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Newly diagnosed and kinda scared and down...
2 Replies
Kristina17 - September 7

Hi all,
I'm 24 and have had chronic pain which has gradually worsened over the last 8 years. It has particularly gotten worse over the last year though, now involving my wrists, ankles, shoulders, arms, neck, back, etc. I have always felt extra sensitive to touch with the slightest hit on my skin hurting and smallest knock bruising me. I have been shaken though by this new diagnosis and feel the need to know everything I can about it and how it will effect me. I'm a piano player and really worry that this syndrome will effect me in so many ways that my quality of life will deteriorate. I have many other medical issues as well and have also got Asperger's syndrome, a type of Autism (which I found out 12 months ago). What advice and help can people give me? Have just seen a rheumatologist and am going for many more tests this week to make sure that I don't have any other underlying condition.


Fantod - September 8

Hello Kristina17 - Welcome to the group. Most people feel overwhelmed with a diagnosis of Fibromyalgia (FMS). It sounds like your rheumotologist is on top of things by running addiitonal tests to be sure nothing else is going on. There is a lot of good information on this website so you have come to right place for help.

I'm going to give you a brief overview of FMS so you will have a better idea of what it is all about. Take some time to throughly read all of the information in the blue boxes on the lefthand side of this page. You will feel like you have some control over your situation if you are knowledgable about FMS.

FMS is a disorder of the central nervous system that causes wide spread chronic pain. The mechanism that causes it is not understood. There are quite a few associated conditions that go with it as well. Symptoms and severity vary from person to person. There is no cure, but it can be managed. FMS is recognised by the National Arthitis Foundation and the Center for Disease Control.

A crucial part of the treatment for FMS is getting restorative sleep. FMS causes short bursts of intense brain activity during the deep sleep cycle. Your muscles need deep sleep in order to repair themselves from the days actvities. Nonrestorative sleep means higher levels of pain. Amitriptyline is usually prescribed for sleep issues.

Part of living with FMS is learning to pace yourself. Break chores or activities into smaller increments. Be grateful for anything that you can do rather than focusing on your limitations. Overextending yourself will result in a payback that can take days or even weeks to make a recovery. It is just not worth it. Learn to say "no", mean it and not feel guilty about it.

Only certain classes of prescribed medication work for FMS. OTC remedies do not. The drugs commononly prescribed are Cymbalata, Lyrica or Savella. I use Cymbalata and have pretty good results. Quite a few people on this board use Lyrica. The most common complaint seems to be rapid weight gain and swelling of hands and feet. Savella is new to the US market this year. It has been used in Europe for decades with good results. Most rheumotologists have 2 week sample packs for patients to try before they incurr the expense of a prescription. It takes time and a lot of tinkering to find the right combination of medication and doseage to get good results.

Being sensitive to touch or pressure from clothing is called allydonia. It is common among people with FMS. I have it myself and at this particular moment I would like to tear off my bra and burn it. I am very sensitive to touch and also bruise very easily. It can be difficult for other people to appreciate how sensitive I am to even a hug.

You should watch your diet and try to eat smaller high protein meals through out the day. This will keep your blood sugar level and help fight fatigue. Stay away from eating or drinking anything with an artifical sweetner (including Splenda), lunchmeat (nitrates) and deep fried foods. These items may increase your pain level. If you need a sweetner for coffee, buy Truvia. It is made from the Stevia plant and can be found right along side the other articial sweetners.

I can't comment on how FMS may affect your ability to play the piano. It affects everyone differently. Hopefully, a medication like Cymbalta will alleviate your symptoms to a degree that will allow you to continue playing.

If you have further questions or concerns, please ask. We are all here to help and listen. Take care.


llcsmom - September 9

I can give you some insight from a mother's perspective on how fibromyalgia and now a new diagnosis of POTS has affected my 13 year old daughter and her piano/violin playing.

Some of the positives are:
1.She was not an athlete or sports participant when the fibro struck at age 10. Therefore, she has pretty much been able to continue her main activity and interest of being a violinist and some piano. (She is more accomplished at violin, and now has taken up composing and theory on keyboard vs. traditional piano lessons).
2. She can sit alot of the time to play violin--at home while practicing, at orchestra, etc. She prefers to sit most of the time due to the pain and also due to the symptoms of POTS--feels like she will pass out and alot of other symptoms that make it hard for her to stand more than 15-20 minutes.
3. Playing music can sometimes elevate her mood and distract her from her symptoms.
4. She has increased confidence at school since she is a high level violin player--even if she misses alot of school, her orchestra teacher "gets it" and understands that she can still be the concertnmaster despite her disorders.

Some negatives are:
1. She has an occasional "bad" lesson due to her symptoms, and her teacher will push her, which frustrates my daughter. I think it is good for her to have someone in her life (besides me) that pushes her a little when she is down.
2. The pain, fatigue, dizziness, etc. disrupts her practice and lessons.
3. Hand tremors make it difficult to play, but luckily, she doesn't get those often.

Anyways, just wanted to touch on the question you had regarding piano. Also, if you have any neurological symptoms like my daughter has, I encourage you, if you are able to, to see a neurologist.
Everyone is different, and I'm sure everyday is different in terms of how mild or severe your symptoms are. Have patience when you are having a bad day, and enjoy your increased abilities when you are having a good day. To be able to play music is a gift for you and the people who you play for.

Good luck,



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