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Life With Lupus

I may have lupus..?


#1

I am a 31 year old female. I have suffered from fatigue ever since I can remember that just got worse with age and stress. I have a 3 yr old and 1 yr old which means I went through two pregnancies in a relatively short period of time. I developed carpal tunnal with the first pregnancy that worsened with the second. It’s actually a bit difficult to type this up so I will keep it short. My wrists hurt and my fingers are hurting as well but mostly they are weak and i experience numbness at night. I also noticed in the past couple days that I started to develop small herberden’s nodes on my distal joints. I also have pain in both ankles, sometimes a little cracking noise when i walk too. my swelling is actually minimal. My fatigue is immense. the stiffness when i wake up in the morning is difficult but often by the late afternoon it gets better and then returns right before bed. I lost hair after both pregnancies and this time around it still hasn’t stopped, i lose at least a good clump every showering. I had a lot of hair to begin with and i notice its not as heavy as it used to be. I have a hard time with focus. I also noticed for the past 3 years ive had a 99 temperature every day pretty much. i don’t know if its the thermometer i have that is ultra sensitive its an ear thermometer or what. I was told by my PCP it’s fibromyalgia and osteoarthritis, but I feel I am too young. I have a good amount of muscle mass but I am also overweight and the sicker i’ve felt the more the weight has piled on. I am currently at 185.

I don’t have insurance and my father, who is my pcp (he is an internist) doesn’t agree i need any testing for autoimmune because he says the test is expensive and that I am not showing the symptoms of it.

Any suggestions or feedback would be helpful. I am very depressed at the weight gain, the inability to exercise, the lack of energy. my children have to be in daycare all day and i barely have time or ability to spend time with them, dress them, feed them, bathe them, hold them. i am making my husband a single parent and i dont want that.

the other suspicion is Rheumatoid arthritis?


#2

Hmmm, nice to meet you, fresco, but sorry you’re in this predicament. I don’t know much about lupus, but I have a question for you. Do you have any skin or nail problems? Like rashes, ugly toenails, dry skin … nuisance stuff like that?

Seenie from Moderator Support


#3

**Hi fresodecacao,

I’m sorry you are going thru this at such sa young age and with two little ones. Unfortunately without testing there is no way they can diagnose you properly. I was tested for Lupus and Sjörgrens when my youngest was 18 months old. I had some of those symptoms but my illnesses were so aggressive I could barely walk. Had blisters on the palm of my hands my face inside my mouth and nose my joints were so swollen I looked deformed. My back hurt so much my PCP told me he had no clue what was wrong with me but he would test me regardless of my age. I was only 32 then so he said if it came back negative we would have to pay out of pocket because our insurance wouldn’t cover it. My husband and I said we didn’t care we jus needed to know what I had. So it came back positive for Systemic Lupus Erythematosus and Sjörgrens syndrome. Thankfully I found a great rheumatologist who has kept it pretty much under control and in 2015 I was diagnosed with Multiple Serosis as well but I completely understand what your going thru not being able to care for my little one back then was the worse part for me he was so little and it would break my heart. Wish you luck my prayers are with you and feel free to message me whenever you want. It’s possible for you to feel almost as normal as before with the right treatments so don’t give up hope. My niece has fibromyalgia and your symptoms sound somewhat similar but for that you would have to be tested as well. My hair gel off almost completely as well but it has grown back. So that too will be fine don’t worry and I lost slot of weight I was always thin but went down to 98 lbs and get up to 110 at the most but that’s the least of my concerns so don’t stress about your weight that’s something minor to worry about. Your focus should be on getting diagnosed.

Sending you hugs,
Mary


#4

Hello! So sorry for you and the issues your health is causing for you. Your symptoms are very similar to mine. I was diagnosed with Lupus one year ago, but I suffered for 40 years with all of the symptoms that you’ve described. Since Lupus is a disease in the rheumatoid family I think you are correct in suspecting Lupus. Autoimmune diseases are so poorly understood that it seems the majority of health professionals don’t recognize the huge array of symptoms associated with it. I hope you are able to get the care you need. What about asking your physician for a simple ANA test? It’s one blood test and a positive ANA is proof of autoimmune type inflammation. I can’t imagine that that one test would be too expensive. ANAs vs RAs are different tests. I always test positive with an ANA and negative for RA. It may be something for you to look into. Trust your gut. It’s your body. Be proactive to get the help you need. Good luck :heart: