Best Of
New here, and 1st time taking chemo for lupus. What should I expect?
My doctor recently prescribed methotrexate for my lupus flare-up. I'm not sure what to expect and kind of nervous. Anyone taken this or other chemotherapy drugs? Did it help?
ValTu
1 ·
Re: physical activity and leg tightness
100% here! My hamstrings especially have ALWAYS been extemely tight, and IT bands painful to palpate. I needed acupuncture to help release knots in my calves before a massage therapist could even look at them.
Massage and acupuncture did amazing things to help.
Yoga, swimming and Tai Chi as well.
If any of these stop, I definitely feel a difference. I feel my best when I keep up routine. I alternate acupuncture and massage at least once every 6 weeks, and do one form of exercise at least 3 days a week. I try for more but just don't always get there.
The pain doesn't go away, but keeping gently active helps. On days the pain is exceptionally high I use a CBD/THC hybrid cannabis oil and I work through the high. The trick on that one is to start just before the high kicks in, otherwise I have found I just want to binge watch Gilmore Girls on the couch with a bag of Cheetos. Lol
For ankle pain, I found just laying with my legs up the wall for 10 minutes helps, and "drawing the alphabet" with the feet a couple of times. It's a simple exercise from my physiotherapist that seems to help.
Massage and acupuncture did amazing things to help.
Yoga, swimming and Tai Chi as well.
If any of these stop, I definitely feel a difference. I feel my best when I keep up routine. I alternate acupuncture and massage at least once every 6 weeks, and do one form of exercise at least 3 days a week. I try for more but just don't always get there.
The pain doesn't go away, but keeping gently active helps. On days the pain is exceptionally high I use a CBD/THC hybrid cannabis oil and I work through the high. The trick on that one is to start just before the high kicks in, otherwise I have found I just want to binge watch Gilmore Girls on the couch with a bag of Cheetos. Lol
For ankle pain, I found just laying with my legs up the wall for 10 minutes helps, and "drawing the alphabet" with the feet a couple of times. It's a simple exercise from my physiotherapist that seems to help.
keldertron
1 ·
Re: Employment/Symptoms
it I can definitely relate to your symptoms as well. I am a registered nurse that as been living with SLE for the past 15 years . I continue to work, however, after completing my 12 hours shift , I need 2 days or more to recover. Definitely fighting fatigue and insomnia sometimes ., I just stay in bed on my days off. This seems to help.
Angelo
1 ·
Re: Young Adults Living With Lupus
Hi all! I'm 19, I was diagnosed at 14, but they had speculated I had it since the age of 5 and it took them a long time to diagnose. I was put on plaquenil and neurotin(gabapentin), but after major eye damage I got taken off of plaquenil and I took myself off neurotin after falling into remission because of major brain fog and loss of memory. Now my pain is bad, but there's not much anyone can do. I'm finishing up college, and it's hitting me that I have to start looking for jobs and I'm not really sure how to manage that yet with lupus. If anyone is in the same situation, feel free to reach out. Not sure how to manage adulthood and life with lupus quite yet.
briannawelborn
1 ·
Lupus shrinking lung disease activity and exercise difficulty
I am curious if anyone else has been diagnosed with Lupus shrinking lung disease? If so how do you stay positive when it’s difficult to breathe even being on oxygen 24/7? How do you work out when even riding a stationary bike is exhausting? I have back fractures from 18 years non stop steroid use and lots of immunosuppressants. Exercise is difficult!!
leanonme
1 ·
Re: Do I have Lupus
I was diagnosed with SLE in 1983. My biggest issue has always been fatigue, and I've learned to be kind to myself. I learned to say, "Sorry, but I can't" when necessary. I have had a problem with mouth and nose sores, but nothing within the past 5 years. I have never had the redness/rash. Yes, I do take a diuretic for swelling of my hands, but I live in a warm climate and get "normal swelling" on hot days. All I can recommend is finding a GOOD Physician - and "good" means someone who is educated, understanding, compassionate - and sticking with that person. I have been treated by the same Physician since I was diagnosed, and I am doing very, very well. I do have ups and downs, but I think "we" all do. The secret is the medical professionals who treat you. I found that I was not a classic case, my primary symptom being unending fatigue. I wish you well -
JudyTD
3 ·
Do I have Lupus
Hey All- I think I have Lupus but would really appreciate feedback on the beginning stages of experiencing this disease.
Since Oct 2019 I’ve gained nearly 20 lbs of which now providers tell me is more likely swelling retaining fluids. My hands and face are swollen and sore daily, some days I can barely get my rings off and visibly my face changes cause of the swelling. My joints ache daily, esp hips, hands, just over all sore joints. The fatigue I’m experiencing is beyond a normal “long” day. It’s like I’m terribly exhausted. Itchy scalp.
I’ve had gastro issues- dr did colonoscopy and found nothing but yet I get abdominal cramping, constipation, etc. I was just at a urologist for cystoscopy because every urine test I have blood in (not visible) however they found nothing wrong with my bladder and lightly mentioned might be my kidneys. I get mouth canker sores. Also I get dizzy all the time, feel like I’m gonna pass out. Lose feeling in my hands at night while sleeping (may be poor circulation?).
I have redness in my My face- however only appears at night or after a day in the sun. None of these things happened to me prior to Oct 2019. Does any of this sound familiar. Every time to look at symptoms online or ask friends that work in the medical field each of them says I need checked for lupus ASAP.
I’d love to hear anyone’s perspective and response. Thank you so very much.
lbsteins
1 ·
How many years can we live with lupus?
I’m diagnosed from 2005 with lupus I take one year cortisone and plaquenil which I’m still taking but I have no symptoms since 2006. September 2019 I birth a wonderful girl and now I have all the time the anxiety that I will die because I am sick and she needs me and I am loosing it. I am well without symptoms but I’m always afraid that I am sick too long time and it will get revenge now that I have to be well.help me.ihave so anxiety that my hands pain and I can’t have nice time with by baby.
vivi
1 ·
Re: Lupus and or connective tissue disease
Thanks for the reply. The only issue I had is the Rheumatologist made no diagnosis and my PCP made a diagnosis over her. The Rheumatologists non dx was made on tests, x-rays, and examinations of me, the PCP only looked at the ANA results and disregarded the other blood tests she ordered! She came in the room at first and made a declarative statement that I had Lupus! I reminded her that's prevalent in women, not men! Then based on her only observation of me with no examination claimed I had a CTD.
blunt12
1 ·
Re: Lupus and or connective tissue disease
Every Rheumatologist is different, but I suspect the diagnosis of CTD is based on combination of symptoms and test results. I’m no expert, but my daughter has CTD, and we’ve researched everything we could about the disease and asked a million questions. It’s my understanding that it means that you may have a combination of three or more rheumatoid diseases that could include RA, SLE, Scleroderma, Sjogrens, etc. Your doctor may want to monitor your symptoms before making a specific diagnosis and starting treatment. It has taken years for some of my daughters symptoms to manifest themselves. For many of these diseases, the initial treatment may be the same, so should your symptoms worsen, your doctor may start treatment without knowing exactly which rheumatoid disease is causing problems. Once you have a specific diagnosis, then treatment can be adjusted accordingly. Of course there is no one size fits all treatment, so it may take time to figure out what works or doesn’t work for “you”. Only you know how you feel, so it’s important that you communicate any symptoms you have to your doctor. I recommend keeping a medical journal and take it with you to every appointment. Take pictures of any swelling, redness, rashes, etc. as your symptoms may wax and wane and might not be visible by the time you can get in to see your doctor. Hang in there and good luck!
lsasuvivor
1 ·
