We just stuffed ourselves for another Thanksgiving and it’s less than a month away from Christmas! Did you think that’s what I was talking about? It’s what most people think about in November and December, but this time of year can also create a lot of anxiety for the chronically ill. It’s called open enrollment.
Those who work for large companies and have group insurance where the employer pays most of the premium cost may not quite understand (although I’m hearing that even in those cases, folks are paying more and receiving less benefits). But if you are self-employed, elderly, or are disabled, open enrollment can leave your head spinning. You have a small window to decide on your healthcare plan which you will be stuck with for the entire next year, so it is not the time to make a crucial error! Yes, there are agents who can help with navigating this process, but many of them are very busy because so many people need help.
Because the government website is often slow, another site is healthsherpa.com which some insurance agents utilize. For the chronically ill, it is imperative that you enter in your doctors and medications to see if they are covered under each plan. Make sure to look at deductibles, co-pays, and what types of care are omitted from the plan. For example, pain management is sometimes not included. To the healthy, a plan with a $6000 individual deductible might be worth the risk to lower premiums, but the sick have a combined problem of not being able to pay for the deductible in addition to needing lower premiums because they are possibly unable to work.
This can be a scary process. For me, I pray for wisdom and God’s direction to get into the right plan. It’s not a decision that can be made in one day. Be methodical and try to remove emotion from the process. A decision based on emotion rarely has good outcomes. Still, even with the best planning, the fear may remain for the chronically ill that they may find themselves in a battle for coverage over this next year with the insurance company. It might be for crucial medication, coverage for a specific doctor, or coverage for larger costs such as equipment or hospital stays. Memories of previous situations like these can haunt the chronically ill so it becomes a battle of the mind during this time of decision-making.
I tell my daughter that if insurance roadblocks do occur over the upcoming year, we will just have to deal with it and pray for guidance. If medication is denied and it is too expensive to afford, it might mean that a disabled person may suffer a setback. A mostly healthy person with a good income might say, “No big deal if my insurance won’t cover this medication. I’ll just pay cash for it.” But can you imagine if you had no way to pay for that $300 or $1000 a month prescription? Again, a mostly healthy person would say, “there are cheaper generics that could be afforded.” Not so in certain cases. Some more affordable medications may not work for that individual. One app that is worth a look is GoodRx. It can be used even if a person has insurance and it searches pharmacies for the cheapest cash cost on drugs. Unfortunately, it cannot help when the cost is more than a person can afford.
These are the things the chronically ill are thinking about this time of year. It’s sort of a shame that open enrollment must occur during what is supposed to be a joyous time. What about you? Are you trying to figure out the best healthcare for next year? You are not alone, so don’t try to figure it all out on your own! My favorite verse is Jeremiah 33:3 where it says, “Call unto me and I will answer thee, and show thee great and mighty things which thou knowest not.” I may not know what to do, but God will help me when I call out to Him
I had lunch the other day with a friend who wanted to eat at a steakhouse. He had been in the hospital recently and had his mouth all set for a big, juicy steak. He seemed a bit disappointed when I refused the warm bread and then only ordered a baked sweet potato and salad. I explained that I hadn’t been feeling well and was still amid a lupus flare. It reminded me that I had promised to do a post a while back on the paleo diet. Digestive problems are very, very common and the cause of these issues can vary. I’m not claiming that the paleo diet cures any condition! Today’s post is simply a little something for people to read, which may or may not be helpful with their own personal journey to be well. I post it here under Medical Issues since it is part of my own medical journey. If you are one of the lucky ones who can eat anything you want, just stop here. You won’t get it and you’ll be totally annoyed!
I’ve always had digestive problems. I love food, don’t get me wrong! I wish I could eat everything I wanted to, but all too often, I’m left feeling like I just don’t digest my food. I’ve tried digestive enzymes, probiotics, fiber, dairy free, gluten free, lowfodmap, eating for my blood type, even seeing a doctor! I truly believe that each person needs to try different things and see what works for them.
For a long time, I thought that wheat and dairy were the problem, but after going dairy and gluten free and still having issues, I decided to combine some different things, which essentially is paleo. For me, I feel best when I avoid all grains. So, what do I eat you ask? I eat a very natural diet: fruits, vegetables, meats, nuts, and, yes…dark chocolate! I avoid dairy as much as possible (it makes my cystic acne worse) as well as a few high fodmap foods like garlic and onions. I do occasionally eat some wheat, but my slowed digestion reminds me that I cannot do that too many times in a row. I minimize sugar and notice fructose makes my gut very, very angry! (This ingredient can even hide in some so-called healthy beverages.)
For breakfast, I may cut up apples, sauté in coconut oil, and then add that to bananas, almond butter, almond milk, and sprinkle cinnamon on top. (Recently I’ve tried gluten free oatmeal soaked in almond milk and a tablespoon of good yogurt, combined with strawberries. It’s not paleo, but occasionally, I can tolerate it and it’s delicious!) Sometimes I just make scrambled eggs with any combination of vegetables mixed in. No toast! For lunch, I love any leftover veges from the day before or I’ll make a big pot of butternut squash soup and eat that over days. When I made this soup recently, I toasted the squash seeds and sprinkled them on top. I also love homemade pesto (made without garlic) on top of this soup. One of my favorite lunches is cut up leftover cold chicken along with any veges in the fridge like celery, grapes, strawberries, and almonds or cashews on top with a little olive oil and balsamic vinegar. Dinner is simply any meat along with more veges. I don’t like red meat too often, but I do eat chicken and LOVE salmon! A bedtime snack may be a cup of tea with some cut up fruit, avocado, and/or a handful of nuts, and maybe a piece of dark chocolate. I had a zucchini to use up and made some gluten free dark chocolate muffins which are in my freezer. I’ve been having some trouble staying out of them! So, as you can see, you must enjoy life also so I don’t feel guilty for indulging in treats I love sometimes.
I’m hoping the paleo diet helps to decrease inflammation and ease joint pain over time for me. Time will tell. At the very least, it seems to calm my sensitive digestion system. Sometimes eating out can be challenging and I can feel a little self-conscious when people wonder why I might not be eating much. I’ve learned to not worry about that and just try to enjoy the moment being with others. What about you? Have you gone to drastic measures to enjoy food again?
About a month ago, I wrote a little bit about a recent setback that my daughter suffered due to our broken health care system. At the time, I was too tired and angry to share the details, but I did want to share our experience in the hopes that it might be helpful to other EDS Mamas out there. When you have a child who relies on many medications to function from day to day, in the back of your mind is the concern that maybe one day, accessibility to any one of those medications might become restricted. Now, I’ve come a long way in trust and peace in my life, so it’s not like I lose sleep worrying about this; it’s just a reality that it might possibly happen.
Well, this is exactly what happened when the health insurance company informed us that they would no longer be covering one of these medications for our daughter. At first, they called and said they would be switching her to another form of the same medication (no problem here) and then we received a letter in the mail stating that before they gave approval for this, they were requiring her to try two other drugs from a list of some very scary medications (BIG problem here). Now some might say we should just pay cash for the medication they were now withholding. Not so simple. To make a long story short, our daughter had to jump through all the hoops and suffer for several weeks until they finally approved the medication we needed.
Some might say that this is what insurance companies must do to control cost. Nope! This new medication is much more expensive than the one she had taken for years. Plus, we had more doctor visits to get through these weeks, including a trip to the Emergency Room! (That is a whole other post to deal with anger from that day.) Doesn’t seem like a smart financial move for the insurance company.
I can see now why some who do not have a person to advocate for them would just give up dealing with the insurance companies altogether and resort to other forms of medicating. When you have walked a similar path, you can understand another person's pain, frustration, and the choices that are made.
As I prayed about the anger I felt as I watched my daughter suffer again now in her life, God reminded me that He was still there fighting this battle for me, that He had a plan, that somehow, He was working for our good, and that just because I was angry, it did not give me a right to sin out of that anger. I also was fully aware that when I harbored anger, it just hurt me and those around me. I could be thankful in the moment that we had a doctor who was just as frustrated as we were that he was not in charge of his patient’s care, but that someone behind a desk on the other end of the phone was making those decisions, someone who had no medical background at all and who did not understand what was best for this patient. (Our doctor hardly ever deals with insurance, but in this case, he had a heated conversation on our behalf with the health insurance company.) I wrote a heartfelt thank you note to this doctor and it comforted me at the time to see there was still good to be found.
One thing that was very helpful even though the insurance company said it would not change anything, was to file a grievance with them. The paperwork they sent us said we could even request an expedited or emergency (3 day!) review since the length of time it would take to review our grievance would interfere with our daughter’s full recovery (she was falling into a flare which could have lasted months) and because it was delaying treatment for severe pain. This is where an EDS Mama comes in because the patient may not have the energy or clear thinking to advocate for herself. (My heart hurts for chronically ill individuals who have no one to help them. These are the ones who get lost in the red tape.) As soon as I faxed the expedited grievance, I received a phone call the next morning about 7:15 am. They were granting our request and I broke down on the phone. My only regret is that I had not filed the grievance sooner.
Another thing that kept me focused was to keep my eye on the prize. I knew that if we could just jump through these senseless hoops, that in the end, we would get to the medication that was needed. I only prayed that along the way, the damage would be minimal getting there. Each day, it was hard to see my child suffer with severe pain again, which we had not experienced to this extent for several years. She regressed to using a wheelchair, barely slept for weeks, could no longer manage her own medications, and had to withdraw from her college class.
Today, I sent a follow up letter to the insurance company with the motivation of advocating for all patients. I surely hope it will not fall on deaf ears, but that it would spur more consideration to the well-being of the patient. I’m afraid that what we went through could be a reality for you as well one day, dear one. Our health care system does not always work for the best interest of the patient. The comforting thing is that GOD DOES. He is always working for our good because He is ALL GOOD! Romans 8:28 NIV says, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”
Today is going to be a very open and honest post. I thought we were at the point of managing a lifelong chronic illness. We were in a stable routine with EDS. My daughter has a different life; her body needs the right medications to keep things in balance. You change one of these, even a little too much, and it throws the whole body off.
I’m angry and tired today. I’ve been talking with God about how I process the anger I feel. Anger against our health care system with all its red tape. Anger that insurance companies make decisions for our children’s healthcare which are not what is best for them. Anger that it should be our doctor along with input from the patient who make these decisions.
I’m too tired to write all the details today. My daughter has gone backwards because of our healthcare system. It makes no sense and for those of you who want to come to defend the health insurance companies’ interests, I can assure you it is not all about money. When my daughter improves and I get some much-needed rest, I will write more in the hopes that it might help you, should you happen to find yourself in this same unfortunate place. In the meantime, I wanted to share with you a device which we have been using A LOT over these days and throughout the nights.
We love this electric massage device to help ease body pain which has now escalated due to medication changes. Along with warm Epsom salt baths, this has helped our daughter to cope especially through the sleepless nights when the pain and restlessness are at their peak. As a side note, my daughter used this on me after my recent ankle injury which resulted in widespread pain. It seems to give temporary, effective relief. My daughter also uses it during stable times to help ease tight muscles which come along with EDS.
I hope this gives you one more tool in your toolbox, EDS Mama. Know that I pray for you and your children and, boy, can I use your prayers today as well. As always, it comforts me that there are others out there like us who understand.
For many years, my daughter and I were inseparable. Because of the unpredictability of her unknown condition, we never knew when we would need to rush her to an emergency room or at what moment she might become unresponsive. My brain was her walking medical record and so I rarely left her side for years. She had no need for a medical bracelet.
Eventually after a diagnosis, she moved into her twenties and her unresponsive episodes became well managed through medication. It gave her and I both some freedom for her to begin to have times away from me, so with the goal of her reaching full independence, we made the decision to get a medical bracelet for her.
This gave both of us peace of mind that if we were not together at the time of any medical difficulty, those around her and medical personnel would be aware of her condition. See, to an average person, a POTS episode may be confused with other medical conditions. Her bracelet also says that she has Ehlers Danlos Syndrome which might impact the plan of care for her. Later, we added an extra charm to her bracelet when she started on a specific medication which could interact with other medications that she might be given in an emergency.
There are different types of medical bracelets and even necklaces available. Some bracelets contain an SD card which medical personnel can access if needed. You can decide which kind is best for your case. One downside of wearing any bracelet is that people immediately see you have some sort of medical condition. Most assume you have diabetes. My daughter doesn’t want everyone to see the moment they meet her that she has a medical condition. I asked her recently if she wanted to stop wearing it so people wouldn’t know that she has a chronic illness. She explained that the bracelet makes her feel safe for times that she is away from home and she had no intention of taking it off any time soon. As EDS Mamas, we must make all sorts of decisions for our children. Sometimes those are good decisions and sometimes we make decisions which we regret down the road. Often, we are too hard on ourselves and wonder if we've done anything right. A little medical bracelet may sound like such a small matter to other people, but for today, hearing her response made me smile on the inside.
As a daughter of a Canadian mother, I grew up enjoying a daily ritual of afternoon tea. To this day, even though my mother has passed, I still almost every day take time out in the afternoon to sit down and savor a cup of relaxation. Today, I excitedly jumped into this tradition with complete enthusiasm, plunked down on my comfy chair and pulled my feet up under me, telling myself I had full permission to soak in this time for me and enjoy God’s goodness of provision. Let me explain why…
I love when my daughter and I leave a doctor appointment knowing we have another person on our team. Today was one of those days even though we did not walk out with a magic prescription to make everything all better. Recently, we have been in transition with several doctors. (My calendar looks very, very full with appointments.) Just when we thought we were all settled into our team of doctors, God has us on the move again! Does this mean we are doctor hopping? Absolutely not! Quite the contrary. Just like our pain doctor verbalized today, we need to feel like the doctors we work with are doing their best to help us, to understand us, and to live out the balance between improving quality of life and preventing more harm.
This balance is a fine line with EDS. Without sounding hopeless, this is a genetic condition without clear cut treatment options or easy fixes. This same pain doctor tells us he now has four EDS patients who are all very similar. Just that comment alone gives us some validation and comfort. He wishes he could tell us to take this or do that and life would be easier and less painful. Truth is, we are in the group of EDS patients where not much relief has been found when it comes to pain. There are only so many options. Because of the sensitive gastrointestinal tract that accompanies EDS, some medications are off the table. It is hard to hear that if only my daughter also had an autoimmune connective tissue disease or rheumatoid arthritis, she might be able to get more treatment options and some possible relief.
We understand that at least for now, we do not have many options left and that may mean accepting this is the best we are going to get. The unfair part of EDS is the constant re-evaluation of goals and dreams to force them to line up with the reality of what the body will allow. Does this mean all hope is lost? Not for one minute! God CAN change this all in a blink of an eye; He can heal simply because He chooses to and it is EASY for Him!! Until that happens to the physical body (God has healed in spiritual and mental ways), it comforts a Mama to know we can look forward to certain doctor appointments because there are those who are working WITH us to help us have the best life possible, who openly admit they do not have all the answers. And when that happens, there is no judgement in the patient room. As an EDS Mama, we don’t get to experience this very often. Close your eyes and breathe in what that feels like for a moment. Mmmmmm. I just have to thank God for sending us here to this doctor, for this time to actually enjoy.
Here I was, trying to take my daughter to doctor appointments and not only could she not walk on the bottom of her feet from nerve pain, but she did not even have the energy to walk into the office, let alone the energy to get from the car into the house when we arrived home. For a while, I tried utilizing the office’s wheelchair if I was lucky enough to find one in the entrance of their building. Things became so difficult that my husband scrounged up an old, rickety, abandoned one from an office building which he manages. It served the purpose but was very cumbersome, much too large for our daughter’s petite size, and very uncomfortable for her with a soft, sagging seat which did not help her pain. We continued to drag our heels on the pursuit of a very own wheelchair for our daughter because we kept hoping that she would get better and this phase would pass.
Eventually, it was our family doctor who realized her condition was not improving any time soon and we just needed a wheelchair so we could get to appointments. After a denial and fight with the insurance company, her basic wheelchair arrived. Yep! Can you imagine a person cannot even walk on her feet and the insurance company says she does not need a wheelchair?! The chair was nothing fancy, but at least it had a memory foam seat and was sized to her frame. I wish we had pushed for it sooner as it made my job so much easier as her transporter.
Not long after that, I started to pester my husband about building a ramp in our garage. We had only two small steps leading into the house from the garage, but it was nearly impossible for her to walk up those stairs even with assistance. Some days I would watch her crawl up them because it was easier than walking. When we finally made the decision to install a ramp and I saw how it gave her back her dignity to not crawl up those stairs, I was ashamed that we had not done that for her sooner as well.
While the wheelchair may have made my job easier, doctors do not like to see a young girl using one. Some would admonish us for allowing her to use it. My answer to that was to address it right then and there in their office and tell our daughter to get up and try to walk for them. When they saw that her legs could not even hold her up, how they would wobble under her like a newborn calf, they would quickly change their tune. Even still, at follow up appointments, it was not unusual to be made to feel that we were not doing enough to get her out of the wheelchair and that somehow we were to blame for her being in it. Yes, we even had one doctor openly say that to us. Ouch.
My daughter is almost twenty-two now and managing a lifelong condition with EDS. She does not like to use her wheelchair as people see the wheelchair before they see her. She never wants the pity of others. Walking any distance not only triggers profuse sweating and shakiness, but creates severe pain later in the day or on the following day. There is always a price to pay for trying to be “normal.” Some days I wish she would choose to take her wheelchair so that we could go more places. And yet I know that even in the wheelchair, exhaustion can set in quickly and shorten our times out of the house. It’s not the answer that fixes everything.
It is also important to realize that even though you obtain a wheelchair, it does not mean your child will need it forever. EDS is a variable condition. There are good days and bad days. It may take years for an EDS child to come to terms with using the chair. He or she may choose to stay at home rather than be seen in public in the chair. I wish we had not waited so long to secure a wheelchair. Now that we have one, it makes me feel prepared that I will be able to transport her if or when she is possibly wheelchair bound again.
Are you trying to manage without a wheelchair for your child, EDS Mama? Maybe you are not at that point yet of needing it or perhaps you will be one of those who will never need it. If you have days you could benefit from one, I can say that it is nice to have it when you need it and you and your child should never feel guilty about using it. Furthermore, it does not mean you have given up hope for healing simply by getting one. Don’t be so hard on yourself, dear Mama. One does not have to physically walk in order to walk with God. 2 Corinthians 5:7 says, “we walk by faith, not by sight.”
Advocating for a child with chronic illness is a full time job. You have probably spent hours that add up to years on the phone with doctors, nurses, hospitals, insurance companies, representatives of different companies, and so on. Just when I began to wonder how many more years I could really keep doing this, I started to see my daughter begin advocating for herself. Quietly, I thanked the Lord because I needed some help in this process.
Every once in a while, there comes a day where my daughter gets off the phone in tears and my heart goes out to her because I know what that discouragement feels like. It is a realization that you are not getting anywhere in the conversation with the person on the other end and in walks utter exhaustion. She and I help each other now on days like this and it makes life manageable.
I have always despised speaking on the phone. I tend to get really nervous and my throat tightens up, making me feel out of breath. I know this is one of my weaknesses and yet I have had to do it anyway over the years. I do a lot of praying before making difficult phone calls. Prayers do not miraculously make my body feel complete peace, but God has given me a clear mind during these times and given me words that I know are coming from Him. I am also fully aware that He is orchestrating circumstances during these phone calls for our good.
Even when the conversation makes no sense to me humanly, when it ends with what feels like a loss, it’s a win for me! Just yesterday, to help my daughter out, I made a phone call on her behalf to a doctor’s office. It ended in the fact that we will have to find a new rheumatologist. My daughter was devastated because the process of starting at the beginning with a new doctor is a huge hurdle since many doctors do not know about Ehlers Danlos Syndrome. I assured her that when things don’t make sense, God is up to something. He has done this enough in the past that I have seen His goodness in meeting our needs by sending us in a new direction. So, I am excited for where He is sending us next. When I get there, I know it might feel to me humanly like God made a mistake, like He sent us to the wrong person, but He is doing so much more behind the scenes that we cannot see!
Be strengthened dear Mama if you find yourself feeling anxious with the process of phone calls and advocating. Exodus 4:12 ESV says, “Now therefore go, and I will be with your mouth and teach you what you shall speak.” This was God’s promise to Moses, but He is the same God to us. He will equip you, strengthen you, and give you the words to say.
Anyone with EDS will tell you about the hoops that must be jumped through in order to be taken seriously and to get proper treatment. There is so much ignorance out there about this genetic condition that many doctors (even after a diagnosis) continue to blame physical symptoms on mental problems. The first time my daughter was not believed by the medical community was back in sixth grade. Even after meeting with two psychologists in a leading hospital and passing their exam with flying colors, doctors still continued to blame the patient, dismiss a physical diagnosis, and point toward a mental disorder. This left lasting scars to a child that remain to this day. It took eight years to receive an accurate diagnosis! No wonder we, as EDS Mamas, have mixed feelings toward psychologists and psychiatrists!
I am so thankful for the Ehlers Danlos National Foundation which educates the medical community and tries to help minimize these scenarios. Still, there is a lot of progress to be made, and unfortunately, this attitude becomes very normal in the day to day doctor visits of EDS patients. Some doctors probably tire of the physical problems which do not have easy fixes. Even after working with a doctor for years, you may be startled to hear him or her start to bring up mental issues. Sometimes it is easier to blame emotional factors than to admit an inability to help the patient. Time to find a new doctor! Unfortunately, this can cause an EDS Mama to want to avoid psychiatrists altogether!
Dear sister, you may be worried about your child coping with the challenging life that EDS brings. My husband and I did. We forced our daughter to see a psychologist just to make sure she was coping in healthy ways. Even after passing this initial test, we took her to a Christian counseling facility to meet regularly with a psychologist. Your child may be saying he or she is fine, but EDS is a very difficult road to travel. Sometimes as parents we are afraid to take our child to a therapist because we do not want physical problems to be dismissed as mental problems, but we have to get beyond this because these children are socially cut off, in extreme physical pain, and often not attaining the same milestones as their peers. How are they possibly coping?! If you fail to address the mental side of treatment, you may find out when it is too late that your child was not managing as well as initially thought. We have to be open to the idea that our child may need support for a co-morbid mental condition or, at the very least, need someone to talk with so that he or she can be mentally healthy.
Proceed cautiously though. You WILL run into psychiatrists who want to make bigger issues just so they look like they have it all figured out. They want to make mountains out of molehills, which really holds you back from getting the help you need for your child. For example, you do not want to be focusing on a non-existent mental disorder when what you really need is a medical doctor or physical therapy. It was our experience that addiction based pain clinics sometimes put more emphasis on mental issues than was necessary. You may be stretched in your faith when the pain clinic will only help you if you use their pain psychologist! Do Not Be Afraid, EDS Mama! God has your back in all this! We do not have to be afraid of any man in this lifetime. “Greater is he that is in you, than he that is in the world,” I John 4:4 KJV. We have worked with some great psychologists who have added to the support that Mom and Dad are already giving. Pain Psychologists can teach pain techniques that might actually help to a certain extent!
I am so thankful for Christian counselors who can bring a spiritual, biblical perspective to emotional health. Even a non-Christian counselor can have benefit. Just remember that God is our great Physician: physical, mental, and spiritual! I do not believe that we can be completely mentally healthy without first being reconciled to God. Accepting His Son as our Savior is the first step toward healing. He is the best psychiatrist we could ever go to with our problems and we better be making an appointment with Him as well! As scary as it seems, EDS Mama, do not be afraid to address the mental side of healing for your child. God will go before you and protect you both.
Every EDS Mama has to hear over and over how her child really needs to be exercising. We bite our tongues from muttering, “No duh, Doc!” We know that one of the best therapies for Ehlers Danlos Syndrome is physical therapy, however it is another thing to live that out. Your child is likely severely, severely fatigued. Only other patients with EDS or any other condition that causes deep fatigue that is not remedied by sleep would understand. It means a person only has so much energy in a day. It means showering only when a trip out of the house is planned and it means not showering on the same day as the outing. It means that as much as a mama knows physical therapy will help condition her child, she may not physically be able to get her child to the therapist. It means the child may walk into the building for therapy and leave in a wheelchair. It means she gets the child to the parking lot but the child has no energy left to get into the building for the therapy. So what is a Mama to do?!?!
Your first challenge is finding a therapist who understands EDS and/or POTS. Tell the receptionist when you call for an appointment that you are looking for a therapist familiar with EDS and ask how many other similar patients he or she has treated. The first response you hear when you say you have joint pain is that water therapy is low impact. We found that water therapy was not a good match for our daughter who also has POTS. The pressure of the water can cause big blood pressure changes and exacerbate POTS symptoms. Swimming left her in severe pain in the days following. Her connective tissue let us know it was very angry with this approach. Manual physical therapy was very helpful but requires a knowledgeable therapist. It was both gentle and gave good results. We tended to avoid chiropractors for fear of over extending joints, especially the neck, and hypermobility meant the adjustments did not last more than a day or two. Exercises to strengthen the core may be really helpful as many EDS patients express difficulty just holding themselves up. One piece of equipment which was fairly tolerable was the NuStep, a recumbent type bicycle which also works the arms. It did require some caution when our daughter was in very poor states since the movement of arms can also cause big blood pressure changes with POTS. After so many years of physical therapy, an EDS patient learns the variety of exercises which are acceptable and helpful and it may not be worth the energy used to leave the house for therapy. The NuStep company is based in Ann Arbor, Michigan and offers payment plans for home use.
Walking on a treadmill may be tolerable, however exercising upright can cause blood to pool in the extremities resulting in a passing out episode. As much as we have not found compression stockings to be helpful on a regular, daily basis, this is one situation that their use might allow a treadmill to be another form of exercise and give some variety. Similar to the upright exercise of walking, we found that riding a regular bicycle also was not tolerable due to the blood pooling in the legs. The nice thing about the NuStep is that it puts the patient in a more tolerable position.
There is no one physical therapy approach for every EDS patient. It takes some trial and error to find what works. Perhaps exercising at night might help your child sleep better since it is so tiring. Encourage your child to make goals to exercise several times a week or every day if possible. As hard as it is to do it, conditioning will help to increase daily stamina. Doctors will also tell you that exercise helps with pain. That, my dear friend, is a fine line. Sometimes any physical activity causes pain for days after, but I can tell you that inactivity creates a downward spiral that you do not want to go down.
And Mama…do not forget about exercise for you! You must take care of yourself to be able to care for your family. If you are housebound right now with your child, walking outside in the fresh air even for 15 minutes several times a week can give you not only exercise, but a few moments to yourself. It can be just one little thing you choose to do for yourself so that you can continue to be a healthy person.