Do you have additional health issues?
What are other health issues you face besides your lupus diagnosis?
If I had to list my other conditions in order of discomfort or severity, I would list them in this order:
Discomfort:
Fibromyalgia (autoimmune, connective tissue)Gout (a rheumatic condition; I blame a medication)
Irritable Bowel Syndrome (Diagnosis is being reevaluated to consider ulcerative colitis or Crohn's disease; autoimmune)GERD/Acid Reflux
Hidradenitis suppurativa (autoimmune)
Neuropathy (lupus symptom)
Migraines (non classic, commonly called lupus headache)
Sjogren's Syndrome (frequent eye-lid infections as a result of this condition.
Vein Insufficiency (autoimmune)
Depression
Osteoporosis (i blame a medication)
Severity:
Lupus Nephritis.Shrinking Lung (common in people with lupus, but there is a dispute as to its existence) I am short of breath, dizzy, and light-headed getting up from a chair or walking down a hall. FETV is 60%. I still walk as long as I have someone with me.
Hypertension (since my lupus diagnosis)
Septic Shock survivor (blood infection)
Sleep Apnea
Anemia (lupus)
Can any of you relate?
I have listed my other conditions into two categories.
Severity:
Lupus Nephritis
Hypertension since lupus diagnosis
Anemia since lupus diagnosis
History of Septic Shock
GERD/Acid Reflux
Osteoporosis
Sleep Apnea
Depression
Anxiety
Fibromatosis
Discomfort:
Fibromyalgia
Gout (I blame my medication; rheumatic condition)p\
Irritable Bowel Syndrome with a possibility of Crohns or Ulcerative Colitis (auto immune)
Hidradenitis suppurativa (autoimmune)
Migraine or Lupus Headache
Venous Insufficiency (autoimmune)
Sjogren's Syndrome (frequent eye-lid infections as a result of this condition) (autoimmune, connective tissue)
Shrinking Lung Syndrome (shortness of breath, dizzy, and lightheaded when moving from a sitting position to standing position. I have a a lung capacity of 60% (normal range is 80%-100%)
Neuropathy (related to lupus)
Raynaud's Phenomenon
Can any of you relate?
Christopher Reed Lupus.net Team
@clq2020 I can absolutely relate! I've just added my list. You've organized yours well - I'm sure you're medical team appreciates it. -Ava, lupus.net team
Anna,
Thank you for the positive feedback. Organization is the only way I feel in control of my condition. I now use a time set pill dispensary system so that I can keep track of my medication. Given all these ailments have been able to remain off of disability and work full time. The condition that really impedes my day is fibromyalgia. i think that is the case because of the cold weather coupled with my inability to swim at the gym. The gym was my go to relieve fibromyalgia. What do you consider your most annoying condition. I've heard of Roscea but don't know a lot about it. My friends seems to have similar symptoms, but the derm said it was merely heat rash. Do you itch in the heat and sun? Again, thank you for reaching out and for the positive feedback. We are all in this together.
Warmest regards,
Chris Reed Lupus.net Team
Yes I am totally relating to everything that you have said!!! And they started with lupus forty years ago and then low thyroid and weight gain and hypertension major migraines and over the years my migraines have gotten worse!! Neuropathy and prediabetic then diabetic!!! Fibromyalgia is always a curiosity of mine or was until recently and now it has really shown it’s colors! Of course I had spinal meningitis twice and then I fell not breathing and I had empayema and was in a coma and lost a lot of oxygen before star flight was there! Then I took home MRSA and do you know how hard it is to get rid of the disease when you have autoimmune diseases? I have dealt with MRSA off and on now since and it’s been almost twenty years! Then I got empayema again and another coma! Geez! Took me many years to relearn to do everything again just like a baby would but at least I did it!! Most don’t survive it and if they do they are usually invalid for the rest of their life! So I beat those odds twice! So I relearned and I actually got to get out of the nursing home and get my own apartment!! Yes!!! I was feeling very good for a sick person! Then I got MRSA back really bad and also started having seizures !! I also have COPD AND EMPHAZEMA! Gahl bladder removed! Hysterectomy from a serious hemmoraging ! Seizure seizure seizures!!! I always have had better than perfect vision until now!! I am really losing my sight! I am slowly trying to lose my my hearing but I am really stubborn about that and it’s not as important as all the other stuff I am dealing with. I have lost all my my teeth from taking medicine for neuropathy and now I have ibs too! The last colonoscopy was questionable pre malignant??? What is that anyway? Same thing in my sinus passage from nose to ear!! Oh my goodness that surgery hurts!! You think the nose swab is bad for the COVID-19 test!!? Try to sit still with the giant long needle going up your nose and then scissors to follow them up!! No pain meds or anything!!! And then pancreatitis the non alcoholic kind!!! I was screaming!!! Back to the nauseating migraines that don’t ever have any end to them and sores all over in my nose chin shoulder and back for the last two years! Nightmares IF I SLEEP! My muscles are constantly locking up all over my body! I feel exhausted so I just lay here with my service dog and be sick!! I am not allowed to go anywhere anymore anyway! I was doing good over came all that and now I am worse than ever! It’s like it all over the years crept up on me and whammy me!! I just lay here panicking and in pain and migraines and muscles and,,,, really? Its got to stop!!
@kcarey, it seems like one health condition just keeps adding to another and it's so hard for us to manage and cope with! And all the treatments certainly take their toll as well. It sounds like you really have overcome some tough odds. Thank you for sharing. Wishing you a low pain day! -Ava, lupus.net team
@kcarey. Wow, you are a trailblazer!!!! Thank you for sharing such an intimate part of yourself. I've lived with lupus for 30 years thought back then that lupus would be my only illness. I should tell my younger self something, but i not sure if I can do things a different way. Migraines were the first indication that I had lupus, even though headaches are still not on the ACR criteria list. As I may have mentioned in another posts Fibromyalgia is the bane of my existence because it impedes my train of thought during work, after work, when i am trying to sleep and when i wake up. I have more muscle pain than that arthritic pain. I have had regular colonoscopies since high school because of IBS which seems to look like Crohns. My newest conditions just make me a little sad. I thought this would all end. We are all in this together and the key is lift each other up. I am a true believe in a positive mind. Even if my boss is angry or a client is angry, I try and breath. One judge once told me, that I am calm at all times. I don't let stress affect me and I don't let a highly toxic or fast environment change my attitude. I do this to stay healthy. I've probably lashed out three times in my career. Therapy helps.
Chris Reed Lupus.net Team
It's nice to be able to emphasize with others about struggling with multiple conditions! I wrote this piece about my lupus plus: https://lupus.net/living/overlapping-health-issues/
This is what I included in that post:
Systemic lupus erythematosus
Chronic dry eye
Polycystic ovary syndrome (PCOS)
Gastroesophageal reflux disease (GERD)
Anemia
Chronic hypertension
Myofascial pain syndrome
Temporomandibular joint dysfunction (TMJ)
Overactive bladder
Restless legs syndrome (RLS)
Rosacea
Thygeson’s diseaseIt's tough! -Ava, lupus.net team
