change to a pH balanced diet. Please research this. I recommend eating as much alkaline and little acidic food for about 4 days and see how that works for you. Basically, no coffee, no alcohol, no tea or soda, no sugar or carbs. Drink plain water or water with lemon. Eat fresh fruits/veggies especially pineapple, bananas, and citrus fruits. To curb hunger eat almonds or almond butter and/or wild rice. Once you get your pH in balance you will no longer have those painful burning lipomas. When the pain starts to return, you know you are getting out of balance and need to eat more alkaline. Good luck. You can do ANYTHING for 4 days. Be sure if you have other conditions that you involve you doctor before making drastic dietary changes. Do not go off of your meds that have been prescribed for you.
  • paulinej
    paulinej evie649

    Posted

    I have now been diagnosed with Dercum's disease with very similar symptoms to yourself. I have no intermittent deafness and limited itching.  An additional symptom is that I have trouble regulating my temperature.  If I get hot it is difficult for me to cool down and visa versa if I get too cold.  

    I take throxine and omeprazole and amytriptyline at night to help with the itching.

    The pain from dercums has become much worse over the past 18 months and I have now been approved for lidocaine infusions to help.  

    It was interesting to read PaducahSAM suggetion of change of diet.  It is certainly worth a try.  Acidic food would certainly contribute to acid reflux so it does make you wonder if diet could help.

  • dawn_921
    dawn_921 evie649

    Posted

    Your symptoms are exactly as mine are. I don't know about dercums. I have mannnnny hard lumps by my sides and abdominal a few on my back and one on each arm that mirror. I'm short of breath. Exhausted weak and have much pain all over I'm afraid and keep comming up with articles about sarcomas. How did u find out it wasn't cancer. Please tell me more. I'm so scared. These are very hard. And some feel bumpy. ( the bigger ones ). I feel there tender to touch. Thanks. And blessings to you. Dawn
  • bill38615
    bill38615 evie649

    Posted

    Hello,Evie,

    I have not been diagnosed as yet but share most of your symptoms. Where I have the lumps is the main torso,back,thighs and knee. Yes they iche like crazy at times but also painful at times. I have real stiffness in the morning and after sitting for any length of time,driving any distance is a challenge! The few symptoms I do not share are slow thyoriod,and certainly not menapuasal as i am a middle aged man (53). I will watch this space with interest as my GP refuses to label me?

    Regards

    Bill

  • kirra2481
    kirra2481 evie649

    Posted

    I have been recently diagnosed with Dercums after years of not knowing what it was. I have a lump that is the size of my fist on my back which is the biggest and one just a little smaller at the back of my left knee which has over 20 smaller ones around it. I get terrible pain in my legs and surrounding the lump in my back is a constant ache that I have learnt to live with and  I am very slow to heal. I have multiple lumps in my breasts that have all been looked at via ultrasound. I have been showing symptoms since my mid 30's but now that I am just shy of 46yrs it has been figured out. The pain varies but I live a very very busy and active life. I really watch what I eat and even though I am 40Kgs overweight I am very fit. 

    I find regular massages really help and I see my chiropractor every other week which makes a HUGE difference.

    The thing that I cannot understand though is if my episodic hives are related. If I sit for long periods of time I am stiff and struggle when I first stand up, also if I wear tight shoes/jeans/bra I will get hives on my feet, waist under breasts that look like I have cut myself. In summer the combination of heat and pressure really knocks me around and if my hands and feet swell up it is like they are burning from the inside out. I take antihistamine most days and that really keep the itching and hive under control.

    I have no other issues except minor osteo arthritis in my hands, I take no other drugs at all. I rarely even use paracetomol. 

    I have to say that cutting sugar completely (even in curry paste) out of my diet has helped enormously. 

    Does anyone else suffer from hives or pressure urticaria?????

     

  • annette53918
    annette53918 evie649

    Edited

    hi i just come across this page..im just waiting to be diagnosed with dercums disease after seeing a general surgeon I have multiple lipomas in my thighs an a couple in my forearm, it's been a struggle to get this far after my doctor not taking my symptoms seriously I have approx 150 lipomas I'm in constant pain just varies in how much, I also suffer from fibromalga im on no medication but do use cbd oil for my fibro which dose help, but to discover there is no cure and very little relief for durcums has left my with no way to turn how do I learn to deal with the constant pain in my thighs im like you I get the itching but not all the time I have some lumps that are very painful, some days its hard to stand or walk so I can't go to work those days, stairs are my struggle to especially on bad pain days i do have days when it really gets me down & sometime struggle to sleep but no weight gain im naturally built I'm not against pain relief but don't want to depend on them for relief so alternative ways to deal with it maybe the pH diet mentioned us worth a shot anything can help

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