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Just Diagnosed
9 Replies
crazykath - November 17

Hi everyone,
I was just diagnosed last Monday with Fibro. I was seeing a Neurologist. I'm not sure if that is my only problem though. And I'm afraid I don't trust this Dr. When you have a EEG aren't they supposed to at least do your whole back if your complaining of pain from the neck down? It hurts to wear clothes, and do anything including brush my teeth because I start hurting and get spasms really bad between my shoulder blades. They do have me on a few things though one of which is Neurontin, which I consider my miracle drug. But any how does anyone know the answer to my ? about EEGs?

 

crazykath - November 17

I forgot to mention that Ive had this for going on 6 years. In 2004 I walked out of my apartment building and slipped on some ice and landed on the top of my head. They though I broke my neck.

 

Canada17 - November 17

An EEG records the firing of neurons in the brain; which can show the Neurologist why you have pain in certain areas of your body, anywhere from your back to your toes.

Also, an injury at the very top of your spine can cause pain throughout your entire body. It's part of the reason there is a strong link between whiplash and FM.

 

crazykath - November 17

They only tested the left side of my body. I'm the one that requested the test. But it doesn't make sense that they would only test the left side.

Thank you for your response Canada17.

 

axxie - November 17

The EEG shows patterns of normal or abnormal brain electrical activity. Some abnormal patterns may occur with a number of different conditions, i.e., fibromyalgia and not just seizures. For example, certain types of waves may be seen after head trauma, stroke, brain tumor, or seizures. A common example of this type is called "slowing," in which the rhythm of the brain waves is slower than would be expected for the patient's age and level of alertness.

Your mind can only focus on data from one brain at a time, we can switch from one side to the other very quickly, (if intact) because of the brain injury, the most efficient way is to do only the left side of the brain. Because the left brain, takes control, choosing logic, reasoning and details over imagination, holistic thinking and artistic talent.

 

Fantod - November 19

Hello crazykath and welcome to the forum.

If you have issues with how the neurologist conducted the EEG than you should tell him. There is nothing wrong with asking for a clear explanation of how the test was conducted and whether it was necessary or not to do your entire back.

Personally, I am more concerned with your diagnosis of Fibromyalgia (FMS). You don't say if you have been given an medication for FMS. the doctor best suited to treat FMS is a rheumotologist. Not all rheumotologists are created equal. There are still many doctors out there who do not believe in FMS or are not up to date with treatment protocols. You should call your local hospital physician referral service and ask them for a rheumotologist and/or a pain specialist (I have both) with an interest in FMS. Or you can go online to the National Fibromyalgia Association website and register. Then you can see a list of fibro-friendly healthcare providers in your area.

Fibromyalgia is a disorder of the central nervous sustem that causes widepread chronic pain. The mechanism that causes it is not understood. There is no cure, but it can be managed with prescription medication. FMS is recognised by the National Arthitis Foundation and the Center for Disease Control.

There are now three prescibed drugs to treat FMS. They are Cymbalata, Lyrica and Savella. Cymabalata is an antidepressant that addresses both the pain and depression that usually accompanies FMS. I use it myself and have had good results. You may have seen television ads for Lyrica. The primary complaint seems to be rapid weight gain. Savella is new to the US market this year. It has been used in Europe for decades. People either seem to do well with it or cannot tolerate it at all.

FMS disrupts the deep sleep cycle with short bursts of high intensity brain waves. 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 sleep issues associated with FMS.

It is going to take time and a lot of tinkering to find the right combination of medication and doseage to make you feel more comfortble. As a rule of thumb, you should allow at least two weeks and even up to a month before you start feeling some relief.

YOu should also be tested for a Vitamin D deficiency which is common among people with FMS. This is done with bloodwork. Another option would be checking for gluten sensitivity. The most accurate test is done using a stool sample. Either of these issues will also cause widespread pain.

Diet is very important with FMS. Deep fried foods, lunchmeat (nitrates) and anything containing an srtifical sweetnwer (including Splenda) should be avoided. All of these items will probably incease your pain level. To replace an artifical sweetner, look for Truvia or Sun Crystals in the grocery store. They are made with the nontoxic Stevia plant.

I also have problems with clothing which is called allydonia. Many people with FMS have this problem which can be mildly annoying or extremely painful. Mine seems to come and go. I'm having problems with it at the moment. Any pressure against my skin is painful so my sleep is more disrupted than usual and I am only getting dressed when absolutely necessary.

You should ask your doctor about giving you the Flector Pain patch to help manage localized pain like between your shoulder blades. The Flector patch only works where it is applied and does not get you high. I have degenerative disc disease and find that is very effective to manage pain in a specific area.

I hope that some of my comments are helpful to you. Take care and God Bless.

 

Canada17 - November 19

Fantod makes some very good points.

My doctor has given me Vitamin D, coenzyme 10, calcium and magnesium, and whey protein to take.

She has also prescribed me a mild sleep aid until the sleep study results are in. I have to break the pill in half and then in half again!

Watching what you eat and drink is also very important. I've given up an liquid that says "cocktail", "drink", or "punch" because as a rule these have sugar added to them. Citrus fruits can be problematic but melons are supposed to be very good for us. As a rule I stay away from anything that has preservatives, nitrites/nitrates, anything artificial, yeast, white flour, white sugar, tomatoes, and potatoes. You'll have to test which foods affect you but I cannot stress enough how closely linked our symptoms are with what we put in our body.

A non-prescription alternative to the Flector Pain patches is a gel called Voltaren. It is also good for joints as the patches have a hard time staying put on moving parts. My pharmacist also told me not to cut the patches as they can leak and cause problems. My doctor tells meVoltaren also comes in a comes in a concentrated liquid form by prescription, but it quite expensive.

Avoid stress whenever possible! If you feel yourself getting worked up about something, you are better off to take a few minutes to breathe than exacerbate your pain.

And remember, you are not alone. : )

 

Canada17 - November 19

I forgot to mention, my doctor said that chlorine can aggravate our pain, so I've also given up tap water.

 

crazykath - November 21

Thank you Fantod, Axxie and Canada. I appreciate everything you all have said.
I was originally diagnosed with RSD. The Neurologist that I just saw told me that I don't have that because I don't have any discolored skin. So she said I have FMS without doing the 18 point test. That's another reason I'm just not sure about her.
I did have my family doctor check my Vitamin D, and I am low on that. She put me on 4000 iu's a day but I ended up being allergic to the bonding agent that they had in the pill. So she had to put me on the weekly gel pill which is 50,000 iu's. As far as other medications that I'm on here is a partial list. Neurontin 900mg3x a day, Tizanidine 8mg3x a day, Cymbalta 90mg1x a day, Budeprion 150mg2x a day, Oxycontin 40mg3x a day, Oxycodone 15mg2x a day, Trazodone 100mg1x a day and the Lidoderm Patch. And I still have horrible pain and spasming between my shoulder blades and my neck 24/7. Oh, I do find that my heating pad works with the spasming here and there. But you can't live on that. I gotta go lay down, talk to you all later.

 

lorieholtz - November 24

crazykath,
that's alot of pain meds, oxycotin and oxycodone i am quite surprised that a dr would put you on both of these at the same time. as far as the eeg omg what a painful test i could not tolerate it and after i had it done i was completely down for 2wks after the test.for myself i would like to get more info on that new med Savella..i just wish i could find a med that my body can tolerate. this seems to be quite a problem for myself. when u talk about your skin being sensative i can no longer tolerate wearing a bra it so hurts my skin. fantod i go to my dr tomorrow and i'm going to ask about this patch flector and ty for your suggestion about this, but i also see where canada says you can get this in liquid form... i wonder which is best.
as always ty for all this info
lorie

 

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