Who experiences this? (Need comfort and advice)
I was wondering if anyone here experiences the same symptoms I have? I have been having cardiovascular and digestive troubles the past few days. My blood pressure goes down while my heart rate goes up even with meds and even if I am just resting. Then I have fever, severe stomach ache and joint pains all over my body. I feel itchy and foggy too.
I was having chills too and cannot digest much food other than porridge and other soft foods. I have several mouth sores and rashes in my ears and neck too..
I also have a weird sensation in my legs as if I am having urinary tract infection and have this pain at my lower back.
I feel so bad and it seems meds are not working as it should. I have been absent for some time now from work and it seems I am not getting better.
I am starting to feel down, sad and anxious. I love alone and cannot reach my family easily (because they are always busy).
I don't want to go to the hospital yet because I have been there just last week
If anyone can give me advice/s on what to do please do. Thank you so much
I'm so sorry you are going thru this! Hang in there!
I've only been a Lupus warrior for a year.
You are stronger than you think!
Much love and support!Rese, Just about every symptom named we have one time or another. I also have other diseases that sometimes I do not know which one it is. I am 88 yrs old and diagnosed with LUPUS SLE in 1999. I live alone and have 6 adult children who all live far from me. Being alone can be bad but, even good at times. Sometimes we cannot stand the noise of the voice of another human. On the stomach issue, just eat light. Soup is good, grilled cheese is good and cereal and milk work for me. Plenty of naps and I am a Christian and love having my iPad read scripture to me, especially the Psalms. One thing to do to keep the heart in good shape is not eating food with MSG and Nitrates. An example of foods in pkg like Ramen Noodles etc. There are now plenty of dried foods that have no nitrates. I live in TX where we are in triple-digit temperatures, DO NOT GO OUT! lol. Some meds like aspirin and statins can cause heart attacks with extreme heat. For ears itch/rash I use over-the-counter meds for that, just a little bottle of liquid that I put in each ear with a q-tip. Did not think I would write a book here. These are just some ways I exist. Prayer for you, Phyllis
, I'm so sorry you are experiencing so much pain and discomfort without solid support around you. Lupus is a cruel condition that has a way of wreaking havoc on seemingly all parts of the body. It would be enough to cause anyone to feel down, sad and anxious. While I haven't personally experienced those symptoms, I would encourage you to reach out to your Rheumatologist or primary care doctor to see if a different treatment plan might work better for you. If you are feeling dismissed by your healthcare team, you are always in the right to seek a second opinion. You should have doctors that you feel really listen to your concerns and take you seriously. Here is an article with some tips to help manage the mouth sores you mentioned: https://lupus.net/symptoms/ulcers and another with some tips to help ease joint pain: https://lupus.net/living/joint-muscle-pain. If your fever continues to get worse, I would encourage you to seek immediate medical advice and care. Sending you gentle hugs! Keep us updated!
Gabby (team member)
sorry that you are dealing with so many symptoms. It’s always good to go back to the doctor with a list of your symptoms so they can evaluate and help find treatment options. I can understand feeling overwhelmed and even scared and I’m holding space for you to get some relief. I don’t usually wait because lupus can creep up with serious issues so quickly. Gentle hugs to you. ~Racquel~ lupus team member
