Effects of Chronic Pain

I have struggled greatly with pain for many years. It began as a child but was not as intense. I remember hearing people complain that they were in pain and it was just part of ageing so I figured it was a part of growing up. Little did I know it was abnormal. Searching for answers was no easy task. I am diagnosed with Systemic Lupus Erythematosus, Ulcerative Colitis, Hyperadrenergic Postural tachycardia syndrome, Ehlers–Danlos syndrome, Endometriosis, Mast Cell Activation, and Hereditary Haemorrhagic Telangiectasia . In addition I have chronic kidney stones, currently battling abdominal pain, frequent cyst, frequent infections, and an extra kidney.

With the opioid endemic it is nearly impossible for most to begin an opioid for pain. Personally, I am allergic to the “alternative” medications such as Cymbal,Amitriptyline, and Neutron.

I can understand to a degree the opidoid endemic. But the other part of me does not get it. People should just accept the pain to some doctors.  Furthermore, those who do drugs will always find a way to obtain them.

I have had to be creative in my pain management. Pain can be dictating causing one to quit their job or miss evens. Weakness is common due to lack of movement/exercise. Moreover, pain causes mood disturbance such as anxiety and depression. Many chronic pain warriors struggle with painsomina which is insomnia due to extreme pain. It is all a vicious cycle. It also effects ones memory also known as brain fog.

Most times doing absolutely nothing is not an option. I have a lot of outside of the box pain tips and I will be starting a YouTube channel. I will be making a pain management video with all my tips. If requested I will also do a blog post on it.

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Tapering Tips

There is plenty of information on Prednisone as well as the side effects. One can find a list of illnesses that it can help, which lets be honest the list is impressive. There are articles and vlogs on coping with being on the medication. Additionally, there is a facebook support group dedicated to the drug we love to hate.

On the other hand, information on tapering is scare. Coming off Prednsione is a difficult journey yet there is little information to make it less.

Coming off Prednisone has nearly shut down my body more than once after months of tapering pain. I am now in a situation where my doctor wants me off by July. For obvious reasons I am not a fan of tapering. I am determined to try to not feeling like I’m dying while tapering.

I have been trying tons of little things to make the process a little easier. I know many people struggle to get off this medication so I want to share what I’ve tired with you. Please note this is only my personal experience.

Vitamins

I have added a substantial amount of vitamins to aid my body as it adjust.  The vitamins I chose are based on my personal research,knowing my body/history, and considering all my illnesses. It is too soon for me to say how well most of these work. Potassium and magnesium are must add vitamins especially for muscle pain.

Though it is not the safest vitamin for me I finally decided to add turmeric for a few weeks due to it’s anti inflammatory agents. It thins ones blood which is my hesitation.  Boswellia. It helps with osteoarthritis, rheumatoid arthritis, asthma, inflammatory bowel disease, EDS, and helps pain. Methylsulfonnylmethane (MSM) is another vitamin I added. This should help with arthritis pain, osteoporosis, and muscle cramps. I struggle at times with eating and I am well aware that I don’t get all the vitamins I need through food. Because of this I added Super Fruit and Veggies tablet. I also switched my probiotic to 40 Billion CFU Guaranteed.  I have no idea if these will make it easier to taper. I am not sure if I will stay on all of the vitamins at this point.

Many in the Prednisone support group suggest looking into CBD oil to help whatever the Prednisone was treating. CBD oil is through to help inflammation, appetite, sleep, and mood. Additionally, some use Kratom to help with the pain.

“Native to the Southeast Asia, kratom (Mitragyna Speciosa) is a powerful medicinal plant used by thousands throughout the world. The medicinal potentials of this plant are vast, some of the most prominent include: pain relief, opiate addiction treatment, mood lifting, energy and immune system stimulation.

There are entire forums on the use and benefits of this impressive plant, which speaks for this plant’s virtue more than we ever could.”

During The Day:

Gentle stenches and work outs are ideal with frequent breaks. Staying hydrated is vital while tapering.I have POTS and therefore, it is difficult to remain hydrated. I recommended checking out electrolyte tablets or powered.  Personally, I like the brands Drip Drop and The Banana Bag.

Of course, eating as healthy as possible is an assets. I have struggled with eating the whole time I was on Prednisone so this has been a struggle. I have slowly been adding in fruits as I tolerate it. Small meals are ideal.

While tapering I need to take more frequent breaks and pace myself. It is important to monitor heart rate, blood pressure, or blood sugar if needed while tapering.  I monitor my heart rate and blood pressure.I find that I get stressed out coming down. Therefore, it is vital for me to take time out for myself to de stress. Making a de stressing tool box can be helpful.

Sleep is vital to tapering. I don’t know about anyone else but I feel so drained while tapering. I have nearly no energy all day. Currently I am getting about 10 hours of sleep. Some people take naps. Either way sleep is vital.

Bath:

I recently got a magnesium spray but it is too soon to say if it is working. I have found baths to be extremely helpful with my tapering pain. I add a bath boom, Epson salt, and aches and pains bah soak. Don’t underestimate a  bath till you’ve tired it. I am going to be learning how to create bath bombs. If I discover a great recipe I will share it with you all. I always use Aches and Pain Relief by Village Naturals Therapy.

There are many topical over the counter options for many people tapering. Sadly, I am not one of them as most of these products have been irritating my mast cell. Some products to look into include icy hot, trigger balm (which was my favorite), Bio Freeze, or Bengay. In addition to creams, there are patches and sleeves too.

Slow and Steady

When tapering there is no such thing as too slow. The slower the better. Going slow allows glands to kick back on that have been asleep due to the medication. I fought for one mg tablets and finally got some. For the remainder of my taper I am decreasing by 1/2 mg. My taper schduel has been rewritten at least a dozen times at this point. So most likely, it’ll change again. However, at the moment I am planning to go down 1/2 mg every four days.

Another tip I have heard in passing is to alternate doses. I haven’t found this to be helpful but it is worth trying. Example 10, 7.5,10, 7.5, 10, 7.5, 7.5.

You need to find what works for you and stick to it. I am trying to convince myself to go as slow as I need to even if that means not getting off till August. I am not trying to be disobedient to the doctor but I need to do what’s best for my body at this point.

 

 

Diagnosing Lupus

There wasn’t a defining moment or even chapter in my life pointing to when Lupus invaded my body.  The pain began at age six. I quickly learned how to fake well. Overall ignoring the pain. It was mentioned off and on through the years to my pediatrician. No one was persistent with any of my symptoms or complaints. My first severe flare up was at nine years old. I had back to back ‘viruses’ blamed for every intense symptom. I was put on homebound, unable to go to school. The older I got the sicker I got. The more intense the pain. The more symptoms appeared.

I longed for a diagnosis. For someone to take me seriously. I was told countless times I was too young to be in so much pain, too young for a chronic illness. The first rheumatologist I saw did no testing, yet placed me on a medication. At first, I was relieved and full of hope. That is until I began having an allergic reaction. The doctor insisted on increasing the medication. I began having psycho seizures and stopped taking the medication. I saw a few other rheumatologists. Everyone eagerly promises to get to the bottom of my case at the first appointment then quickly becomes discouraged telling me they are clueless or there is nothing wrong with me.

One day I was discussing my frustrations with my cousin. She asked me if I had been tested for Lupus. I had no clue what Lupus was, but I had not been tested for it. She advised I check out the Lupus Foundation of America. Which of course, I did that evening and I was in awe. This illness was a perfect fit. It described every wacky symptom I had. From that point forward I did research on Lupus and spoke with the foundation several times learning as much as possible.

My symptoms mirror a perfect textbook case. In the beginning of my case, I believe due to my age, my labs were not always positive. I have had some of the top doctors on my case all of who believe firmly I have Lupus, but the way my body functions is different from most people. I am not normal by any standards.  After a long battle, I got my diagnosis. As soon as I received it I asked for it in writing. I switched doctors due to going away to school then switched again due to getting to sick and coming home. I had a doctor take me off all my medication including Plaquenil. The doctor told me I just had Fibromyalgia. He sent me to a Fibro doctor claiming she was the best in the field and she would agree with him. Well, that backfired for him. She told me I was a Lupus patient and needed a better doctor. She quickly got me into the team of doctors I am with now.

I switched doctors due to going away to school then switched again due to getting to sick and coming home. I had a doctor take me off all my medication including Plaquenil. The doctor told me I just had Fibromyalgia. He sent me to a Fibro doctor claiming she was the best in the field and she would agree with him. Well, that backfired for him. She told me I was a Lupus patient and needed a better doctor. She quickly got me into the team of doctors I am with now. Though, we frequently become frustrated still with my case and have different options I love my team of doctors. Having good doctors is a true treasure. Knowing that they will listen, are trustworthy, and will try to help makes things slightly less stressful.

I came home a few weeks early from college my first semester with the plan of getting things under control and then going away again the following semester. I found out I had severe double pyelonephritis (kidney infection). It lasted a little over four months. My body has not been the same since the infection.

I thought knowing the name to the monster reeking havoc in my body would be my big break though, the end of my major struggles. I thought I would get my life back.

It is also a battle keeping a diagnosis. Medication makes labs look pretty than the doctor begins to overthink.It seems when blood tests are postive they are never positive enough. When additional test records something alarming it is brushed off to the side. It feels like a game. One I don’t want to play. My symptoms equal the classic Lupus textbook case, but my labs do not always reflect this.

Diagnosing any autoimmune disorder is a complex task. Even in the medical field, people are not educated enough about autoimmune diseases- especially when it comes to Lupus. This is one reason awareness months are vital. Not only do those who suffer with the illness get support and educated, but doctors have new chances to become educated as well as people not directly affected by this particular illness.

Illness Awareness Month

Illness awareness months are a big deal providing an avenue for education. Furthermore, it gives those enduring the illness a set apart time to celebrate all the victories they have had over their illness. It seems more socially acceptable to take off the healthy person mask revealing how life is with a monster on the loss inside. Our awareness month also gives us the much-needed reminder that indeed we are not alone despite the feeling of isolation. It is a cracked door allowing outsiders to get a tiny glimpse into living with a chronic illness.

May is one of those months that someone was like let’s see how many illnesses we can raise awareness for in this month and they might have been a bit overzealous. On one hand, it’s great, especially if the majority of your illnesses have the same awareness month. On the other hand, it is a bit much in a short month.

With a complex illness, you could easily take a year or more talking about the illness, testing, medications, and daily living. Times that by over 12 is hectic. To complicate things a bit more the majority of us have more than one chronic illness!

  • American Stroke Awareness Month (promoted by the National Stroke Association)
  • Arthritis Awareness Month
  • National Asthma and Allergy Awareness Month
  • National Celiac Disease Awareness Month
  • Hepatitis Awareness Month
  • Lupus Awareness Month (promoted by the Lupus Foundation of America)
  • Melanoma/Skin Cancer Detection and Prevention Month
  • Mental Health Month
  • National High Blood Pressure Education Month
  • National Osteoporosis Awareness and Prevention Month
  • Preeclampsia Awareness Month
  • Inflammatory Bowel Disease: Chrons & Ulcerative Colitis.
  • Fibromyalgia
  • Ehlers-Danlos syndrome

I currently have a diagnosis of the following just from this list: Lupus, Ulcerative Colitis, Osteoporosis, Arthritis, and Asthma. In addition, I might have Autoimmune Hepatitis and Ehlers-Danlos Syndrome.

I always like to challenge everyone to learn one new thing in May about one illness. I am a strong believer in education others about chronic illness. I have encountered medical professionals who have been in need of education (I am not trying to be rude in any way). I have had people in the medical field ask me what’s Lupus? A basic understanding is helpful. Knowing just a little bit helps, even if you are not sick, for the day you encounter someone with an invisible illness.

I could go on all day on this topic, but I won’t as I am sure you have plenty on your to-do list today. Have an amazing day! Be sure to Like Chronically Hopeful on Facebook and subscribe to this blog! There will be a handful of guest bloggers which I am SO excited for!

The Problem of the Semester

Introducing the problem of the semester. Each semester I seem to run into at least one big obstacle with my health. Lupus doesn’t think college is eventful enough.

After coming home from the hospital, I collapsed, at least, four times from POTS landing on my right hip. Needless to say, I was experiencing hip pain. It was determined that I didn’t break anything. Even so, the pain was getting worse. I knew there was something wrong.The concern became that it was possible my body wasn’t providing enough blood to the bones in my hip. That could cause a bone or tissue to die. My doctor sent me for an MRI which revealed a growth along with some torn cartilage. Now I am waiting to see a specialist to see what the next step will be. Waiting is one of the most challenging things. Not being able to do much for the pain and not knowing what they will suggest to do for the issue at hand.

With Lupus, there is hardly ever a dull moment. I think about my friends with Lupus and everything they go through because of this illness. It can feel like you are just overcoming one obstacle and boom there is another. At times, it is difficult to process everything that is happening. We get use to dealing with certain things like blood work, but additional obstacles don’t become easy to deal with.It threatens our Lupus normal and can cause stress. This is one reason it is vital to have a support system not just of encouraging people but also of others who are dealing with chronic illness. Those  of us with chronic illness have a different perspective and provide a different element of support to one another.

At times, people tell us how we should react to an obstacle or tell us the ‘magic’ cure. If you are also facing a health obstacle it’s okay to feel emotional or to feel fine. Your emotions are not wrong. You have enough strength for whatever you are going through. Wishing you all a wonderful afternoon. 🙂

 

Hospital Part 2

Part two more or less of my hospital stay. I apologize it is all over the place.

I had two strange nose bleeds. I have had more nose bleeds in my life than I can count but these were different. My second one happen 4 am. I got blood everywhere in my bathroom, it poured out uncontrollably. I am anemic currently so I feel that it is related.

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I had a repeat colonoscopy last Tuesday.  The picture above is my special drink. I usually do Miralax for colonoscopies. I found this solution to work quicker, be less painful, and taste somewhat better. I did get dizzy.  This one is called go lightly. I got the solution late in the day and was still nauseated so my nurse told me to drink as much as I could without making myself sick. I got more than half down.

I had been given my insomnia medication the night before the scope. I usually don’t take it at home and I had forgotten why until I had an emotional meltdown directly after the scope. I didn’t get much sleep the night before and woke up too soon after the scope. I wasn’t crying because my colon has healed somewhat. I was crying because I was scared of not being taken seriously and being taped in this abdominal flare up. I know the pain levels need to come down in order for me to function better. Apparently not everyone understands that humans have emotions. Someone had told my mom that I need a psychiatrist. I get extremely irritated when people dismiss me or downplay my pain and symptoms.

I believe that crying can be helpful in coping with an illness and life in general. Medication can also play into emotions. I have had people tell me I need a better attitude when I am doubling over in pain at the doctors office. No one smiles 24/7.

The IV fluids were my best friend. It makes a huge difference. I ran low-grade fevers off and on as well.

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I was discharged late on the 6th. I have only been home a few days, my body is still trying to adjust. Last night I wasn’t able to sleep. I started having IBS/IBD symptoms 4 am. Therefore, Saturday was  difficult. I had a lot of nausea. I couldn’t take any of my meds until 1 pm. The doctor had been talking about readmitting me, but I don’t feel that is necessary at this point.

I see a newish Gastro Friday. We are hopeful that she will be able to help. I am still randomly bruising and bleeding. I am able to eat some. Grateful for the small improvements. Thank you to everyone who prayed for me when I was in the hospital.

 

Chronic Illness & Summer

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Summer became my favorite season as a teenager. The break from school was nice, but the adventure of summer was the most appealing aspect. Having the time to be outside more to hiking, swing, and go swimming. Just about every summer as a teen I went away with my church. From mission trips to camp to a pilgrimage in Taize.

Having Lupus has changed my relationship and view of summer. It is nice, but it is something that I would rather not deal with. I have severe sun sensitivity. Worst then the average Lupie. With in minutes of being in the sun, I begin to feel ill.  Sometimes even being in the car when the sun is out makes my symptoms worse. Currently I avoid the sun as much as possible, it is the only thing that works. Sun screen does not help me, though it makes a huge difference for many people with Lupus.

If you are sun sensitive be sure to take Vitamin D. Know your limits with Lupus. If you can be in the sun for an hour, just do an hour. Don’t push yourself more then your body can handle because that can and most likely will push you into a flare up.

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This will be my first summer with POTS. Dehydration is a concern for anyone in the summer, but even more so if you have POTS. People with POTS become dehydrated easily. The past few weeks I have been battling dehydration. My best advice for other POTies is to drink lots of water and Gatorade. The electrolytes are needed. Though I am new to the POTS world, I would advise people with POTS to be careful in the heat. Too much heat can cause someone to become dizzy and pass out. Again it is essential to find balance with any illness and summer.

What challenges do you face in the summer with your chronic illness? How do you cope with the challenges?