Getting very frustrated. I have autoimmune disease, hypothyroid, sjogrens, psoriasis and interstitial lung disease. 

Apart from lumps in lymph glands all down my arms, breathing issues etc, last night my feet were icy cold, could not get them warm, but the soles of my feet were burning. Does anyone else have this. All my tests come back fine, but I'm suffering bad fatigue, sleep most of day and night, my arms are getting weaker and can't organise myself at all. Went out for lunch yesterday and it took me forever to get organised and fell asleep as soon as I got home...

9 Replies

  • So sorry to hear that you're suffering from so many health issues, I can empathize with most of them.  I've never experienced or heard of the icy cold feet with burning soles.  But when you describe the lumps from your lymph glands, I wondered whether you know about Dercum's Disease (adiposis dolorosa)?  I have many lumps and have been diagnosed with Dercum's, so just thought I'd mention it as a possible explanation of your lumps.  Hope someone else here can solve the mystery of the icy & burning feet!

  • That is quite scary, seems there is no treatment for adiposis dolorosa. Do you have weakness in your arms do to it?

  • The problem with your feet sounds like Peripheral Neuropathy. Have any doctors told you that you have PN?

    Unfortunately these infirmities are our lot in life and I have come to realise that no-one is ultimately going to rescue us. That's why we need family and friends who understand and can support us. 

    Message boards like this, of like-sufferers provide a sounding board between others who truely do know many of the difficulties.

    I hope you are feeling a little better than you were!

  • No, it's not been mentioned. I quite often get pins and needles for no reason too. Thank you. 

  • I have weakness in my arms and legs, and some days are worse than others.  Also have lumps on arms, legs & trunk, extreme fatigue, lethargy, dry eyes & mouth, and difficulty concentrating to complete complex tasks.  Did you think your lumps might be caused by adiposis dolorosa?

  • Sorry Xxxxxxx, I just saw your question.  I have weakness in both arms and legs, but have no way of knowing if it's related to the Adiposis dolorosa.  I also have chronic fatigue and thought that maybe the weakness was due to lack of vigorous exercise. There is no cure for Adiposis dolorosa, but there are some treatments that may be helpful.  For example, lymphatic massage, the RAD diet, and light exercise are recommended.

  • sorry y0u are ging thru s much  iam 75 an I have a darnf feeding peg.  I hate living alone now that my husband passed awy also have my dog I had to give away my sonn law sister as sjorens but seems  she can put anything they make formeals she puts down her j tube.  minei in my stomach and going oday to tryto find a dr to help manage it.  I have n gi dro 1 1/2 went mostly to duke which is really a teching hospital anad they came up with all these diagnosis  just guessing.a I was suppose to have adigestive  before they ever placed thetube and now I cant get off it and stillnot a n

    over all physical. I guess once  u get a tube you are stuck with it

    youneed to try and move around I have gaind from 85-110 about what I should weigh. my main problem isallb congestion,post nasal drip and mucus all day long so I cant swallow it with eating.  do you have peg ith sorgens. most f my drs did no listen to me

    at all until finally go  germn brain research fellow and he I tyring to ge me well last moth I had 40 injections of botox. it did not make me look better now my left eye is drupy andmy smile is crooked. I feel for youtiwhall youhave it is not easy to get all these weird things and out probably 40 drs seeig me only one isgood thegerman

     did have a septolsty nose was broken an bad devited septum and scraped the tubrines  also an ablation fthe spg nerve beside my left nose and finally theawful burni feeling went awaybut left side of my face still numb and no cure for the mucus. any ideas how to help it.  I have been seeng an holistic dr phd in herblogy and a new drink ik I make to help cleans by boy with almond milk and a banana

    can you eat regular food?  I also pd for 25 years long term careand I get gals not even qualified as a nurse that give me a bath, help me dress so I don't fall and keep the place clean and fold my clothes.  I a moving a bloc from the beach for my dr at duke said oceanair helps get rid of I guess called catarrh I have and no dr knows where it is coming from  I have to live alone now which I liked till I got so sick and my assisted living is paid for but I can get in for I have a food peg.  it isridiculous for a nurse can do nothing  for me. I do 5drinks a day of compleat I do myself and grind all my pills. they are blamn medicare and I called they don't require anything they all lie probably for liabiili   seniors sure cant be big sissies.

  • Oh I do hope you improve soon. 

  • Yes i have sjogrens and all your symptoms plus extremely painful dry eyes and like you find it all extremely frustrating but we have to carry on! Are you taking plaquenil? I must say i have feel feeling more engergised after 9months of taking plaquenil. ...i definitely dont need to sleep as much during the day as i used to, just 10hours at night....i sympathize!

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