my mom has lupus and fibromyalgia?
Topic: my mom has lupus and fibromyalgia?
July 18, 2019 / By Jessie Question:
We have known for quite some time (years) she seems to be suffering more and more each year anyone have any suggestions for how she can cope ie lifestyle changes etc all suggestions are welcome she sees a pain management specialist and is on several meds also she does not have her spleen it was removed when ruptured in a car accident so her immunities are even lower!
she has systematic lupus sorry I know there are different forms
she used to smoke weed advised by physician but the lupus has somewhat affected her brain or it could be the meds but she was hallucinating a bit a she wants to try to go natural I'm just learning about the symptoms of lupus there are over 100 and hallucinations are one
Best Answers: my mom has lupus and fibromyalgia?
Flurry | 9 days ago
Hi, I am Chris. I have a pretty severe case of Lupus, and have had fibro in the past, but somehow got it under control after many years of trying, without fancy products that wouldnt work, just some basic things and sleep, and water exsiceses, like another answerer mentioned. I live in so CA and have a pool, but its been 107 out and cant go in the sun, but when Im not exausted from the days heat, I go in and do gental (oh I cant spell) exersises. However the arthritis foundation has programs (ive done their indoor ones, where they do arthritis exersices, and they sure help). Many are free. Ill see if I can find the exact link. Also if you have a YMCA many have pools, and have sliding scales for incomes, she can go in there. For 2 yrs I went to a pain specialist and pain psycologist, they did wonders, medicare covered the pain psycologist.
Sometimes the meds used to help the Lupus can hurt the fibro, like if shes on prednison, so you have to find a way to counteract it, because of bone weakining, and muscle fatigue.
essential fatty acids like omegas 3 and 6's are great and inexpensive, olive oil, coconut oil. salmon, dark green leafy veggies. all safe for lupus/fibro paitents. BUT ASK HER DOCTOR/RHUEMOTOLOGIST FIRST. IN CASE SHE HAS A Seafood ALLERGY!!! If she does Flaxseed products are great, same omegas....
If she dosnt sleep well, and most fibro paitents do not, get her some good sleeping aids from a doctor. dont let her take long naps, it will just mess with her night sleep, and her stage 4 sleep, which comes right after stage 3 when your in the dream cycle. stage four is actually the deep restoritive sleep that fibro paitents dont get. Allow or try to get her to take maybe 1-2 20 minute naps a day.
I think you both may need a coping stratagy group that is face to face in your area, and maybe one online. I co-own a free online yahoo groups Lupus/fibro autoimmune one. we are a mixed bag of autoimmune nuts. we provide research, nutrtion, spiritual needs if you like, laughs, and a family like group. there are a few of us that do all the research or write articles from books we have, and condence in our own words what we read into several pages from 100's. We have about 60 memebers but there are close to 4,000 posts on average a month. we pull professional articles from web md credit given of course, we provide web site links so you dont have to look, and light entertainment, we have some clowns.
Outlook is important, our first instict is to look at what we lost. But many dont see what we may have gained, or at the least the fact that we still are here, and have at least 1 thing to say thanks for.
This is from our group files. I hope it offers you and your mom some insight:
Patients w/ fibromyalgia often experience:
Chronic widespread body pain in the neck, shoulders,
back, arms and legs
Muscle tenderness, soreness and flu-like aching
Poor sleep, stiffness and fatigue
Dull pain in muscles, tendons and ligaments
Fibromyalgia is painful. It can't be detected through
a blood test. Or an X-ray. But your dr may be able to
perform a "tender point" exam to make a diagnosis. It
is important to see a dr because many of its symptoms
are similar to other conditions. Such as arthritis.
Ten things you should know about fibromyalgia
1. Fibro is one of the most common chronic widespread
types of pain in the U.S. The condition affects over 6
2. Fibro pain is widespread and persistent. There is often
muscle tenderness. Plus soreness or burning pain. This can
make it hard to sleep. Sometimes, patients also have stiffness
in their muscles or flu-like aching.
3. Fibro is thought to result fr neurological changes in how
a patient perceives pain.
4. To be diagnosed w/ fibro, patients must have widespread pain
lasting @ least 3 months. Plus pain in @ least 11 of 18 parts of
the body known as "tender points." (According to the American
College of Rheumatology.)
5. Women are much more likely to report having fibro then men.
80% to 90% of those diagnosed are women. Although both men and
women can suffer from fibro.
6. The outlook for ppl w/ fibro has never been better. Exercise,
diet and rest can help manage this condition. So can counseling
7. Serveral types of healthcare providers are available to help
manage fibro. These include rheumatologists, primary care physicians,
nurse practitioners, neurologists, psychiatrists, physiatrists and
8. Fibro places large financial costs on patients and society.
It may cause lost work days. And lost income and disability payments.
9. Although fibro is not a psychological condition, it can impact
mood and cause distress. In that way, it is similar to other
chronic pain conditions. However, the majority of sufferers
do not have mood-related disorders.
10. If you think you may have fibro, you are not alone. Talk
to your doctor. Or contact the National Fibromyalgia Association
at 714-921-0150 (CA phone number). To visit online,
go to www.fmaware.org
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Originally Answered: Are you familiar with Lupus or Fibromyalgia?
I have fibro, yes flu like symptoms some days it even hurts just to get a hug. If I don't pace myself and take breaks I suffer heavily for a few days after. Pain meds do not work for fibro, lyrica and other muscle relaxer type drugs seem to help. There are pressure points that a doctor can check I think its like 18 different points and let me tell you if someone touches these points you want to go through the roof. I am also very drug sensitive, and now even literally allergic to the cold weather.
Go ahead to the rheumatologist probably a little arthritis going on due to your age, after that go to a pain or spine and pain clinic.
PS low impact exercise ie swimming made me feel better and getting better sleep helps some too.. But pacing yourself when your doing activities is a BIG FACTOR in how you will feel a little later.. Its tough with a type A personality that just wants to get it done now.
So much to put here and so little time, but yes stress and a bunch of other factors can trigger it too!
Below is a tip for coping page.. Best of luck
Fibromyalgia and Lupus or Rheumatoid Arthritis tend to run together. Lupus and RA are autoimmune conditions and the Doc can take a sample of blood and run a autoimmune screen to see if you have any auto-antibodies. Now while many healthy people have auto-antibodies, their is a line if you like. Below that line, on that line, or slightly above that line and they will probably say NO, but will keep any eye on you. Over the line by a certain margin and they will start to undertake other tests to rule in or rule out different forms of Arthritis. As someone who erupted in Psoriasis at 16, had a red hot swollen finger at 21, followed by a thumb, neck, back pain, by the time my toe rebelled they decided to do this test and I was told at 29 that I have Rheumatoid Arthritis! I then saw a Rheumatologist four years later who diagnosed Psoriatic Arthritis. It was only last year, some 20 years later did they re-diagnose Rheumatoid Arthritis, with mild Psoriatic Arthritis and small element of Lupus. Unfortunately, RA needs to be caught EARLY, as the drugs used have a better outcome if used early on in the disease process. They have a 'window' whereupon the drugs will stop deformities, but past that window and the RA becomes resistant to drugs! So 20 years, I missed the window and at 49, well if I make 50, it will be a serious celebration. I am now 40% at higher risk of heart attack and cancer! Therefore my advise, if you think, even if it is just 1% that you might have Arthritis, see a Doc and get them to investigate. I would hate to think that my life has been in vain! I like to think that my job is to forewarn people no matter how young, or old, that Arthritis can be a seious health condition and the sooner you rule it in, or out, the better off you will be in the long run. That is why I detest people saying I have Arthritis, because they have a few pains, yet have never seen a Doc to have any tests, let alone get a diagnosis. So please do this not for me but yourself. See the Doc get the test and take it from their. I have two older Brother and one older Sister, they are healthy. My Parents and Grandparents never had Psoriasis or Arthritis, yet I do! Good Luck
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I have heard that swimming has done wonders for fibromyalgia. She can try yoga and meditation. This truly does work. Sunshine and fresh air help as well. She should follow her instincts and listen to her body. If she is sun sensitive due to the lupus she should wear a hat, sun glasses, and stay covered, but a nice walk no matter how slow or how short can do a lot for ones spirit and helps to fight the fatigue. Yoga is simple stretching and breathing properly. She should eat healthy since her body is fighting disease. And it may help if she had a support group that had other people with like illnesses so she doesn't feel alone in this.
Staying prayerful does a lot as well. Mind, body, and spirit all need to be well cared for. During the winter months some people find comfort in a natural light lamp to help them get natural light to fight depression.
There are many diets she can follow, but if she takes her meds, inquires exercise into her daily routine, and eats a well balanced healthy diet she should feel better. And if she adopts prayer and meditation she will be well on her way to a healthier lifestyle.
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I have fibromyalgia and have found many things that have helped me to have a better life. If your mom is serious about "natural" type treatments , then maybe she would be interested in trying D Ribose for her fibro? It helps about 69 % of the fibro/cfs patients who try it.
I found that cleaning up my diet helped ALOT. Its worth the effort to really give these things a try. There are also several vitamins, minerals and other supplements that help .
Finally the last thing may sound too easy , too far out there but it really does help with fibromyalgia. Its also the easiest one to do. Thats changing teh way she thinks. you see when we think negative thoughts our bodies are flooded with naturally occuring "chemicals" that our bodies make to prepare us for the fight or flight cycle. Those "chemicals " or hormones add to our pain levels. When you have negative thoughts all the time( anger, sadness, hopelessness, worrying) your body gets stuck in the fight or flight cycle which leads to more pain. Its a viscious cycle. Your mom needs to stop all the negative thoughts in their tracks. It takes practice but it truly is the one thing your mom CAN control. Her life will improve, her health will improve and she will feel better.
There are so many things that can help, these are not the only ones but they are a start. She has alot to deal with but she can have a better life.
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There is hope for lupus. Have you consider giving her food supplement on top of medication? I know of several people who have resorted to taking food supplement and now their blood chemistry count ok except for the marks. I myself am also taking this food supplement and saw my immune system up and simplified my lifestyle. you can check www.reliv.com. for the heatlh stories and complete discussion of their products and consult your mom's physician too
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Sounds like a perfect candidate for medical marijuana. My mom-in-law has the same thing and it has really helped her pain. She kept getting addicted to the pain meds or they stopped working or they made her sick or they knocked her out so bad she might as well have been brain dead. The weed (as much as she is embarrassed to smoke it) does what the pain meds couldn't even begin to do. It stops the pain, doesn't knock her out, doesn't make her sick and she can function normally.
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Try giving her anti oxidant lots and lots of it (of course under supervision of a health professional) try taking relaxing walks every day. The best thing is to find a group of people that have the same problems and have her go to the meetings weekly to hear what they have done to help themselves.Good luck!
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