I haven' t posted to this site before, but I've read many people's posts. I have to say that sometimes reading the posts did nothing but take away my hope. My daughter is 13 and was diagnosed with FND in October. She is in constant pain and has 'baby giraffe legs'. She struggles to walk and has been out of school since October. She can't walk around or sit for extended periods. She spends most of her time in bed. We did everything we could to help her: physical therapy, water therapy, CBT, pain doctors, a long list of pain meds, and nothing helped.
We looked to The Mayo Clinic in Rochester, Minnesota for help. She saw neurologists and other doctors in January. We have now spent 1 week in the Pediatric Pain Clinic. The difference in my daughter is AMAZING. She still has pain and struggles to walk when she gets too tired, but she bowled tonight and played laser tag! Watching her laugh and play with others is something that she hadn't enjoyed for too long. She is learning how to manage the pain and 'turn down' her pain receptors. I will keep you posted, but if you can look into the Mayo Clinic, I would.
The students are staggered entry, so we have seen several kids "graduate' from the program. One was dependent on a walker and left walking. Others have other serious conditions, and all the parents swear their child has their life back. They have futures that may require a slower pace, but they have a future.
I cannot say enough about The Mayo Clinic. I will keep you posted as we spend the next 2.5 weeks working on my daughter's FND and pain issues. Please, you owe in to yourself &/or your child to at least look into it. mayoclinic.org/patient-visi.... Department of Pediatric & Adolescent Neurology 1-507-284-3351. Ask about the Pain Clinic and/or BeST clinic. (They also have an adult pain clinic.)
Also, we were denied to the program the first time. When we called about it, we were denied because we were missing a form from a doctor. I don't know why they just didn't let us know that's what they needed. If we hadn't called, my daughter would not be here. If you are denied, call them back and ask why. It could just be that you're missing something. youtube.com/watch?v=IKngXdH... & adult pain clinic success story youtube.com/watch?v=Pcj2ZVq...mayoclinic.org/departments-...
There is hope!
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ClayKitten
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I’m happy for your little girl “wow” amazing. You might not be aware but majority of the users here are from UK and don’t have access to MayoClinic maybe they have something similar.
I have noticed that many of the users on this site are from the UK and Canada. However, if they could find something similar in their home country, how wonderful. There is hope, and people need to know this. Good luck to everyone. Don't give up.
I'm so happy for your daughter but am not sure why she was diagnosed with 'fnd'. The WHO are recoding pain with the following instruction “A diagnosis of somatic symptom disorder implies that the pain is caused by a behavioral, that is, mental condition. However, it is not appropriate to diagnose individuals with a mental disorder solely because an alternative medical cause cannot be established,” Jaochim Scholtz, MD, an IASP task force member, explained in Practical Pain Management.
I wish 'fnd' wasn't being mis and over diagnosed so much because maybe if it wasn't there would be better provision of services for the genuine cases.
Thanks for the info. I called a few weeks ago and they told me they would take my medical history over the phone and then decide if they would even offer me an appointment. She stresses to me that I may not be offered an appointment. I got an email 2 days later stating I would not be offered an appointment and I needed to seek help locally. There was no explanation. I had been told by the Arizona location that there next available appointment was in 18 months. I never called back to find out why. I am in the hospital again for another full body paralysis episode, the 8th one in 2 years. I will call them and find out why I was denied an appointment. I can't find a doctor locally who knows anything about FND. I spend 3 weeks in the hospital every 2.5-3 months.
I don't know your situation, but did you get a doctor to refer you to Mayo? That may help. I believe that's why we were denied at first. When I called, they told me to get a doctor's referral. If you've seen a specialist, I would ask them to send the referral.
We are at the Mayo in Rochester, MN. You should call them. They specialize in pain management/FND. There is a mom and child here in Rochester from Scottsdale, AR. They left their Mayo in Scottsdale for Rochester because this is where the best pain clinic is. So definitely call the Rochester Mayo. The Arizona one may not have the right clinic for you and maybe that's why you were denied.
We, too, struggled to find any doctors who understood FND.
Your full body paralysis sounds scary. I hope you can find someone/someplace to help you with that. Don't lose hope. Try Mayo again. Good luck.
We were referred by a doctor, but she didn't send any paperwork, just told me to call. I got an appointment at the AZ clinic 1st but then they called me and said they didn't see FND and told me to call MN, that is when I couldn't get the appointment. I have found a PT and a CBT who are familiar with FND, just not a neurologist or any other specialist. It has been suggested I see a neuro specializing in movement disorders. If my neurologist isn't willing to do the research to bring herself up to speed on FND, that will be my next step. I don't think I can take another rejection from Mayo. That caused me a huge amount of stress and it is very important for me to keep as much stress out of my life.
The Mayo Clinic was of no help to me. Before I went there, I made sure they were in network. The day before I was scheduled to go, they told me the doctor they scheduled me with was not in network and I should reschedule. Having not been able to walk after more that a year, and already pre-paid for my hotel, I went. When I got there, the doctors didn't do any of their own analysis, within a couple of minutes and no testing, they were sure it was functional gait disorder and I would have to enter a course to teach me to walk again, but would have to come back.... Left without a choice or much hope, I went home and waited for my next appointment. In the month interim, my insurance company sent a letter that said it was not in network facility. After responding with who and when I was told it was approved facility, my insurance company reviewed my appeal and decided it wasn't medically necessary to be seen there, eventhough 6 other in network doctors that I had to see based on my insurance companies approved network, agreed I should go there. But apparently the insurance company knows better. I was denied not only coverage, but also the future appointment to supposedly teach me to walk again. I was left with a $12,000 bill and no help. 6 years later, I'm still making payments and still can't without aid. With no help from anyone, I gave up. Mayo is in it for the money as much as any other facility. They are better served having customers than helping people, there's more money in it. I did learn one very important lesson however when I was there; in looking around at how much suffering was going on around me, I learned that things can always be worse....
I am so sorry that you have to deal with this. If Mayo isn't an option for you, perhaps Mass. Gen would be an option. massgeneral.org/neurology/t.... Good luck in your search.
Great news that obviously gives new hope, and yes, you are right, sometimes reading posts on this platform might create the wrong impression - although there usually hope hidden among the many words posted.
I am in the UK, so no Mayo Clinic, but what you have outlined offers an insight to what can be achieved by many with the right guidance - Pain Management.
As you have pointed out, the pain is still there (and occasionally overwhelming), but a degree of management can usually be achieved at different levels for different sufferers.
Good pain management is often about attitude of mind and approach, and let's face it, if there is one thing that can negatively influence thinking it's pain.
Pain management clinics operate throughout the UK with varied results, but whichever are connected with it needs to be with the right frame of mind and outlook. If you don't want something to work and you're self righteously belligerent about it, then guess what, it wont.
Agreed, there are different levels of expertise in different locations, so there might be a degree of trial & error in finding the right resource, but don't give up.
I connected with one that changed (saved?) my life in 2017 but it wasn't in the city where I lived. It took travel and determination but was worth every ounce of effort. And strangely enough, the facility I connected with? I've seen it criticised on this platform. You can lead a horse to water etc.
Again, great reflection on your daughters story, and I'm sure like many that will read it we wish you all well for the future.
Such good news for you. My daughter struggled to walk 2 weeks ago. Today I watched her 'play' racquetball. I put play in quotes because it was more like trying not get hit by a ball along with 4 other girls who'd never played before. Do not give up. One thing Mayo has stressed is the the importance of a schedule, deep breathing, daily exercise, and doing everything in moderation. Here's to hoping that more people can find the help that they need to get their lives back.
As to the 'play' concept, I have a sweet physio and when I get wobbly while trying a movement she reminds me that if it's pretty it isn't therapy. So keep those giraffes moving.
Try curable.com for pain it’s a mind body application for pain recommended to me by Stanford pain management uses the mind body approach to help turn down pain receptors
So happy you received help for your daughter, I have chronic back pain, normal pain clinics do help, but you do have to go with an open mind. Watching Arthur's Amazing Transformation helped me the most, here was someone who obviously had reason for pain and disability, and it's not about yoga, I used other forms of exercise. I've been fortunate to go to 2 pain clinics, one 30 yrs ago that taught me how to do things, the other one 5 yrs ago that gave me hope that I can get rid of the pain. I still have pain, but barely take medications. Thats one reason why I struggle with FND, there doesn't seem to be a reason. All the best. Take care.
Your post gives me hope! my 9 year old is in the path to be diagnosed with FND (still waiting on the results, but this explains everything). We are in Canada, so don’t really have access to mayo clinic, but it is really good to read this. Your daughter”s syntoms are very similar to my daughter’s. It started as fatigue eventually she had excruciating pain in her legs (spasm every 5 minutes) and leg weekness (can’t walk anymore). Couldn’t really rely on doctors so far, so we are taking things in our hands. She has psychologist appointments, we are starting on a detox diet, juicing, and the thing that helped the most, acupunture. Our acupunturis did an amazing job with her pain and muscle weekness, she comes home from the sessions walking and pain free. Doesn’t lest long, but it lasts more and more every session. One day she managed to walk for 2 days after the session. (unfortunately it closed because of covid, so the next session is january). Thanks for sharing, would love to connect so we can talk more about this!
Dear CSPIN, I hope you and your daughter are doing well. I think of you both often. As a fellow mom, I know how hard it is to watch your child struggle. With our girls being so young, I can't help but struggle with the feelings of sadness at the life my daughter should have had but now with FND everything has shifted. My daughter is doing well with her walking and mobility, but the chronic pain is what she struggles with the most. I wish we could find a medication that helped with that. How is your daughter doing?
Wow! I know how scary this is. I’m sorry to hear that your young daughter has to deal with this. Don’t give up hope. One thing that seems to be effective is the pain clinic. Perhaps you could contact Mayo’s pain clinic to see if they can recommend a Canadian pain clinic. It would make sense that they’d know of one. My daughter liked the “cupping’ aspect to acupuncture. I hope your daughter continues to see improvement with it.
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