I posted last week that we were headed to the Mayo for another round of tests. Just wanted to thank all of you for the supportive replies and positive thoughts and prayer.
What a week! My daughter developed Lyme disease (3 forms of it) 10 years ago, and the year before that she got shingles. She's now 23 and is too sick and weak to go to school or work. That's the short quick description of what life has been like for the last 10 years. Her fatigue is overwhelming, and she is constantly in pain, for undetermined reasons. She has had thorough psychological and neuro-psych tests and several experts have confirmed that the pain is not "in her head".
We first went to the Mayo in April, then again in June, and this was our third trip there. Each time, things were kind of confirmed, or not confirmed and we felt like we were narrowing in on her problems. Every single doctor and nurse that we saw there was kind, compassionate, and patient.
Now after this week, I feel as though a huge weight has been lifted. This week she saw Infectious Disease, Sleep Disorders, Rheumatology, and Genetics specialists. We were wondering if perhaps she still had Lyme, or if it had returned. The first thing the Infectious Disease doctor told us was that all of the blood work done previously confirmed that she did not have any active infections. Then she said something interesting. She told us that my daughter did not need to be in Infectious Disease, but in the Fibromyalgia, Post-Infection, Central Sensitization Syndrome department, and immediately arranged for us to go there immediately.
It was a lengthy appointment - over 3 hours! The specialist told us that this is a new field, relatively. Some people get a virus, and they barely even notice it. They're better in a few days. Others get a virus and get pretty sick and need antibiotics and rest, but they're back to work or their normal routines in days or weeks. Then others come to the clinic and tell the doctors that they had a virus, months or years or even decades ago, and they have never felt well since. The Mayo clinic has been researching the effects of viruses on the thalamus portion of the brain. The symptoms are: weakness that lasts for more than 6 months, fatigue even after a long night's sleep, and inappropriate pain. That one described my daughter to a T. The doctor told us "if I were to kind of gently, jokingly 'punch' your mom on the shoulder, in a good-natured way, she'd feel it but it wouldn't hurt. However, someone with Central Sensitization Syndrome or Post Infection syndrome could perceive that mild touch as the equivalent of a sharp needle, or they may feel the pain in their leg, or they may feel it in their shoulder but it wouldn't feel like a light punch but more like a burn from a cigarette, for example." The pain is misinterpreted by the thalamus. Basically, the pain wires are crossed.
The thalamus is also the part of the brain that allows us to "forget" a sensation. You know how when you put on new glasses for the first time, and you're very aware of the frames and the weight of the glasses, but after a few days you don't even notice them? Or why we don't continue to think about the socks we have put on after a few minutes, unless they're scratchy. The thalamus senses these routine sensations and realizes they are not a threat and disregards them. With this viral damage, the thalamus does not shut off routine and safe feelings, and the brain is bombarded all the time.
So my daughter has been officially diagnosed with Post Infection Syndrome, Central Sensitization Syndrome, Chronic Fatigue Syndrome (she had 14 of the 18 criteria, and 11 are needed for a positive diagnosis), along with a connective tissue disorder called Ehlers Danlos Syndrome. She tests positive for Lupus but it is not active and it's impossible to tell if it will ever be. But we know what to look for (joint pain and swelling, etc).
It was so amazingly wonderful to hear each doctor tell us and her that these pains and these weaknesses and this fatigue is real. Of course, there's no cure, and they did speak to her firmly but kindly about trying to do a little more, be a little more active, but they let her know she's not alone. We will get a physical therapist who is familiar with chronic pain and connective tissue disorders and get her started in a program. She's to do no impact exercises, and no repetitive movements. We'll also work with her psychiatrist to help her feel more positive and to try to perhaps take an online class, or try to ride the bus to the library or to do one brave thing. Each doctor told her not to change everything at once. They said to do one small thing - get up a little earlier and walk for 2 minutes outside, for example.
So I really feel as though we now understand what the Lyme disease and shingles viruses did, and although it's sad, we understand and don't have to keep wondering what is wrong with her. She felt validated and supported and understood, and that's priceless. Now we can get to the business of encouraging her. Just wanted to let you know how our week went. I've got a lot of reading to do - they gave us DVDs, booklets, print-outs, and all kinds of educational reading to learn about these syndromes.
Yippee... at least you now know.
Hopefully you will be able to find a support group for her and she will be able to live a fulfilling life again.
I'm so glad to read this, and thank you so much for the interesting information!
My mom has had CFS and fibromyalgia for 25 years. She swears that after she developed chemical-induced pneumonia from new carpeting that she never felt the same, and she has been treated for Lyme disease more than once. I can tell you that at age 70, she's still one of the healthiest people I know and with excellent diet, self care and supplements, a lot of self-advocacy and self-education, she leads a full life. She baby-sits my niece several days a week (as she did my own kids) and recently spent 4 nights on vacation with us, going to several beaches, out to eat, etc. She knows her limits, conserves her energy, gets her rest and has found balance that eluded her the first 10 years of living with this. In the beginning, it was hard to get doctors to not dismiss her pain, fatigue, mental fog and depressed mood as depression, aging or menopause. Little was known about CFS and fibromyalgia and few doctors believed it was real. I can't tell you how encouraging it is to see a place like the Mayo clinic dedicating serious research into this area - although there is no "cure" today, there is always hope for better treatment and perhaps a cure in the future.
I'm so glad that your daughter knows that her pain is real and that she's not alone. For my mom, connecting with other people who understood her experience went a long way to helping her achieve the level of recovery she has enjoyed in recent years. I hope the little changes your daughter tries will be successful and that she'll start to see some positive changes. Best wishes to her and your family!
Oh I am so happy to know you have an answer. I actually know exactly how you feel. 10 Years ago I had what was finally vaguely called post-viral syndrome following a mild respiratory illness. I was ill for about 1 year and they tested me for all kinds of things, including lyme and MS. This past year after watching my very athletic, happy and confident son fall apart I was so relieved to finally have him receive the diagnosis of PANS, which has a very similar profile as the syndrome your daughter is dealing with. My journey has not been as long, nor as difficult as your, but I do understand how you are feeling today. I wish you both the best possible outcomes as your daughter works to regain her life.
So wonderful that you got some more answers and some hope. This reminds me of a documentary I just watched on Chronic Fatigue Syndrome and mentioned that many people get it following a virus. In fact, there have been several times when there was an "outbreak" of it. One mentioned was in Tahoe area in 1984. There is so much more to that disease than we know. The film is called "I Remember Me" if you want to check it out. It's old, from 2000, so I'm hoping things are getting better for these patients. Good luck to you and yours.
Good job and wishing her strength on her new journey to better health!
E., Thank you for the update. I’ve been thinking about you & praying that things went smoothly and that you’d receive some answers & it sounds like you did! I’m so glad that they were able to make her feel supported. Hope the physical therapy will help her, which in turn will help with the daily challenges she is facing. How lucky she is to have such a strong & supportive mom!
I'm so glad you received some sort of answer! Knowing something is much better than not knowing at all. Prayers that your daughter will grow stronger and take the steps to follow the recommendations from the dr.'s.
May grace and peace be yours in abundance
E., thank you for the update. I have been thinking about you and hoping you were getting somewhere. It sounds like it was an exhausting week but that you have some answers. I know that YOU knew she wasn't making it up but it's got to be very liberating to have your instincts validated with a diagnosis. I'm happy that there's a plan to integrate her psychiatric counseling with this information. Let's hope this is the first step toward improvement. You're a terrific and dedicated mom.
Glad to hear this update and that you have this clarification regarding your daughter's illnesses and a plan for improvement. As the doctors said, take small steps and build on those successes, slowly, to avoid her getting overwhelmed and discouraged. Hopefully, she can find a support group back at home where she can receive support from outside the family circle.
Hope you are safely home or will be soon and that her journey to improved health can start anew.
J. F.
I am so glad the pieces of the puzzle are falling into place, and that you have some more guidance and direction.
Continued healing thoughts and prayers!
You are so dedicated to your daughter and going the extra mile to find out what is and what was going on. May our prayers stay wrapped around you in this time of need to give you strength to continue.
Thank you for giving us an update.
the other S.
E., I was thinking about you this week and your trip to Mayo with your daughter.
Thank you for the update and I hope that you can put to use the new information you have so that your daughter can improve.
Best wishes!
Very glad to hear you received some answers and support. Even more so for your daughter. Bless you and her as you move forward.
Thank you for the update.
Knowledge is power!
Best!
I'm glad you have some answers. Good luck to your daughter with the next step - implementing the advice of the doctors.
I'm very happy to hear you finally got some answers. It must be such a relief. I hope this helps your daughter feel better soon.
I'm so glad for you and your daughter for finally getting an answer. Knowledge is power and understanding what you're up against is half the battle. Thinking of you both!
May you and your family find peace and healing with this recent diagnosis.
Thank you for the update!
It's amazing to see that as our "tools" get better in science, we get a better understanding of how our body works and things make more sense.
How validating for your daughter to have a "real" Dx and a foundation to understand her bodies capabilities. I'm sure you feel relief also.
I hope that the two of you continue to channel your energy into understanding her medical conditions, reaching out to others and sharing your knowledge. There is just something about forming a community, when there is such little knowledge, about such debilitating symptoms that is so empowering!
Priceless indeed! Even if she's not any "better" how reassuring as a parent to get some clarification and confirmation for a change. Best of luck to her, and you!!!
I am so happy for you. So sorry to hear of what your daughter has been going through, but amazing that you finally know.
It sounds like they handled her case so well and now she can move on with her life - and you can support her. Things can only get better from here :) I hope her situation does not worsen. Just knowing though must be such a huge relief. That burden (of trying to figure it out) is now over.
I've been in a similar boat for years. It's really hard not knowing. The fear, the wondering what is happening to my body, the not being able to do what you once could ... is overwhelming and I know how hard it is on my family also. Knowing means you can accept and move on. Because you're not still struggling for answers.
Happy for you both :) Glad it went so well. Hopefully she will be able to take on more gradually and feel more positive overall.
Yes yes yes! My son had a chronic pain condition following a flu when he was younger. It was a nightmare, I was practically suicidal at the end of it. In our case it only lasted for 5 months, but 5 months of your child crying in pain every day are an eternity. I learned about this aspect of pain during that time, since when we weren't at a doctor's office, I was online researching, trying to figure out what it was. Pain science was new at that time, and no one understood what was wrong with him.
The younger they are when they get this, the easier it is for them to get over it. I know how wonderful it feels to finally get a diagnosis, so I'm happy for you and your daughter! Now that you know, you will be able to fix this. I have a book recommendation for you; if you are interested message me.
E.,
I'm so glad that you had such a positive experience! Every time I drove by Mayo this week I thought about you and your daughter. I'm continually amazed by the research that comes out of Mayo. I will continue to keep you and your daughter in my prayers. Take care!
E.
Thank you for the update! Glad you finally got some answers and I pray things go smoothly from here on out.
Thank you for posting an update. Best to you and your daughter!
T. Y
I'm so happy you had a positive experience. The doctors sound wonderful and it sounds like you and your family can take some positive steps forward. It must feel like the weight of the world was lifted from your shoulders. Again, so very, very happy for you and your family!
yay!!! perseverance, patience and persistently advocating positively for your child!
so glad you've got a diagnosis, and a game plan to move forward.
khairete
S.
