Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

Now getting round to reading a thread or two.

My thread of food issues will help but...
No guarantees...

Is this a joke?

I searched for a Lupus Check-In thread. I did not see a thread but I am not sure if it’s worth making a thread. It seems a lot of people on this forum have Fibromyalgia, I’m not sure about Lupus.
I wonder if a lot of people have several unpreventable autoimmune diseases. I have several.

@Cocosurviving, it seems to take a long time for a rheumatologist to reach a diagnosis of Lupus. In the meantime, a patient can get a "smorgasbord" of ailments, as you seem to have.

My wife had Epstein-Barr as a teenager. After the baby was born and then diagnosed with autism a few years later, her health started to unravel. Sjogrens, Hashimotos, transverse myelitis (TM), Hughes Syndrome, Connective Tissue disorder, tendonitis, and so on, all would appear and then fade out eventually. Except, it was the TM that damaged her spinal cord and left her overly sensitized to pain.

Lately she gets sudden onset of fatigue and depression after she goes out into bright sunlight. I've heard that folks with Lupus cannot tolerate the sun. At this point it's too exhausting and expensive to get all the blood tests that are required for the diagnosis.

Thank you for sharing. I have a follow-up appointment with my rheumatologist in May, for now I have one medication aimed at reducing inflammation. Me and my teenage son take walks in the evening. I make sure to apply sunscreen in the morning, and reapply in the evening, in addition to applying off.

My pain has reduced and I make sure to regularly stretch. I also drink a lot of water. I struggle with avoiding sweets. I hope things get better for your wife.

Thank you and good luck! I hope your rheumatologist has good news for you!

I came across this topic on another thread: Fibromyalgia misconceptions and myths.

My experience:
I have tender points, experience muscular knots and muscle spams etc.
I have a hard time taking written notes and usually have to type out my notes.
I’ve tried mechanical pencils and added cushions to my ink pens. I plan to purchase a keyboard for my iPad to make typing easier.

As far as meds and treatments:

•Early on I tried a steroid injection once and it hurt way too much. I also know long term use can result in bone deterioration.

•I tried Flexeril it was too strong and lingered. My rheumatologist then recommended CBD and did a good job of creating a titration schedule but it didn’t help.

•Next I was recommended (same provider) medical cannabis. I prefer gummies and I could sleep through the night like a baby.

•I knew early on that medication and/or medical cannabis would not be my only solutions. My only health insurance is Medicare, which does not cover acupuncture or chiropractor visits (for Fibromyalgia). Luckily in my area massages are not expensive. We have a decent amount of massage businesses to select from.

•I also have a YMCA membership and find deep tissue yoga helpful for my overall health, mental clarity and to loose my stiff/achy joints.

I read a lot of articles from national fibromyalgia and arthritis organizations. My Mighty has good articles too and I like that they publish articles written by individuals with disabilities and chronic illnesses.

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Our insurance doesn't cover acupuncture, either. But my wife's naturopathic doctor administers it as part of an office visit.

One of your posts mentions that pain medication is a possible cause of Chronic Idiopathic Urticaria. I wonder if that's the case with my wife, although she has itchy skin ulcers, not hives.

Her pain management doctor suggested a turmeric supplement. And our local grocery stores are offering whole, fresh turmeric, so we've been adding it to soups and stir fry dishes. Turmeric is supposed to be a powerful anti-inflammatory food. Fresh cracked black pepper is supposed to help with absorption. It's hard to tell if it helps, though.

I’m glad your wife has a naturopathic doctor. We have several functional health doctors, but they do not accept health insurance.

RE: Chronic Idiopathic Urticaria

I initially experienced swelling from infancy through high school and spent a lot of time hospitalized and without answers.

Nothing changed after high school except that I moved out of state. Thirteen years later, I had surgery, and everything went wrong. I returned to my birth state, and the other shoe dropped. Lol. I began experiencing chronic urticaria, formally called autoimmune urticaria, around 2018 after moving back to my place of birth.

I went through a lot of ups and downs trying to figure out the correct diagnosis. I began keeping a journal of everything I ate, any medications I took, changes in weather, etc. I eventually created a symptom tracker chart to make things more efficient. I was experiencing what I now know is Hereditary Angioedema (HAE), which is a rare disease.

Things turned around for me after my immunologist hired a nurse practitioner. She happened to be on call during a flare I experienced early one morning. I was scared and crying emotionally. One of my eyes was swollen shut, and I had a huge knot under that eye. It turns out the NP also has HAE. I immediately had the necessary labs, and my symptom tracker charts (6-7 months of charting) were accepted as evidence. I also had lots of photos and emergency room visits.

I have an official diagnosis of Hereditary Angioedema with normal C-1. Last fall, my experience with chronic urticaria changed. When I experience a chronic urticaria flare, within 1-2 hours, I immediately have a HAE attack. HAE attacks can become severe and cause anaphylaxis.

There are more medications on the market for HAE compared to 20 years ago. All the HAE specialty medications require injections, some intravenous and others subcutaneous. I administer my preventative every other week subcutaneously. My emergency medication and abortive must be administered intravenously.

I still avoid pain medications and prefer medicinals. It's funny you mentioned turmeric. Our weather is changing to cool temperatures and rain. I sliced fresh lemon peels and fresh turmeric (sometimes fresh ginger), then added them to the water and boiled them. I pour the boiled water into my tea infuser. I make a cup of herbal tea and add raw honey. I have a nice collection of herbal teas. I have also heard good things about cracked black pepper.

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I live with a rare disease and multiple (unpreventable) autoimmune diseases and decided to be proactive.

Why Nursing—My Why

I took initiative and began attending trainings, workshops, education events, and webinars. I have had many experiences of being ignored, experiencing medical racism, a lack of continuity of care, and misogyny.

I'm not interested in attempting to change a system that has fought hard to normalize its harmful existence.

My goal is to help create another lane for marginalized BIPOC, Two-Spirit, and Indigenous people. I want to help create care in marginalized communities by marginalized providers.

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“HAE prevention plan: Tips for stopping an attack before it happens”

“Hereditary angioedema (HAE) is a rare genetic disorder that can cause swelling attacks in the limbs, face, upper airways, abdomen, and genitalia.

HAE can occur anywhere on the body. The most common areas are the lips, hands, feet, and the skin around the eyes. It also may occur in the mucosal linings of the respiratory and digestive tracts.

Swelling attacks can happen regularly, often without a known HAE trigger. HAE attacks can be prompted by trauma; viral infections; stress; medical and dental procedures, including surgery and having a tooth pulled; hormonal fluctuations; allergens; and physical activity.

HAE attack symptoms include swollen areas of skin that may be smooth or raised. Symptoms can vary from person to person or even from attack to attack in the same person, and can include non-swelling symptoms.

HAE attack treatment includes learning what the triggers are, which are individual to each person, and short- and long-term preventive treatment with medications. With the right medical care, a person may be symptom-free for years.

In some cases, severe swelling may affect the intestines, causing nausea and vomiting, along with intense pain. Some people may have swelling in the mouth and throat, making it difficult to swallow, speak, and breathe. Breathing problems can quickly become life-threatening emergencies and require immediate medical treatment.

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HAE prevention plan: Tips for stopping an attack before it happens
Last updated Oct. 2, 2023, by Susie Strachan
Fact-checked by Patricia Silva, PhD
What causes an HAE attack?Attack triggersTips for avoiding triggersPreventive treatments

Hereditary angioedema (HAE) is a rare genetic disorder that can cause swelling attacks in the limbs, face, upper airways, abdomen, and genitalia.

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HAE can occur anywhere on the body. The most common areas are the lips, hands, feet, and the skin around the eyes. It also may occur in the mucosal linings of the respiratory and digestive tracts.

Swelling attacks can happen regularly, often without a known HAE trigger. HAE attacks can be prompted by trauma; viral infections; stress; medical and dental procedures, including surgery and having a tooth pulled; hormonal fluctuations; allergens; and physical activity.

HAE attack symptoms include swollen areas of skin that may be smooth or raised. Symptoms can vary from person to person or even from attack to attack in the same person, and can include non-swelling symptoms.

HAE attack treatment includes learning what the triggers are, which are individual to each person, and short- and long-term preventive treatment with medications. With the right medical care, a person may be symptom-free for years.

In some cases, severe swelling may affect the intestines, causing nausea and vomiting, along with intense pain. Some people may have swelling in the mouth and throat, making it difficult to swallow, speak, and breathe. Breathing problems can quickly become life-threatening emergencies and require immediate medical treatment.

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What causes an HAE attack?
For people living with HAE, swelling can partly be caused by an inherited genetic mutation.

HAE attacks are triggered by an overproduction of a protein called bradykinin, which increases blood vessel leakiness and causes edema. Swelling occurs when bradykinin is activated in the deep layers of the skin, causing fluid to flow from the bloodstream into nearby tissues.

There are three types of HAE:

Types 1 and 2 are caused by mutations in the SERPING1 gene, which is involved in making a type of protein called C1-inhibitor. When there isn’t enough of this protein, bradykinin levels can get too high and cause an attack.

Type 3 HAE is caused by mutations in genes other than SERPING1, including the F12 gene. These mutations can trigger an inflammatory response and subsequently make bradykinin levels get too high and lead to an attack.

HAE attack triggers
Hereditary angioedema triggers include trauma, viral infections, stress, and medical or dental procedures. Other triggers are allergens, hormonal fluctuations, and repetitive physical activities.

Allergens
Exposure to common foods or environmental factors can trigger HAE attacks. A small study reported foods including milk, apple, pineapple, onion, garlic, fish, citrus fruits, strawberries, and cheese could be possible triggers. HAE attacks can seem similar to other kinds of allergic reactions.

Hormonal fluctuations
Changes in hormone levels also can trigger hereditary angioedema attacks.

Puberty can cause HAE symptoms to become more frequent and severe, particularly for girls.

Hormonal fluctuations during menstruation, menopause, pregnancy, and breastfeeding can lead to more frequent attacks, according to the International WAO-EAACI guideline for the management of HAE.

Birth control pills, which contain artificial female hormones, can trigger attacks.

Pregnant women should be monitored by an HAE expert, in addition to their obstetrician-gynecologist. With good management of the disease, most women will have a successful pregnancy and delivery.

Physical activities
Doing repetitive activities that put pressure on one part of the body for a long period of time may trigger swelling attacks in people with HAE. This could include gripping a tennis racket, typing, or tightly holding a tool such as a hammer.

Physical trauma, illness, and medication
Physical trauma, including from surgery or an accident, can cause an HAE attack in the affected area of the body.

Infections are a common trigger for HAE attacks in children and adults, so steps should be taken to limit exposure to viruses and to stay up to date with recommended vaccinations.

High blood pressure medications containing ACE inhibitors may increase the frequency or start of HAE attacks and should be avoided.

Emotional stress
A work-life imbalance, family problems, and the loss of a loved one can be some sources of emotional stress. People living with HAE also may find having unexpected, disfiguring, and painful attacks stressful.

Stress can lead to anxiety and depression, and affect quality of life.

Surgery
Procedures associated with the upper digestive tract, such as surgery or dental surgery, can cause swelling at the site of the surgery, usually within 48 hours.

For example, having a tooth removed causes swelling in more than one-third of people with HAE if preventive treatment is not provided before the procedure.”

Hereditary angioedema triggers: Tips for stopping an HAE attack | Angioedema News

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You're amazing; well done! I truly hope you achieve your goal!

And thank you for the info on HAE. I've never heard of it.

This might sound weird, but I've wondered if inflammation is related to tidal action. My idea is that since the moon can greatly influence Earth's bodies of water, it can affect our body of water.

Did any of your tracking involve tides or moon phases?

Greetings! I believe this is possible. I never thought to track moon phases; however, I do track weather cycles and changes. When temperatures drastically change, I experience a flare-up. When temperatures are very hot, humid, or cold, I also experience a flare-up. Certain foods (specifically processed foods and commercial red meats) also cause flare-ups in addition to lack of sleep.

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Last week, I signed up for Ticket-to-Work through the Social Security Administration. My youngest son turns 18 this month, and my income will change. I need to at least work part-time. I am happy to report that my new HAE injection treatments seem to be working. My HAE attacks have slowed down a lot. I received hospital bills from my last few HAE attacks. Working will help me get them paid off.

I have an assigned vocational case manager. We had a phone conversation this week and discussed resumes. I have been dealing with a lot of anxiety over how to explain the gap in my employment history. My case manager explained that I should list volunteer work and explain during interviews that I took time off to raise a family. My kids are all grown, and I am returning to work. Being disabled is very hard, and I understand that it varies greatly from person to person, depending on the type of disability (disabilities) in addition to the severity.

I have a very close relationship with my youngest son, and that’s mainly because I started receiving SSDI when he was in fourth grade. He’s a senior in high school, and I still take him to school and pick him up. I have been able to attend all his school events, band concerts, band competitions, open house events, and parent-teacher conferences. I participated in school carnivals, bake sales, and helped chaperone events. I dropped him off and picked up him and his classmates.

I found a few articles that discuss returning to the workforce. I hope others find the articles helpful too.

•Stay-at-home-mom valuable transferable skills.

Just a moment...

•Finding a job/reentering the workforce after being a stay-at-home-mom.

Just a moment...

•Finding a job/reentering the workforce after a long absence.

Just a moment...

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Over the last two weeks, I have tried to donate blood to the Red Cross twice. Each time, my iron was too low. I reached out to my primary physician to report and explain other symptoms. I was struggling with fatigue and procrastination, and I could feel myself slipping into depression. My primary physician ordered labs and said low iron could trigger my depression. I’ve been eating foods containing iron and hope to not need another vitamin or supplement. I learned that iron is not part of the usual autoimmune disease lab panel. I don’t understand why, since vitamin deficiency is very common among people who have immune diseases, such as myself. The standard lab panel checks for vitamin deficiencies except iron deficiency.

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Dear @Cocosurviving, I hope you are well; we haven't heard from you in a while.
Have you been able to increase your iron level?

Our weather on Thursday and Friday was hot (mid 80s F) and humid (~90% RH). But then on Friday night, temperatures dropped into the 50s, and Saturday was refreshingly cool, crisp and dry.

My wife's misery went away so suddenly on Saturday morning. It's been so long since I've heard her say that she felt good, but she did so yesterday.

And we give our dog his pain med on rainy days.

It makes me think that she should have a pressurized suit that would simulate the high barometric pressure of a nice day.

Greetings, Thank you for checking-in on me. In June 2024, I signed up for Ticket-to-Work through SSA, and started working part-time.

In Aug 2024, I started working full-time with the goal of gaining access to private health insurance. I signed up for private health insurance this month, and my plan is much better than Medicare. My specialist copays cost half the price!!!!

I never thought that having a rare illness, Hereditary Angioedema, would help me land a job. It turns out giving myself IV infusions came in handy. I work in blood collections.

Lupus SLE: I received a second opinion on Aug 16th, 2024, which confirmed a second time that I have Lupus SLE.

Food and Wellness: My rheumatologist also recommended I adhere to an anti-inflammatory food lifestyle. I walk a lot for mental well-being.

Iron: My primary provider sent me for labs and based on the results I am taking 325mg of iron daily.

I’m glad the change to cooler weather helped your wife. Hot and humid weather is definitely a struggle for me.

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“Tips from a rheumatologist for your journey with lupus
As a practicing rheumatologist, I have found that most people with lupus learn, over time, how to cope with the disease.

Family support helps a tremendous amount. A good doctor-patient relationship is also important. Friends can help with coping, as well.

There is often a period of sadness and grief when a person is sick, or immediately after an illness or diagnosis, but people with lupus gradually come to grips with that.

Other tips that may be helpful for your journey with lupus:

Focus on the future and what you need to do to get better.
Don’t look back at what might have caused your illness or ask, “Why me?”
Try to incorporate some level of exercise into your daily schedule.
Educate yourself about lupus and get involved in your own health care.
Stick to reliable sources of information on lupus. When it comes to reading about lupus in the library or on the Internet, be sure you are accessing reliable content. Read up-to-date books and visit trustworthy websites, such as this one, or the National Institutes of Health. Be cautious when reading blogs that relate personal stories, but not necessarily accurate medical information.

Embrace complementary strategies for managing pain. When coping with pain, visual imagery can be helpful; think of yourself watching the ocean or walking over a new layer of snow and try to relax your body. Distraction can help. Read, watch TV or a movie, pursue a hobby—anything that keeps your mind off your symptoms. Look for treatments, not cures.

Make the most of your medical appointments. When you have an appointment, write down what you want to discuss with your health care provider and prioritize it before you go so the most important issues are covered. Consider bringing someone along who can listen so that both of you have a good chance of understanding treatment suggestions. Don’t hesitate to ask questions if you don’t understand the advice. And don’t be afraid to call your physician if you have concerns, new symptoms, or any other problem.

Read: 6 keys to preparing for a medical appointment

If your symptoms worsen, talk to or visit your health care provider before changing your diet, medications, or over-the-counter supplements.

Try to talk about your illness. This is much better than internalizing your angst and worries. A psychologist or other professional counselor can help you talk about the effect the illness has on your career, family, and hopes and dreams.

Above all, realize you will get through this. With the support of your family and health professionals you are comfortable with, and your own commitment to the treatments prescribed, you can regain your life.”

Tips from a rheumatologist for your journey with lupus | Lupus Foundation of America

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“Important questions for your doctor when you're newly diagnosed
When you're newly diagnosed with lupus, you have a lot of questions. We created this guide to make sure you don't miss any critical information during those initial visits with your rheumatologist.

Once you get beyond the initial diagnosis, there are other important subjects to discuss with your care team: medications, lifestyle changes, diet and nutrition, or family planning.”

Important questions for your doctor when you're newly diagnosed | Lupus Foundation of America

“Learning to accept your lupus
A diagnosis of lupus remains with you for the rest of your life. And, a diagnosis of lupus also includes periods of feeling well mixed with periods of feeling ill. That is why learning to live with lupus involves making some changes -- physical, emotional, spiritual -- within your family, within your profession, within your social circle. In many cases, these changes will extend to how you define yourself.

But it is important to understand the significant difference between viewing yourself as a person with a chronic illness and viewing yourself as a chronically ill person. People who view themselves as chronically ill are allowing the disease and its limitations to take away a large part of their identity. People who view themselves as having a chronic illness are accepting the reality of lupus as one part of their identity.

You may find a source of strength and growth in the knowledge that you have a chronic illness but also a life beyond it. You may realize that living with your illness has made you more understanding of others whose lives are affected by sickness and pain. You may feel a greater appreciation for things you used to take for granted, such as the love and support of family, or hobbies, work, and activities that give you pleasure.

You may also find that your life and your identity are improved and enriched by sharing your experiences with others who have lupus, whether you volunteer with a local lupus support group or chapter, or help people with lupus in your community by listening or lending a hand.

You may even discover that sharing the knowledge of what to expect from a life with lupus, and what can be accomplished despite lupus, can be a powerful lesson for yourself as well as for others.”

Learning to accept your lupus | Lupus Foundation of America

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