Top Adaptation Tips for RA and PsA

Oral Meds

Those who live with Rheumatoid Arthritis, Psoriatic Arthritis, Lupus, Scleroderma, and other life limiting diseases know that daily life can be challenging. When the joints are painful or don’t work, modifications to a daily routine may be necessary.

These are some of the great tips I’ve collected from different people who struggle with these diseases. At the end of each suggestion I will post a link to the items on Amazon.

  1. Use pump bottles in the kitchen and bathroom. Oils, lotions, shampoos, conditioners, body wash, etc are all much easier to use when in a pump dispenser. If your items don’t come in pumps, you can transfer them to a variety of bottles. LINK
  2. An alternative to the pumps, place several rubber bands around the bottles to make them easier to grip. I don’t have a link to these, but when I use the rubber bands, I will wrap probably ten or so around each bottle.
  3. Ask for non-childproof containers at the pharmacy if you don’t have small children at home. If you must use the childproof caps, they make openers that make it easier to take the caps off. There are several different styles. LINK
  4. Use mobility devices like a scooter, walker, cane (I use a gel handled cane that makes it easier to use without causing pain to the hand LINK), or wheelchair as needed. Even if you don’t need a mobility device all of the time, use one when you need it. I started using one in Disney World several years ago. Now, my disease has progressed to the point that I use a scooter any time I will be walking long distances. This is a photo of one I rented many years ago. More recently I’ve bought my own. In the long run, it ended up costing less. If you decide to purchase one, shop around. There are many different styles and models. LINK  Scooter
  5. Grab bars for the shower and toilet will help prevent falls. LINK
  6. An elevated toilet seat with bars will make rising for the toilet easier. LINK
  7. Compression gloves. I use the IMak ones when I’m using my hands quite a bit. They do help a lot. In the winter, I will wear them under my other gloves as liners to help keep my hands warm and decrease the chances of a bad Raynaud’s attack. LINK
  8. A long-handled dust pan helps prevent having to bend over to when sweeping. LINK
  9. When having to reach for things, you can use a reacher-grabber. LINK
  10. If you have limited range of motion, bending can pose a problem. A device to help pull up socks can be a great help. There are several different styles and models to choose from. LINK
  11. Long-handled lotion sponges help spread lotion to the legs, feet, and back. LINK
  12. A foot-washer. LINK. Alternatively you could use a long-handled brush for your back and feet. LINK
  13. A shower chair in order to sit while bathing. This helps conserve energy and at times is a necessity due to pain. LINK.
  14. A shower nozzle on hose helps control water flow when using a shower chair. LINK
  15. A Swiffer sweeper and wep mop are an alternative to sweeping and mopping. LINK
  16. Bed Caddy to hold the things you need next to the bed. LINK.
  17. A stool in the bathroom so you can sit while getting ready.
  18. Extension cords for hair dryers, curling irons, flat irons, etc so the cords will be long enough to use the devices when sitting.
  19. Shower cleaning is made easier using a mop. A sponge mop has a lever that allows you to squeeze out the excess water without using using your hands. LINK.
  20. A steam mop or a combination steam mop/vacuum. LINK.
  21. One of those robot sweepers. They make several types and price ranges. LINK 
  22. A long pillow placed between the legs helps keep the hips in the correct position and will cushion the knees. LINK
  23. Rocker knives and soft-handled utensils in the kitchen help when hands don’t work well. LINK Also the OXO Good Grips makes several different types of utensils, mops, etc with soft grips. LINK
  24. A kitchen stool helps when preparing food when standing is a problem. LINK
  25. Rubber grippers for door knobs. LINK Or lever-type knobs. LINK
  26. Plastic cups, plates, glasses and cups or mugs with handles to help prevent breakage when dropped. You can also get the Tervis tumblers. If you drop them and they break, they will replace them free of charge. LINK
  27. Seat cushions for when your hips ache. LINK and Swivel seat cushions for cars and chairs that require twisting to rise. LINK
  28. Gas cap openers to make it easier to fill your car with gas. LINK
  29. Bottle openers for water, soda, etc. LINK
  30. Non-tie shoes or shoe laces LINK

Do you have any favorite tips or tricks that I haven’t covered? Please share them if you do!

Rheumatoid Arthritis Clinical Trial

 

Rheumatoid Arthritis Clinical Trial Seeking Participants

Rheumatoid Arthritis is a chronic inflammatory disorder affecting small joints in the hands and feet that affects about 1.5 million people in the United States today.

There is a clinical study available to those with Rheumatoid Arthritis, where the purpose of the study is to compare the proposed biosimilar study drug rituximab (GP2013) against a standard approved treatment rituximab (Rituxan®) to see if the study drug is as safe and effective in treating rheumatoid arthritis.

RA Card

More about the study:

  • The study drug (GP2013 and Rituximab) is administered by IV Injection (IV).
  • At least 174 people have already taken this drug in clinical trials

If you are interested, the full study details and eligibility criteria are listed here.

Eligibility Criteria:

Participants must:

  • be at least 18 years old
  • have been diagnosed with rheumatoid arthritis for at least 6 months
  • have had inadequate response or intolerance to DMARDs (disease-modifying anti-rheumatic drugs) and 1 – 3 anti-TNF (tumor necrosis factor) therapies
  • have received methotrexate for at least 4 months with 25 mg/week as the maximal dose

Participants must not:

  • have significant liver disease, or congestive heart failure
  • be taking a high potency of opioid analgesics (e.g. methadone, hydromorphone, morphine)

Please complete the online questionnaire to check if you’re eligible for the trial.

If you’re not familiar with clinical trials, here are some FAQs:

What are clinical trials?

Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.

Why participate in a clinical trial?

You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.

“My Relationship to CureClick” (full-disclosure link): http://curec.lk/1Gb4toG

Please note: Comments are user-generated and may not be factually accurate. Please click here for information on the trial.

New Clinical Trial for RA #RA Click To Tweet

Demyelination and Connective Tissue Disease

Brain

 

Demyelination and Connective Tissue Disease

I’ve been having some odd symptoms over the last couple of years. It started with numbness, tingling, crawling sensations on the left side of my face, neck and chest. Intermittent blurry vision and occasional double vision sent me running for eye drops frequently. Then I noticed at times I my memory was very poor, and I started falling more often. Not just falling, but frequently walking like I’d had a few too many drinks. My balance was terrible.

When I saw a neurologist, he was a little concerned that they symptoms could be from several things like Multiple Sclerosis or a stroke. He ordered MRIs of my brain, neck, and t-spine.

The results came back with areas of demyelination in the brain, but the lesions didn’t look like typical MS lesions. Since the symptoms continued to worsen with the development of intermittent numbness and tingling in my lower leg, feet, and hands, the neurologist sent me to an MS specialist.

When I saw the MS specialist, she reviewed my MRIs and assessed me. She diagnosed me as having demyelinating disease caused by my connective tissue disorder. Since the lesions are small, she felt they were from the connective tissue disease and not from the Enbrel I’d taken for many years.

Since I’d taken Enbrel for around fifteen years, the rheumatologist stopped it when we first started looking at the neurological disorder and he put me on Orencia. The MS specialist found literature that Orencia can worsen demyelination, so the neurologist has taken me off that.

I repeat the MRIs in a few months. If there are new areas of demyelination, then the MS specialist will start Rituxan, which will also help with the connective tissue disease.

I have seronegative rheumatoid arthritis, the rheumatologist doesn’t necessarily agree that the connective tissue disease is causing the demyelinating disease, but whether or not the two are related, the treatment will be the same.

I ignored many of the neurological symptoms for several years because I assumed they were related my prior cervical spine fusions.

Rheumatoid Arthritis Treatments – NSAIDs

Rheumatoid Arthritis Treatments

Oral Meds

 

 

There are many different treatments for RA. Some of the more common ones include NSAIDs (non-steroidal anti-inflammatory drugs), DMARDs (disease modifying anti-rheumatic drugs), steroids,  and biologics. Today, I’m focusing on NSAIDs

Anti-inflammatory drugs include (generic names used):

  • Ibuprofen
  • Naproxen Sodium
  • Aspirin
  • Celecoxib
  • Sulindac
  • Oxaprozin
  • Salsalate
  • Diflunisal
  • Piroxicam
  • Indomethacin
  • Etodolac
  • Meloxicam
  • Naproxen
  • Nabumetone
  • Diclofenac

NSAIDs work to decrease inflammation. They can work quite well in RA and other inflammatory diseases, however, they should be used in the lowest dose possible to help decrease the risk of side effects.

Side effects of NSAIDs can include:

  • Ulcers
  • Gastrointestinal bleeding
  • Increased bleeding tendency
  • Liver and/or kidney problems
  • High blood pressure
  • Edema

If you are taking NSAIDs for RA, your doctor will want to periodically assess your liver and kidney function. This is done through blood tests and if your liver enzymes or kidney function is not within range, your physician may ask you to stop the medications.

You should report ulcers or gastrointestinal bleeding to your physician right away. Symptoms of ulcer may include stomach pain and nausea. Gastrointestinal bleeding may present with coffee ground emesis, black or tarry stools, pale skin, severe fatigue.

Please consult your physician for any concerns or before initiating NSAID therapy.


http://www.webmd.com/osteoarthritis/guide/anti-inflammatory-drugs

Harrison’s Rheumatology: Editor Anthony S. Fauci

 

Rheumatoid Arthritis Complications

rt hand 5

Rheumatoid Arthritis Complications

 

Rheumatoid Arthritis is an autoimmune disease that can cause widespread complications.

Muscles and Joints: 

Joint deterioration and deformities making it difficult to perform daily tasks, like buttoning a shirt, pulling up a zipper, tying shoes, or even just pulling on clothing.

Carpal tunnel syndrome

Inflammation may cause tendon rupture. This most commonly affects the tendons on the back of the hands.

Cervical myelopathy – a dislocation of the cervical spine which can put pressure on the spinal cord.

Muscles may become weak and patients may have severe muscle spasms. In the photo below, the toes are spasming and pulling downward.

Spasming Toes

Nerves: Peripheral Neuropathy can result in numbness, tingling, and burning tingling in the hands and feet from nerve damage

Blood/Blood Vessels: Many patients with RA develop anemia, and some of the medications used to treat RA can affect other blood components, like the white blood cells. Anemia can lead to dizziness, weakness, and fatigue.  Decreased white count can make the RA patient more prone to infection.

Inflammation of the blood vessels, or vasculitis is a rare complication of RA. It causes thickening, of the blood vessel walls leading to problems with blood flow through the vessels.

Eyes: Scleritis and Episcleritis – inflammation of the blood vessels of the eye – can cause a gritty sensation and redness of the eyes. This can result in corneal damage.

Increased Risk of Infection: Just having RA makes the patient more prone to infection, but also the medications taken can put the person at a higher risk of developing an infection.

Skin: Rheumatoid nodules develop in about one fifth of RA patients. These nodules are usually under the skin and appear on the forearms, heels, fingers, and elbows. They may develop gradually or appear suddenly. These nodules may also occur in the lungs and heart.

Osteoporosis: Loss of bone density is more common in RA patients.

Lung Issues: Chronic lung diseases like interstitial fibrosis, pulmonary hypertension, pleural effusion, and nodules.

Rheumatoid Lung is a group of lung conditions commonly found in RA patients. It includes nodules, fibrosis, and pleural effusions.

These lung issues may present with symptoms of shortness of breath, chest pain, and cough.

Heart: RA patients have an increased risk for developing heart disease, heart attack, stroke, and blood clots. They also have a higher risk for developing pericarditis – inflammation of the sac surrounding the heart and myocarditis – inflammation of the heart muscle.

Cancer: RA patients have an increased risk of developing lymphoma, leukemia, and other cancers. Use of TNF blockers may possibly lead to an increased risk.

Emotional: Living day to day with a chronic, painful illness may lead to depression and anxiety, yet many RA sufferers don’t discuss this with their physicians.

While there are many complications of RA, getting an early diagnosis and following the treatment plan may help lower your risk of developing any of them.

If you have symptoms of any of the complications of this disease, please talk to your physician about it right away. Delaying may lead to worsening of the condition.

 References:

http://www.nhs.uk/Conditions/Rheumatoid-arthritis/Pages/Complications.aspx

http://umm.edu/health/medical/reports/articles/rheumatoid-arthritis

http://www.nytimes.com/health/guides/disease/rheumatoid-arthritis/complications.html

http://www.healthline.com/health/rheumatoid-arthritis-complications#1

http://www.webmd.com/rheumatoid-arthritis/guide/rheumatoid-arthritis-complications

 

New Feature

Boy in sidecar

 

New Feature

I’ve added a new feature here at GimpyGal. Downloadable forms you can complete and take to your physician’s office. So far, I only have one – Autoimmune Profile. It has check boxes to assess Pain, fatigue, swelling, fever, etc. and it has text boxes where you can document questions, etc.

This document is a weekly document to help you and your physician evaluate the effectiveness of your treatment regimen.

Just click on the “Documents” link to view and/or download the available documents.

As time goes on, I will add other documents. If you have a specific request, please feel free to contact me.

Depression and Suicidal Thoughts

_DSC0293-2 - Copy

 

Depression and Suicidal Thoughts

 

With the recent death of actor Robin Williams, I felt it was important to interrupt my series on Rheumatoid Arthritis to talk about depression.

Studies show between 15 and 60% of people dealing with chronic illness, experience clinical depression. However, I believe at different times in the course of the disease, most people who deal with chronic illness and autoimmune diseases face some degree of depression. The diseases attack the body and once we learn what our “new normal” is for life, something changes, and we must accept a revised version of normal. This can lead to depression.

Depression is not a sign of weakness. Depression is not a sign you don’t have enough faith in God. Depression is not something you just push through and deal with.

Depression is a very serious sign that something is wrong and you need help to deal with it. In our “pull yourself up by the bootstraps world” we have difficulty understanding this insidious thief. It robs our joy, and steals our happiness, yet many times we don’t understand why.

Dealing with chronic illness day in day out is wearisome. Fatigue, coupled with pain, and flu-like symptoms takes a toll on the body and mind. If you’re experiencing depression symptoms along with your disease symptoms, please do not ignore them.

Symptoms of Depression Include:
  • Feeling sad, empty
  • Difficulty concentrating or making decisions
  • Loss of interest
  • Increased fatigue
  • Feelings of guilt, worthlessness, helplessness
  • Feelings of hopelessness
  • Irritability
  • Restlessness
  • Fixating on past failures
  • Insomnia
  • Sleeping too much
  • Persistent anxiety
  • Overeating or loss of appetite
  • Frequent thoughts of death
  • Suicide attempts
Warning Signs of Suicide in Depressed Persons:
  • A sudden switch from being sad to suddenly calm or even happy
  • Frequently talking or thinking about death
  • Depression that worsenings
  • Putting affairs in order
  • Tempting fate by risky behavior
  • Losing interest in things the person once cared for
  • Saying things like “It would be better if I weren’t here” or wanting out
  • Making comments about feeling worthless, or hopeless
  • Visiting those the person cares about

Depression must be taken very seriously. The risk of suicide with depression is high and anyone who expresses suicidal thoughts should be taken seriously. Call 1-800-SUICIDE (1-800-784-2433) or 1-800-TALK (1-800-273-8255) or the Deaf hotline at 1-800-799-4TTY (1-800-799-4889).

 

References:

http://www.lupus.org/answers/entry/can-lupus-cause-depression

http://www.webmd.com/depression/guide/detecting-depression

http://www.mayoclinic.org/diseases-conditions/depression/basics/symptoms/con-20032977

 

 

Rheumatoid Arthritis


Feet

 Rheumatoid Arthritis

A look at symptoms

RA or Rheumatoid Arthritis is a poly-inflammatory arthritis meaning it causes swelling and pain in more than one joint.

It’s not your granny’s arthritis. While Osteoarthritis can develop in patients with Rheumatoid Arthritis, they are two distinct processes.

Rheumatoid Arthritis is an autoimmune disease. This means the patient’s immune system is malfunctioning and attacking the patient’s joints.  Since RA is a systemic disease, it can affect the heart, lungs, eyes, blood vessels, neurological system,  and even the blood components.

Symptoms of RA are usually insidious. At first the patient will have fatigue, loss of appetite, weakness, low-grade fever, and vague musculoskeletal symptoms.

As the disease progresses, the patient develops pain and swelling in multiple joints.  This usually happens in a symmetrical pattern–both hands, both feet, both knees. All joints may be affected by the disease.

The joints become painful, tender, and stiff. Morning stiffness lasts more than an hour and can last several hours. The stiffness of Rheumatoid Arthritis is nothing like muscle stiffness or joint stiffness from over-use. It’s much worse and can affect the person’s gait due to stiffness in the joints of the feet.

Possible symptoms of RA include:

  • Fatigue – The fatigue associated with RA is not relieved by rest. In fact, many times the patient wakes more fatigued than when he went to sleep the night before.
  • Joint inflammation – it may start in the joints nearest the hand – the wrists and fingers, but it may involve all of the joints. This inflammation can lead to joint erosion causing increased pain and deformity
  • Fever – Usually a low-grade temperature
  • RA Nodules – Not everyone develops these small bumps of tissue that form under the skin, but those who do, develop them on pressure areas. Nodules vary in size and aren’t usually painful.
  • Tendon inflammation and possible rupture
  • Anemia
  • Ischemic heart disease
  • Pericarditis – inflammation of the sac surrounding the heart
  • Pericardial effusion – fluid in the pericardial sac (sac around the heart).
  • Cardiac Tamponade – compression of the heart muscle caused by fluid in the pericardial sac – can be very serious.
  • Pleural Effusion – fluid accumulation in the sac lining the lungs
  • Pulmonary nodules – nodules forming in the lungs
  • Dry eye syndrome
  • Scleritis – inflammation of the sclera(whites) of the eye.
  • Keratitis – inflammation of the cornea
  • Scleromalacia – Thinning of the sclera of the eye
  • Nodules near nerve roots causing neurological symptoms
  • Cervical spine subluxation – dislocation of the first vertebra of the neck.
  • Hoarseness – caused by Rheumatoid changes in the cricoarytenoid joints (joints of the voice box)
  • Systemic vasculitis – inflammation of the blood vessels
  • Felty’s Syndrome – A syndrome that affects the blood countsBook Ad
  • Increased susceptibility to infection
  • Depression
  • Anxiety

Rheumatoid Arthritis is so much more than “just arthritis”.  This debilitating disease impacts the patient’s life significantly. On average, within ten years from diagnosis, the patient is no longer able to continue working, relationships are impacted because the patient is no longer able to participate in the activities he use to love.

As a systemic disease, RA decreases the life span an average of ten years. In patients with severe disease, untreated disease, or disease affecting the heart, lungs or blood vessels may have a severely decreased life span.

Sources:

WebMD
Family Practice Notebook
Arthritis.com
Healthline
Harrison’s Rheumatology Second Edition; Editor Anthony S. Fauci

Disabilities in Disney World

Disney World

There has been much discussion on the DisDining Blog on her Top 10 Bad Behaviors on a Disney World Vacation. Her number 6 urges park goers to watch out for strollers, wheelchairs, and scooters and not cut them off because none of these can stop quickly.

Many of the people have made some remarks about those who use scooter and/or wheelchairs. These comments show a lack of understanding about invisible diseases like Lupus, Rheumatoid Arthritis, Psoriatic Arthritis, Multiple Sclerosis, Heart Disease, severe Peripheral Neuropathy, and many, many more.

The comments ranged from frustrated to cruel. Here are a few examples:

there are privileges for people in wheel chairs at Disney also. One year we had to use it for our daughter when she had rods put in her back. BUT the number of rude people in wheel chairs and parents pushing strollers is huge. I could bet that 80% of the people who use them don’t really need them at all. Most are overweight and that is their excuse for using one.

One pet peeve of mine is scooters going to the front of the line. I am fine with it obviously if you are handicapped and you truly cant stand in line but a person who has a scooter because they are overweight or have a sore ankle and brings 5 or 6 people with them to the front of the line and then get off the scooter and walk onto the ride. Its fine to have a scooter to get around the park to cut down on the amount of time you are on your feet but if you can walk on your own then wait in line like everybody else.

#6 – this is a two way street! I won’t cut them off, but most of these people upset me every day on my trip because they are using wheelchairs when they don’t need to or they are constantly cutting me off!

The fat ppl who rent the motor scooters ans practically hit and run ur children. Also obesity is not a handicap and an excuse to cut the line. A bunch of excited four year olds should get first crack at pirates or the mansion over someone who ate too many fries to walk

I have to agree with most, however im not a 100% in agreement with #6 as I read on a lot of people also feel the same way. If I see a family walking with a stroller I will stop and stop my children so the rest of the family with the stroller can stay together that’s not a problem for me. My problem is the scooters and the wheel chairs . If some one is in a wheelchair or scooter for a medical reason fine its the over weight people and the lazy people that don’t feel like walking all day that drive me crazy . So stay back at the pool. I don’t mean to sound mean but some people use the wheelchairs and scooters to hold bags and to cart young tired children around or they are too heavy to walk . Now, aunt gertie lets little Bobby drive the scooter in circles while waiting for his family to come off space mountain and running everyone in sight over. And instead of saying oh im sorry they think its cute lil Bobby is driving a scooter. like I said before stay back at the hotel lil Bobby im sure will tell you all about his trip to magic kingdom in the morning.

The over-reaching think I see, is many of these people believe those who rent scooters and don’t look ill, are just fat and lazy.

I do realize some of the people making these comments do not want to understand chronic, invisible illness and nothing anyone says will make a difference, but there are some people who honestly don’t understand invisible illnesses and think if someone looks healthy, they are. After all, most of us with chronic illnesses strive to look our best when we go out in public. We actually put on make-up, dress decent, and try to appear normal.

In this post, I’m going to focus on autoimmune diseases in general. Future posts I will delve into the individual diseases and the symptoms caused be each one. Hopefully some of my friends who suffer from various diseases will allow me to share their photos.

Below, I’ve shared some of my photos. This is something I rarely do, but I thought it was important. I don’t look ill, in spite of having more than one autoimmune disease.

The first photo is before I developed the autoimmune diseases. Second is several years after a very bad flare necessitating prednisone for many years. The third photo is more current. I’ve been off prednisone except in short bursts for several years.

In the middle photo, it’s obvious that I’m quite heavy, and in the last photo, I’m still heavy. It’s something I’m working on, but it’s difficult when mobility is limited. The point of the photos is, while I look obese in the last ones, I don’t look ill.

Most people with autoimmune diseases look just fine. We don’t have missing limbs, limbs in casts (unless we’ve had recent surgery or a flare causing problems in a specific joint). In fact, to look us most people would never know we had a chronic illness.

I’ve shared these photos to show how chronic illness has changed me. Before I developed RA, I was very active: went to the gym three days a week, took Tae Kwon Do three nights a week, and played football, volleyball, went bowling, dancing, etc on the weekends – in addition to practicing Tae Kwon Do. I was young, energetic, and healthy.

Fast forward a few years. The middle picture shows what immobility and prednisone can do to the body. This photo was taken after I’d been on prednisone for many years. I didn’t like the changes in my body, but there was little I could do. 

Finally, my physician found the right combination of medications and I’m no longer on prednisone except in short bursts. I am still overweight. It’s a long road to return to a healthy weight.

My diseases have progressed to the point that I now must use a scooter to go any distance. I haven’t been able to go to Disney World or Disneyland for several years without the use of a scooter. If I’m going to a large store, I have to use one also.

People look at me like I’m “fat and lazy” and use the scooter because I don’t want to walk. This couldn’t be any farther from the truth. I would love to be that energetic girl who went non-stop once again, but unfortunately I cannot. For many years when we went to theme parks, I pushed myself and refused to use a wheelchair or scooter, but these diseases don’t stand still – even with medications the disease progresses. Not like it would without the medications, however. 

Most autoimmune diseases cause the following symptoms:

Fatigue – unlike normal fatigue, the deep, bone-aching, intense fatigue isn’t relieved by rest. Many times those with autoimmune diseases wake up feeling even more tired than when they went to bed. Many times we cannot do the things we really want to do. It’s frustrating for us, then when others get angry or upset with us over it, it multiplies the symptoms.

Muscle and Joint Pain – This can range from burning and aching to feeling like someone has a jackhammer destroying the joints – which in the case of Rheumatoid Arthritis and Psoriatic Arthritis – is kind of true since the body’s immune system is destroying the joint. The pain may also move. One day it may be the feet, the next the hand. It can also move hour to hour. Many times it’s a generalized achiness. 

Fever – at times people with autoimmune disorders will have an elevated temperature. With some AIs (autoimmune) it can be a low-grade, but in others, the fever may go quite high.

Hair loss – The hair loss can be caused by the disease or by the medications to treat the illness.

Flu-like symptoms – All AIs cause generalized malaise, or ill-feeling. Think about how you felt the last time you had the flu. People with an autoimmune disease feel like this most of the time. 

Brain-fog – This symptoms comes and goes, but it causes the person with the autoimmune to feel a little disoriented. It can be caused by the disease or the medications.

Depression – Finding out you have a debilitating, chronic illness that you will deal with for the rest of your life is depressing. Then you add medications that can cause depression to the mix and most with autoimmune diseases suffer some degree of depression. 

Isolation – while this is not a direct symptom of the disease or medications, it is a result of not being able to fully participate in life. We do go on vacations, to family get-togethers, etc as much as possible, but for the most part, we spend a great deal of time alone.

The next time you see someone using a wheelchair or scooter, even if they can “obviously” walk, keep in mind, while they may walk a little ways, walking the entire park, store, mall, etc may be overwhelming due to the fatigue and pain.

Try to imagine living your life with a bad case of the flu. Every. Single. Day. You ache all over, feel exhausted, and have fever, dizziness, and nausea at times.

Most people who get the flu go to bed, take medication, and put life on hold until they recover. Those with chronic illnesses don’t get that luxury. We must push on for our families, and because we want to be a part of life. Being absent from life adds to the feelings of depression and isolation.

Before you make the harsh comments, stop a minute and think about those who have invisible diseases. The comments about us just being “fat and lazy” do hurt. We would trade places and walk the parks, stores, etc at any time. However, we would never wish this illness on you or anyone else.