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Please be understanding
6 Replies
learnFMnow - October 16

Well, if you are here and are a family member of someone with this illness, then you have taken the correct step already to support. I am proud of you and will say that many won't do this.

Just please offer your loved one all the support you can. Please realize that this illness is so unseen yet so real. It has affected my entire life in so many ways.
I am a RN. I have studied this thing in depth over the last few years since becoming ill. So with my own personal experiences and the research material I read, I know a whole lot about this. If anyone has any questions I would love to answer them.
Debra RN

 

llcsmom - October 18

Debra,

I am a nurse,(only OB and haven't "worked"for years) too, and my daughter was diagnosed 2 years ago with fibro. Her symptoms started at 10 yo. She is 13. Here is alot of info, I do appreciate your thoughts on all of this...

Needless to say, it has been three years of research (1 year of not knowing but guessing what was causing all of her symptoms.)
She was also diagnosed with a dysautonomia(dysfunction of the autonomic nervous sys,) 4 months ago called POTS--doctors are finally becoming more aware of the dysautonomias. Her specialist (a neuro who works with dys.) feels that the POTS(postural orthostatic tachycardia syndrome) may be causing the fibro symptoms. At the very least, they are interrelated.
This week we get results back on testing from a rheumatologist--who I think is thinking she may have ankylosing spondalitis (he had a hip xray done on her--she gets front of hip/thigh pain alot--and that is an area that may show some problems on xray if a person has AS) and not fibro--he said that he tends not to diagnose kids with fibro, and look for other reasons for their pain, fatigue, etc.
One last thing to consider is chronic lyme. Our dog tested positive this past spring--bummer--another thing to worry about for our family-- since we have a lot of wood ticks in our yard, and we have all had ticks on us at one point or another. The rheumy ran further tests--about 5 of them for lyme and related diseases, since the initial test that Drs. usually run comes back wrong 50-60 percent of the time--she has had 2 of those come back negative over the last 3 years. These disorders/diseases that I am talking about have so many symptoms in common. We will find out more this week...
One last thing...she has visual disturbances--one of which is called "visual snow" which seems to be fairly rare--neuro opthamologist that she saw says he sees about 1 patient per year with this. He told my 13 yr old to try to ignore it as best she could! Yeah, right--maybe an adult could try to ignore it. She is having trouble reading--so I am very concerned about this, since there is no treatment at all. Worried she will be visually impaired, since it currently happens everyday--used to happen once or twice a week.(She also gets bad eye pain at times, which I always thought was fibro--muscle pain--related. I don't think it is ocular migraines becasue she rarely get headaches--and the eye Dr. didn't say to followup with a headache Dr.--I do get migraines, and he said that she could have inherited a "visual perception sensitivity" that is similar to mine with migraines, but that she experiences it in her own way--the visual snow--which he described as "noise" in the nerve connection to the visual cortex of the brain--which all makes sense to me--but, now what??? My gut feeling is that it is POTS related, but who knows? His nurse did not call me back to answer more of my questions, now that this has sunk into my brain. I will call her back after I hear the results from the rheumy doc. Whew! Sorry about that long post, but I feel like I could see what your thoughts are on all of this when you have time...
Thanks so much!
Dawn

 

llcsmom - October 18

One more thing I forgot to ask your opinion about..Lyrica or Neurotin...I have not considered these for my daughter, because I feel there are too many side effects..she is adult sized--she's taller than me. I have just struggled with the thought of having her try either of these meds--one dr. says try it and another says no--because of all the side effects.

She currently takes Prozac for the SSRI effect and Zebeta to keep her heart rate down from the POTS (her heart rate was going up to 150's just from sitting up or standing. None of the NSAIDS help with her pain of course.

Thanks,
Dawn

 

bernie - October 25

hi im gald someone understands i thought my hubby understood but i think i was wrong he read a leaflet and now he thinks i should be able to do some exercise and just get on with things.i have said to him it does not work that way so i have had a rubbis weekend.i feel i could run away if only....xx

 

nursegrl - November 8

Hi Debra,
I saw your post and I was hoping that maybe you might be able to help with some of the questions that I have regarding this illness. I have just recently been diagnosed with it. And seem to be fighting an uphill battle. Any input you may have would be greatly appreciated.

Sincerley,
Julie
J

 

Fantod - November 9

Hi Julie - I saw you question and thought I could answer some of your questions.

Fibromyalgia (FMS) is a disorder of the central nervous system that causes widespread chronic pain. The mechanism that causes it is not understood. There is no cure but it can be managed with prescribed medication. FMS is recognised by the Center for Disease Control and The National Arhtitis Foundation. Take some time to read all of the information in the blue boxes on the lefthand side of this page. Knowledge is power particularly when dealing with FMS.

There are now three prescribed medications used to treat the pain associated with FMS. They are Lyrica, Cymbalata and Savella. Lyrica is advertised on TV all of the time. The most common side effect seems to be rapid weight gain. Cymbalata is an antidepressant that works forboth the pain and depression that usually accompanies FMS. I use Cymbalata and it works well. The last drug, Savella, is new to the US market. It has been used in Europe for decades. Most rheumotologists seem to have 2 week trial packs for patients to try prior to filling a prescription. OTC medication does NOT work for FMS. Only certain classes of prescribed medication are effective.

One of the reasons you are in pain is because FMS interrupts the deep sleep cycle with short bursts of high intensity brain waves. This "perk" does not allow your muscles to repair themselves from the days activities. No deep sleep means higher levels of pain. This rapidly becomes a vicious circle. Amitriptyline is usually prescribed for the sleep issues associated with FMS.

The best doctor to treat FMS is a rhuemotologist. You can find a fibro-friendly rheumy by going to the National Fibromyalgia Association website and registering. Then you can see a list of providers in your area. YOu can also call your local hospital physician referral service and ask them for a rheumotologist and/or a pian specialist (I have both) with an interest in FMS.

With regards to diet, no deep fried foods, lunchmeat (or anything containing nitrates) or artifical sweetners (including Splenda). These items will probably raise your pain levels. If you need an artifical sweetner, use something made from the Stevia plant which is not toxic. You can find Truvia or Sun Crystals at the grocery store right alongside the other sweetners.

You will have to learn to pace yourself and get plenty of rest. Break tasks down into smaller increments and ask for help. One day of over doing it can result in several days or more of being able to do nothing. This is probably one of the hardest things to deal with especially initially.

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

 

nursegrl - December 2

Thank you so much for your time, I really appreciate it! God Bless!

 

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