Does it sound like Fibromyalgia?
CindyinFl - Oct 20th, 2009 2:19 PM
[ Original Post ]

Hi, I have been reading about fibro and found your board. Have not seen a doctor in over a year and the last time he seemed to think it is in my head and pretty much dismissed it.

No health insurance, looking for a new doc. Symptoms have gotten worse since last year and seemed to have crept up in the last several years. I am a female in my mid 40’s; blood pressure runs slightly low, no diabetes.

Worst pain is usually lower back & headaches. All sorts of headaches but mostly hurt at the base of my skull. I cannot stay in any one position for too long (about 15 minutes), laying down, sitting or standing.

Feel very stiff. Other pain I feel is my shoulders, neck, feet, elbows, wrist, all around my upper, mostly outer thighs.

Painful headaches from perfume, esp. cheap stuff. Headaches from smells that did not bother me before, tar, gas, pretty much anything with a strong chemical smell. My whole head feels like it is in a vice.

I have a hard time finding the words I want to use, simple stuff. I have a lot of the “now, what was I going to do.” The worst though is trouble focusing. That is the symptom that is bothering me the most.

• Fatigue- never seem to get enough sleep, trouble falling/staying asleep
• Weakness & coordination
• Perspiration/get a flush like feeling a lot
• Tingling – feet, hands, a bit in arms in legs
• Bladder – I used to be able to hold it for awhile, now I feel the need to go often and usually only a small amount.
• Mild dizziness
• Eyes seem fuzzy. Eye doc says I do not need glasses though. Hubby drives at night. Sometimes my eyes hurt, even when relaxing. Almost like a bruised feeling. Eyes also seem to hurt in bright light.
• Bruise easy
• Tender points – if some of those points are probed I get like a pinchy feeling that often radiates pain throughout that general area. Sometimes feels bruised. My loved ones cannot even hug me or lay their heads on my shoulder without causing me pain. It varies, but about 10-14 of the tender points hurt. Sometimes the pain last other times it goes away quickly.
• Restless legs – my hubby has been telling me for about a year that he thinks I have it. I do not know much about it tho.
• Depression – Hubby says that I will do what needs to be done but no interest in anything else. Luckily I have a very loving and supportive husband. This makes me feel even worst because I know I am not much of a wife lately yet he gives so much.

Sorry so long. I know none of you can diagnose me, but maybe can give some personal input. I know I need to see the doc, but am one of those people who always find a reason to avoid going to the doc.

Comment


 

mbfibroGal - Oct 20th, 2009 6:27 PM

CindyinFl,

I too just posted out here to see if I might have Fibro also. My Dr's have been telling me that it is all in my head now for 3-yrs and that I need to learn how to "de-stress." Meanwhile the pain is getting worse and I have no energy to play with my 4yr old daughter. :(

My general Dr, chiropractor and PT's are all telling me that I do have fibro, but cannot seem to get any Rheumatologist to do anything about it.

I feel your pain. I have been looking in to doing more of the herbal & vitamins. As soon as I find a good reference, I can let you know if you are interested. I figured that if the Dr's were not going to do anything then I would take charge and treat myself. :)

Keep hoping and faith in your heart!


Fantod - Oct 20th, 2009 8:24 PM

Hello CindyinFL - Welcome to the board!

Based on your description, it is possible that you have Fibromyalgia (FMS). But, there are other things that mimic it so you need to see a rheumotologist for a firm diagnosis.

I'm going to start with the basics so you have a better understanding about what may be going on with your body.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. It is recognised by the National Arthitis Foundation and the Center for Disease Control. There is no cure but it can be managed using prescribed medication. Only certain classes of prescribed medication work for FMS. OTC remedies do not.

The primary doctor to treat FMS is a rheumotologist. You can also use a pain management specialist (I have both). If you need a fibro-friendly rheumy there are a couple of options. Call your local hospital physician referral service and ask them for a rheumotologist and/or a pain specialist with an interest in FMS. You can also go to the National Fibromyalgia Association website and register. Then you can see a list of fibro-friendly health care professionals in your area. If you have recent bloodwork or any other tests, get copies and take them with you to the appointment.

There are still a lot of doctors out there that think FMS is a figment of our collective imaginations. You will probably have the misfortune to run into one or more of them as we all have over time. Take some time to read all of the information in the blue boxes on the lefthand side of this page. Knowledge is power. You need to be your own best advocate when it comes to managing and understanding FMs and the "perks" that come with it. Incidentally, if you look under "Associated Conditons" in the blue boxes on the lefthand side of this page you will see a section on restless legs.

There are now three main prescribed medications used to treat FMS. Cymbalata is a popular choice as it addresses both the chronic pain and depression that usually accompanies FMS. Lyrica is advertised on TV all of the time. The most common complaint seems to be rapid weight gain. The newest medication in the FMS arsenal is Savella. It has been used in Europe for decades and was approved for use in the US this year. I am not aware of any major side effects associated with Savella. Most rheumotologists seem to have two week trial packs of Savella for patients to try.

It does take time and a lot of tinkering to find the right combination of medication and dose to be effective. All of us are affected by different symptoms so there is not a single drug regimen that will work for everyone across the board. You would need to allow at least two weeks and possibly a month to see if any prescribed medication is going to be effective.

I know that you are exhausted. 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. Amitriptyline is usually prescribed for the sleep issues associated with FMS. Rest is very important when managing FMS. You must respect your limits or the payback is hell.

You will need to watch your diet as some foods and additives will increase your pain levels. Deep fried foods and lunchmeat (nitrates) will probably make you feel worse. No articial sweetners (including Splenda) either. If you need a sweetner, use something like Truvia which is made from the Stevia plant. You can find it in the grocery store right next to Sweet and Low etc. Try to eat smaller, high protein meals throughout the day to keep your blood sugar from crashing.

The problem you describe with regards to touch is called "Allydonia." I have it and some days wearing clothing is a challenge. Any pressure against my skin can be terribly painful. I especially hate the blood pressure cuff - that will reduce me to tears.

And finally, not going to see a doctor about the symptoms that you have described is not a good thing. The longer a chronic pain cycle goes on, the harder it is to manage or stop. The longer you put off seeing a rheumotologist could seriously impact your ability to manage the illness.

Please keep in touch and let us know how we can help. We are all happy to answer any additional questions or just listen. Take care and God Bless.