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Mo - August 19

My 17 year old daughter has preliminarily been diagnosed with Fibromylgia. Initially doctors thought she had Pleurisy, then the pain under her left breast was attributed to 'Growing Pains'. Now she recently suffers from headaches, nausea, vomiting, breathing problems and general fatigue. I am reluctant to have her put on medication for lengthy periods, can anyone tell me what alternative therapies they have used and are working? I have personally had very positive results with supplements for anxiety as against conventional medicines. I will appreciate your help.

 

Fantod - August 19

Mo - I am sorry to hear about your situation. No parent wants a child to be in a situation like this. Fibromyalgia can be very challenging to manange. I'm going to give you a crash course on it and add some additional comments about alternative therapy.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. FMS is recognized by the National Arthritis Foundation, the World Health Organization and the Centers for Disease Control. Over the counter remedies do not work for the type of pain associated with FMS. You would only be damaging your daughter's liver and stomach by relying on Aleve or Tylenol.

It is normal to be in denial after this diagnosis. There is a grieving process that goes along with learning to live with a chronic illness like FMS. If you and/or your daughter find that you can not work your way out of it in a reasonable amount of time, please consider seeing a counselor for extra support. Many of us, me included see someone and find it extremely helpful. You should try and find someone who has experience in treating chronic illness patients.

This website has some of the most comprehensive information about FMS on the Internet. Take some time to read through all of the information contained in the blue boxes on the left-hand side of the website page. There is excellent concise information on FMS and the many "perks" that can be associated with it. The “perks” include Restless Leg Syndrome, Raynauds, GERD and a host of other conditions. You should also read through the posts to learn about what other people experience and how they deal with it. I think that the key is to become educated as possible about FMS. Knowledge is power.

If you don't want to share this website with your husband, family and friends to get them on board, there are a couple of other options. Go to the National Arthritis Foundation web site and use the "search" function to find the information on FMS. Send the link to friends and family. Go online to Amazon and purchase "Fibromyalgia for Dummies." It will have good basic information like any of the other books in the Dummies series. Read it yourself and pass it around.

It is very common for people with FMS to have friends and family who refuse to accept the limitations placed on a person who has this syndrome. Pain is subjective. For some people, if they can not see it, the problem must not exist. She is going to have to learn to ask for help, stand her ground, say 'No" and mean it and not feel guilty about it. And, most importantly, be grateful for everything that she can do as opposed to dwelling on the losses.

A rheumatologist is the doctor best suited to help you manage your daughter's symptoms. There are now three prescribed medications to treat the pain of FMS. Lyrica is one them. The most common complaint about Lyrica seems to be rapid weight gain. Unfortunately, many rheumatologists are not proactive about changing medication when this problem becomes apparent. The second option is Cymbalata which is an antidepressant. Cymbalata addresses both the pain and depression that usually accompanies FMS. I use that myself and have had good results. The newest medication has been used in Europe for decades. Savella (also known as Milnacipran)was approved for use in the USA by the FDA last year. Many people seem to have good results with it. It takes time and a lot of tinkering to find the right dosage and medications to make the patient feel more comfortable. You might want to consider finding a pain specialist with an interest in FMS. I have a rheumatologist and a pain specialist. You can call your local hospital physician referral service and see if they can recommend someone.

Has your daughter been tested for a vitamin D deficiency? This is done with a simple blood test. Many people with FMS are deficient in vitamin D. I'd also like to suggest that she be tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be gluten sensitive without having Celiac Disease. Either of these issues can also cause widespread pain.

One of the reasons she is so sore and tired is a lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the day’s activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Restoring some level of deep sleep is a crucial part of treating FMS. She should be on a sleep aid like Amitriptyline to help with this issue.

Some people with FMS are very sensitive to touch. This is called “Allydonia.” Pressure from clothing, bra straps, watchbands and anything that touches the skin may be uncomfortable. There is no solution to this issue other than to find clothing that feels comfortable. I have Allydonia but some days I am less sensitive and can wear whatever I want. Other days, I stand in my closet wishing that my nightdress was appropriate day wear out in public. Case in point, it is 2PM and I am still not dressed today.

With regards to diet, if you use anything containing an artificial sweetener, get rid of it. If your daughter requires a sweetener, use something made from the nontoxic Stevia plant. Truvia and Sun Crystals can be found in the grocery store alongside the other sweetners. Avoid deep fried food, and lunchmeat (nitrates) as they will probably increase her pain level too.

The key to living with FMS is learning to pace yourself. If you overdo anything, the payback can take days or even weeks to get over. You can still do many of the same things but you have to think outside the box. Break tasks down into more manageable increments. Get plenty of rest, watch your diet and eat high protein to prevent huge energy swings. If I have an event that I want to attend, I "save up" energy by reducing other activities. Even then, I may have to curtail my participation. But, in my estimation, something is better than nothing.

Not all doctors/rheumatologists are created equal. If you want a second opinion, be sure to take a copy of your medical record and current tests with you to save time and money. You can go to the National Fibromyalgia Association website to see a list of fibro-friendly doctors in your area.

I have tried some alternative treatments as I have mutiple chemical sensitivies to medication. Having had this syndrome for over three years, I speak from experience. You should allow the doctors to put her on prescribed medication to lessen and control her symptoms. I currently see aa functional medicine specialist. They use a combination of homeopathic and conventional medicine as a treatment protocol. A key point to remember is that the longer a chronic pain cycle continues, the harder it becomes to manage or stop. Once things are under control (and that is going to take time and a lot of tinkering), I would consider adding some alternative therapies in addition to medication. Perhaps the medication can be cut down or possibly eliminated but that will depend on her individual situation. We all have different symptoms and levels of severity.

Accupunture is an option - I tried it for several months until I could no longer afford it. Initally, my pain levels were much worse which is a typical response. Then they improved but not consistently and for very long. There are some homeopathic remedies that may be helpful. Malic Acid for cramping and twitching, Calms Forte and Melatonin for sleep and Curamin for breakthrough pain. I've also used a TENS unit, been in PT and use a nutritionist. All of it has been helpful.

But, given the amount of stress that FMS places on an individual affecting multiple systems in the body, medication has been the most helpful on a consistent basis. Do I enjoy the array and copious amount of medication that I ingest every day - no. Is my life (completely disabled due to FMS) more bearable and do I enjoy a higher level of function - yes. Let your daughter have some level of comfort during the final years of high school while you work on this problem together.

If you are interested in exercise, Tai Chi or water areobics for arthitics are both good choices. The latter must be a class for arthitics as a regular water areobics class would be far too intense for her to manage.

And finally, you are not alone. This is a great site for support, information, to ask questions and just vent. I hope that my comments are helpful to you in some way. Take care and God Bless.

 

Mo - August 20

Hi Fantod, thank you so much for the info which is so useful. I am trying to learn as much as I can about the condition and intend to get a second opinion. Thank you for the support, good luck and Good Bless.

 

Fantod - August 20

Mo - I am so glad that my comments were helpful. Please keep in touch and let us know how things are going. This is a tough syndrome to manage not only for the patient but the family members too. Take care and enjoy the weekend.

 

llcsmom - September 22

Hi Mo,

I haven't posted here in ages. Thought I would check in and saw your post.Your daughter has alot of simiilar issues as mine does. My daughter is now 14 and when she was 11 was diagnosed with fibro. Then a year and a half ago, she started having more neurological and GI symptoms. After numerous tests, doctors etc. she was diagnosed with a problem with her autonomic system--dysautonomia and specifically POTS--it is usually diagnosed by a neurologist or cardiologist with a tilt table test. It is a relatively new diagnosis--since the early 1990's so many doctors have barely heard about it. The autonomic nervous system controls many systems--breathing, heart rate, digestion, urination,etc.

I am not saying I think your daughter may have POTS (postural orthostatic tachycardia syndrome), I am just saying that you may want to keep track of her "fibro" symptoms and any other symptoms, and if you are able to, have her see a doctor who is knowledgeable about dysautonomia. Some in this specialized field of autonomic neurologists, feel that dysautonomia comes with fibro/CFS (chronic fatigue) symptoms. ie, it is felt that it is truly dysautonomia and that some patients have been misdiagnosed with other chronic illnesses. She is in the prime age for POTS and most specialists feel that most patients eventually "outgrow" dysautonomia.

You can find out more about dysautonomia and POTS on the internet. You may even run across my daughter's support group on youtube teenpotsyproductions. There is alot of increased awareness and support out there, especially just in the last 2 years.
We have tried many alternative treatments for my daughter over the past 4 years, and some have been mildly helpful at best.
Take care!

 

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