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Myriam - April 23

Hello, I was diagnosed with Fibro on Monday. I have all the symptoms, but however, I am still sceptical about my condition. How do I know it is truly what i suffer from. I have been misdiagnosed for the past 7 years, doing tests over tests. I am afraid the treatment will not work if I am misdiagnosed again. I wake up every morning with no more feeling in my arms and hands, pain in my back, sometimes unable to walk for a bit. i have headaches and bodyaches everyday. How am I suppose to explain this to my boss, husband and family? "Sorry honey, the house is a mess, but I am too sore to clean" when he works more than me and goes to school at night? I don't know anymore, I am happy I dont have something deadly, but is it really better when what I have will never go away? Also, how do you describe it to people, is it a condition, a illness a disease?? I have bad IBS, fatigue and depression. I was planning on having a baby this coming year or so, now what? My husband is scared I won't be able to have a normal baby and then I won't be able to care for the baby, and work and take care of the home. How do you guys manage?

 

Noca - April 23

I manage with medication and therapy. I personally don't believe in having children so thats not a problem I face. You don't have to have pain/depression/fatigue control your life. There are medicines and treatments that can get you back control of your life and help you live a productive one at that too. Life is managed, not cured.

 

Fantod - April 23

Myriam - Welcome to the forum. You have definitely come to the right place to find good information and a group of very caring people.

I'm going to give you a crash course on Fibromyalgia (FMS)so that you have a better understanding of what is happening to your body.

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 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, myself included see someone and find it extremely helpful. You should try and find someone who has experience in treating chronic illness patients.

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 recognised by the National Arthitis Foundation and the Center for Disease Control. OTC remedies do not work for the type of pain associated with FMS. You would only be damaging your liver and stomach by relying on Aleve or Tylenol.

Take some time to read through all of the information contained in the blue boxes on the lefthand side of this page. There is excellent concise information on FMS and the "perks" that can be associated with it. You should also read through the posts to learn about what other people experience and how they deal with it.

FMS does run in some families but I am not aware of it causing any specific birth defects per se. Your husband should not be concerned about that aspect of FMS. I think that the key here is to become educated as possble about FMS. Knowledge is power.

If you don't want to share this site with your husband, family and friends to get them on board, there are a couple of other options. Go to the National Arthitis Foundation 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. You are going to have to learn to ask for help, stand your ground, say 'No" and mean it and not feel guilty about it. And, most importantly, be grateful for everything that you can do as opposed to dwelling on the losses.

You don't say what type of doctor diagnosed you with FMS. A rheumotologist is best suited to help you manage your symptoms. And, you don't mention anything about medication. There are now three prescribed medications to treat the pain of FMS. You have probably seen the ads on TV for Lyrica. The most common complaint about Lyrica seems to be rapid weight gain. The second option is Cymbalata which is an antidepressant which 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 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 alot of tinkering to find the right doseage and medications to make you feel more comfortable. You might want to consider finding a pain specialist with an interest in FMS. I have a rheumotologist and a pain specialist. You can call your local hospital physician referral service and see if they can recommend someone.

Have you 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 you be tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be gluten sensitive (me) without having Celiac Disease. Either of these issues can also cause widespread pain.

One of the reasons you are 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 days 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. You should be on a sleep aid like Amitriptyline to help with this issue.

In terms of diet, if you use anything containing an artifical sweetner, get rid of it. That also includes Splenda. If you require a sweetner, use something made from the nontoxic Stevia plant like Truvia or Sun Crystals which can be found right alongside the other sweetners in any decent grocery store. Avoid deep fried food, lunchmeat and wine (nitrates) as they will probably increase your 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 managable increments. Get plenty of rest, watch your diet and eat high protiein 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. I think that once you get your medication regimen sorted out, things will start to settle down. In the interim, don't be too hard on yourself. You are not alone. Let us know how we can help. Take care and God Bless.

 

Myriam - April 26

Fantod, Thank you very much for your help. My family doctor diagnosed me with FMS. She is sending me see a pain clinic. I am currently being treated for depression. I planned to start trying for a baby this summer, so we put cymbalta on the side for now. It has not been tested in pregnant women enough.
I have been tested for gluten intolerance, I have the antibodies but not celiac. I have lactose intolerance, and I am going on a supplement of vitamin D. I have also done a sleep study that show I awoke from REM sleep 42 times in one night.

It's been a week now that I know, and i feel better about it. In 7 years, I have been diagnosed with almost everything but kept being sick when promised treatment. Even though FMS can not be treated, at least I know.

 

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