Concise, practical video from the Sjogren's Foundation
In this short video you will find out:
- the causes of fatigue in autoimmune disorders such as Sjogren's. It also applies to systemic lupus erythematosus
- the different types of fatigue
- practical advice on how to approach and treat fatigue
- Download my free Fatigue Management and Sleep Hygiene Handouts here:
SHARE with anyone who may suffer from fatigue
COMMENT above, please share how you deal with fatigue. Are you a spoonie?
World-wide shortage of rheumatologists= getting worse
The worldwide shortage of rheumatologists is getting worse: hold on to your rheumatologist!
If you have difficulty getting in to see a rheumatologist, there are good reasons why.
In 2015, there was a shortage of rheumatologists throughout the US. The American College of Rheumatology (ACR) counted 6,013 rheumatology care providers. 4,997 were full-time rheumatologists, 598 worked part-time, and the other 418 were nurse practitioners and physician assistants specializing in rheumatology. This was 13% fewer rheumatologists than needed by the population, according to the ACR. Since then, the numbers have continued to decrease. Many rheumatologists are retiring, and not enough new ones are entering the specialty. In 2020, 100 doctors who wanted to get into rheumatology training programs could not do so because there were not enough training slots.
By the year 2030, the total number of healthcare providers specializing in rheumatology in the US is predicted to drop from 6,013 to 4,133 nationwide. There will also be a greater need for rheumatologists. The number of older people with arthritis (the baby boomers) will be much higher. It is estimated that there will be only half the number of rheumatology healthcare providers that will be needed to care for rheumatologic patients, such as those with SLE.
Another problem is that many areas of the US have few to no rheumatologists. Many patients have to travel hundreds of miles to see the closest one. 21% of rheumatologists are in the Northeast while only 4% are in the Southwest, and this imbalance is predicted to get worse. There are much fewer people in the population per rheumatologist in the Northeast compared to the Southwest.
A 2019 US study showed that more than 60% of US patients had to wait more than a month to get a new patient appointment with a rheumatologist. More than a quarter of patients had to wait more than 2 months.
It’s much worse for children with rheumatic diseases (such as pediatric SLE). Only 1 of 4 children with arthritis can see a pediatric rheumatologist. Those fortunate to see one have an average of an hour’s drive. Nine states have no pediatric rheumatologists, and six states have only one.
A 2019 United Kingdom study showed that patients waited for an average of over 6 months after the onset of rheumatologic symptoms before being able to see a rheumatologist. So this is not just a US problem.
American College of Rheumatology Committee on Rheumatology Training and Workforce Issues, FitzGerald JD, Battistone M, Brown CR Jr, Cannella AC, Chakravarty E, Gelber AC, Lozada CJ, Punaro M, Slusher B, Abelson A, Elashoff DA, Benford L. Regional distribution of adult rheumatologists. Arthritis Rheum. 2013 Dec;65(12):3017-25. doi: 10.1002/art.38167. PMID: 24284967.
Battafarano DF, Ditmyer M, Bolster MB, Fitzgerald JD, Deal C, Bass AR, Molina R, Erickson AR, Hausmann JS, Klein-Gitelman M, Imundo LF, Smith BJ, Jones K, Greene K, Monrad SU. 2015 American College of Rheumatology Workforce Study: Supply and Demand Projections of Adult Rheumatology Workforce, 2015-2030. Arthritis Care Res (Hoboken). 2018 Apr;70(4):617-626. doi: 10.1002/acr.23518. PMID: 29400009.
Borenstein D. Hug your rheumatologist: the shortage is coming. The Arthritis Connection Summer 2020. Retrieved on 4/11/21 at https://www.thearthritisconnection.com/rheumatoid-arthritis/hug-your-rheumatologist-the-shortage-is-coming
Should lupus patients use medical marijuana?
Medical Marijuana (Cannabis, Cannabinoids, THC, CBD and lupus)
With the increasing popularity and availability of cannabis and CBD, many lupus patients are asking, "How about CBD and lupus?"
Marijuana (cannabis) and its active components (THC and CBD) has become more popular for medical treatments. As of this writing (April 2021), 42 states in the US allow the use of medical marijuana, and 11 states (and the District of Columbia) have fully legalized its use recreationally. Many of my patients ask about using it, so I think it is important to go over some important information about it.
My goal is to present the facts based on scientific evidence without bias.
Cannabinoids are the active compounds of the cannabis plant. There are over 140 different cannabis-derived cannabinoids known, and each acts differently in the body. The 2 most studied and well-known are cannabidiol (CBD) and tetrahydrocannabinol (THC). THC is the cannabinoid responsible for the “high,” intoxicating effects with recreational users. CBD does not make people “high.”
There is no evidence that it is unsafe in lupus: read on!
Why do people with lupus think it is unsafe to take melatonin?
It is because there are outdated websites and patient education pages that state this. It even occurs on highly-acclaimed sites such as the Mayo Clinic.
How can the Mayo Clinic be wrong?
Most likely: there are tons of patient education pages that were produced a long time ago.
There is probably no one who polices and up dates them.
Certainly the doctors are way too busy to do this: they are taking care of patients and doing research.
Theoretically, melatonin may improve the immune system in lupus
and other autoimmune diseases
- One problem in lupus is that there are lower numbers of important white blood cells called Tregs (regulatory T-cells).
- Tregs help to normalize the immune system and prevent overactivity.
- With less Tregs, bad B-cells that make dangerous lupus autoantibodies (such as anti-dsDNA) can live a very long time (and even forever, "immortal").
- Melatonin does effect the immune system. One of the things it can do is increase these important Tregs that could be helpful in lupus and other autoimmune diseases
- The 2013 research article referenced below by Lin GJ et al and the 2019 article by Zhao et al go into detail about this
What happens to lupus mice when they are given melatonin
- When melatonin is given to female mice that are prone to getting lupus, it prevents them from getting lupus!
- This was shown in a 2010 study by Zou LL et al and another in 2008 by Jimenez-Caliani AJ et al (referenced below)
How about humans?
- There are no studies of using melatonin in people with lupus.
- This is a huge reason why it is incorrect to tell people with lupus not to use melatonin. There is no evidence to support that recommendation.
- However, there is a study in people with rheumatoid arthritis (a related autoimmune disease).
- Melatonin did NOT worsen rheumatoid arthritis in these patients (Maestroni et al, referenced below)
I do not ask my patients with lupus to avoid melatonin.
There is actually more evidence that it may be beneficial rather than harmful.
Lupus patient education websites should remove their recommendations to avoid melatonin.
These sites and pages are outdated.
A gift for Christmas 2020, since I'm a 90-Day Fiancé fan. Angela wishes me a Merry Christmas and mentions my book. She looks great since her weight loss surgery and she must still be with Michael of Nigeria since she mentions him as well. Merry Christmas to you, Angela!
Simple, effective strategies to improve your sleep
Tips on better sleep
We call this important list "sleep hygiene" techniques.
How to use:
Sit down, read the list, use a yellow highlighter on anything you are not doing regularly.
Work faithfully on incorporating every single thing into your life.
If you then still have trouble sleeping, talk to your doctor. Ask if you should get a sleep study to figure out if you have a treatable sleep disorder
Get other advice for living better with lupus from "The Lupus Secrets"
Thank you Kelli of "More than Lupus" for posting the Ask Dr. T question
Sleep Hygiene Techniques
- Maintain a regular sleep schedule; get up and go to bed the same time daily even on non-work days and holidays.
- Reduce stress in your life.
- Get exposure to light first thing in the morning to set your biological clock. Consider using a non-UV source of light exposure such as the Philips goLITE or the Miroco non-UV light.
- Exercise daily; mornings and afternoons are best. Don’t exercise right before bedtime.
- Avoid naps late in the afternoon or evening.
- Finish eating two to three hours before bed; a light snack is fine, but avoid foods containing sugar as it can stimulate the mind and interfere with falling asleep.
- Limit fluids before bed to keep from getting up to urinate throughout the night.
- Avoid caffeine six hours before bed.
- Do not smoke; if you do, don’t smoke for two hours before bed; nicotine is a stimulant.
- Avoid alcohol two to five hours before bed; alcohol disrupts the sleep cycle.
- Avoid medicines that are stimulating (ask your doctor).
- Avoid stimulating mind activities for a few hours before bed (reading technical articles, listing tasks to do, trouble-shooting, paying bills, etc.).
- Have a hot bath one to two hours before bed; it raises your body temperature and you will get sleepy as your temperature decreases again afterward.
- Keep indoor lighting low for a few hours before bed.
- Establish a regular, relaxing bedtime regimen (aroma therapy, drink warm milk, read, listen to soft music, meditate, pray, do relaxation/breathing exercises).
- Ensure your sleeping environment is quiet and comfortable (comfortable mattress and pillows; white noise like a fan; pleasant, light smells).
- If pets ever wake you, keep them outside of the bedroom.
- Use the bedroom only for sleep and sex; never eat, read, or watch TV in bed.
- Never keep a TV, computer, or work materials in your bedroom.
- Go to bed only when sleepy.
- If you can’t go to sleep within fifteen to twenty minutes in bed, go to another room and read something boring under low light, meditate, pray, listen to soft music, or do relaxation/breathing exercises until sleepy.
- If you have dry mouth problems, use a mouth lubricant such as Biotene Mouth Spray before you go to bed.
Come join us NOV 21 on Zoom
Lupus Seminar ...
No airplane flight!
No expensive eating out!
Sit down in your jammies with a cup of coffee, type any questions in the comments box during the meeting, share your experiences with other lupus patients and enjoy
Don Thomas, MD, author of "The Lupus Encyclopedia" and "The Lupus Secrets"
Lupus by Shanelle Gabrielle
"I still have a purpose ... A reason to smile ... I'm still living my life with no regrets."
You think you own me
Squeezed my life in your palms
Taken over my body
You think you are me
You think because
You've hijacked this vessel that you're captain
You think you can get away with mutiny
I'm still the same me
The same beautiful butterfly floating on the breeze
I ain't scared to wrestle the wind
To battle Raynauds thorns
Not afraid to diss this disease
To find peace
Be at ease with this disease
I miss my old life but I'm fashioning a new one with this disease
In no way am I saying this is easy
The way my cells fight themselves
That my chest being in a cage of pleurisy
That my scalp cries strands of my hair
That the pain in my knees which interfere with my prayers
Make it hard to sometimes find the joy in life
Makes the sun less bright
But I know no matter what
There's nothing that'll take away my fight
When it seems to make my day feel like night
I'll still reach for a star
When it seems my world spins left
I've resolved to force it to revolve right
And even if my limbs refuse to move
My spirit will still dance
Every day I'm going to
Choose to enhance this universe with my presence
In any way I can
Lupus is not me
But it's the spark that created a flame
My disease is not me
But it's the source of my vanity
Lupus you can't damage me
Because my body isn't all I possess
I still have a purpose
A reason to smile
I'm still living my life with no regrets.
Copyright Shanelle Gabriel
Share your comments below. Do you have a poem or other artistic work about lupus that you would like to share?
Note that Dr. Thomas' posts are for informational purposes only, and are not meant to be specific medical advice for individuals. Always seek the advice of your healthcare provider with any questions regarding your own medical situation.
DONALD THOMAS, MD