Fibromyalgia
For the past few years my 25 year old daughter has been experiencing aches and pains, chronic fatigue, headaches/migraines, periodic low-grade temperatures with vomiting. She complains that no matter how long she sleeps, she never feels rested. Some days it feels like all she can do is get dressed in the morning.
She's living abroad so her access to and experience with national health care hasn't been too helpful to date. It would be easier if she knew what to ask for or what kind of doctor to see. She was home in Dec/Jan and had a whole battery of tests, all of which came back normal. Based on some research I've done I'm beginning to think she is struggling with fibromyalgia. If so, I understand that this is difficult to diagnose, and it's only been in the last 10 years or so that doctors recognize it as a real disease (as opposed to being symptoms of depression or female neurosis).
I'm wondering if others with this condition could offer suggestions that I could pass on to her. Are there medications you find helpful? Foods to either eat or abstain from? Books to read? Twenty-five seems way too young to be restricting one's social life and work opportunities due to ill health.
Thank you.
Parent Replies
HI, Is she in the UK? I recently read that lyme disease is becoming more common there but most doctors do not think about it.
Long retired NHS practitioner
I'm so sorry. As a person who has had similar issues for years and who has only recently gotten some relief, I have some suggestions. Check with the Center for Complex Diseases in Mt. View. https://centerforcomplexdiseases.business.site/ The docs have extensive experience with illnesses that are real and debilitating but don't show up in the normal battery of tests. It's worth asking if they will do a phone consult if your daughter is not able to come in for an appointment. She may also see if her doctors can test for SIBO (small intestine bacterial overgrowth), Postural Orthostatic Intolerance, MTHFR mutation and Mast Cell Activation Syndrome. I personally have gotten a lot of relief from B12 and folate supplements and allergy and asthma medications (despite not having normal allergy and asthma symptoms), so she might want to try Claritan and Allegra (both over-the-counter) and Singulair (prescription). The med that has helped me the most is cromolyn sodium (prescription), but I know others with similar symptoms who didn't improve on it. I also know people who have responded well to low-dose naltrexone, though it hasn't done much for me. It takes a lot of experimentation to find the right combination; it is best to start at a very low dose of meds and supplements & to very slowly increase the dose, paying close attention to if it makes you better or worse. Fibromyalgia and related diseases seem to have a lot of subsets and what works for one person may not work for another. Another thing about these medications is that these are off-label uses, which might be problematic for some doctors, especially in a national health system. Also, if not covered by insurance, the medications can be very, very expensive, and the supplements add up too.
Unrefreshing sleep is a hallmark of fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). A sleep study could be revealing & CPAP machine may help.
A gluten-free, dairy-free, low FODMAP (https://www.monashfodmap.com), low-histamine, low-sulfur diet works for me. I probably got the most immediate benefit from avoiding gluten & high-sulfur foods but again, experimenting is key. Some people do better as vegans; I did worse. Experiment with avoiding caffeine.
Pacing activities can help - check out http://www.cfidsselfhelp.org/ I found having a fitbit w heartrate monitor helps -- I pay attention to my heartrate & when it's too high, that's a signal to me to stop & rest. http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-ra…. Another helpful blog is https://www.healthrising.org/ -- lots of good info about research. Many people like the forum Phoenix Rising, https://phoenixrising.me/, though I find it overwhelming.
Finally, I found books by Toni Bernhard helpful. Bernhard was the dean of students at UC Davis law school when she got CFS/ME. She's very real about what it's like to have this kind of illness & offers suggestions drawn from Buddhism on how to cope.
Again, I'm sorry your daughter is suffering. This kind of illness takes lots of work and self-advocacy to manage, & those are hard to muster when you're ill. It can be very discouraging, but I hope that she is able to find some ways to improve her well-being. I wish you both the best of luck.
I had similar symptoms for a while (except for vomiting--I had nausea & abdominal pains). Also problems with brain fog, diagnosed as ADHD. I felt constantly exhausted no matter what I did. Tried several medications with no results, and diet made no difference. I was already on depression medication and couldn't figure out what was wrong.
The doctor finally changed my depression medication and surprise! I sleep well and wake feeling rested. I'm starting to work again.
Not saying that's what she has--but depression is a great mimicking disease. Might be worth exploring.
She would need to see a rheumatologist for the diagnosis, it is a clinical diagnosis based on a physical exam (none of the lab tests will show fibromyalgia). More than half of people with fibromyalgia have major depression, possibly because the condition is so debilitating, or possibly because these two conditions are related in some other way. Therapy would be very useful for her in my opinion. Sometimes depression and/or history of trauma (emotional or physical) can look like fibromyalgia on the surface, so that would be one reason to explore therapy, the other reason would be to help with coping if she does indeed have this diagnosis. Daily aerobic exercise helps with symptoms of fibromyalgia. Sometimes SSRIs are used succesfully (e.g. prozac).
10-15 years ago (~age 30) I slowly got chronic fatigue where I just didn't have any energy even after sleeping a lot. It is soooo frustrating and hard to treat and doctors don't know what to do about it. Eventually I came across research on gut health and in particular feeding your body with Prebiotics (such as unmodified potato starch) along with high quality probiotics as well as other action to reduce inflammation (removing irritating foods etc) and managing stress (super hard for me). Ultimately this made a huge difference and I am 75% back to normal for my energy. But it took 10 years to work it all out with so much trial and error. I know it probably sounds wacky but look into it and see if it makes a difference for your daughter.
Fibro is still mostly an exclusion diagnosis, so she should be checked for Rhematoid Arthritis, Lyme, Lupus, hypothryoidism and everything else that fits the symptoms.
Once she's sure in her diagnosis run and get her What your Dr. Won't Tell You about Fibromyalgia by Dr. St Amand. It describes a treatment that reverses the symptoms for fibromyalgia. If she was over here I'd recommend she see Dr. Congdon in Mill Valley/SF (if you google her her website has a video documentary about the protocol.) I've been on the protocol and it's life changing. Feel free to contact me, and I'm happy to talk about it. Yes 25 is young to have to be dealing with this, I was diagnosed later, but definitely had it at in my early twenties. I wish I'd known about the protocol then.
In the meantime the things that helped me before I discovered the protocol were Chi Gung, and other forms of gentle exercise, though I love water aerobics and yoga Chi gung made the most difference. Taking magnesium supplements helps with aching and cramping. In terms of diet, many people who have fibro also have reactive hypoglycemia, so restricting carbs and managing blood sugar can help her symptoms enormously. The symptoms for fibro and reactice hypoglycemia overlap, and can make each other worse, not to mention making the already difficult task of finding out what is working for you much harder.
Your poor girl. So sorry. Before you jump to fibromyalgia, I would also consider her environment. I have a friend who had many of the same symptoms and discovered her home had a toxic mold problem. I would have her your daughter see if she can find out if her home is mold free. If there's any possibility of mold, she should move and see if she starts to improve somewhat. Often symptoms get better once you get in a cleaner environment, but she may need some special tests/prescriptions to help clear her body of the mold as well in order to get her energy back and start feeling better. Definitely look into mold though. Here's a great read to get started on researching the possibility of that--good luck!
https://goop.com/wellness/health/how-to-identify-hidden-mold-toxicity-a…