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Daughter Has Fibromyalgia
5 Replies
RLVTmom - May 10

My only Daughter has fibro and is suffering from major flair. Not sure if medication is working, doctor seems more concerned with her depression (losss of quality of life major issue) than her symtoms and treatment. Now because she is loosing leg control and petite siezures they want to run her through the MS testing again. How is that supposed to help with depression and flairs? They did extensive testing for ms before diagnosing as Fibro. I dont know what to do.

 

Fantod - May 10

RLVTmom - Welcome to the board. I am truly sorry to learn about your daughters situation.

The doctor is correct in being concerned about your daughters depression issues. Depression is a proven catalyst for pain. Fibromyalgia (FMS) is a pretty complex syndrome and it sounds like she may have more than that going on. Finding the right combination of medication to relieve her symptoms can be very challenging under the best of circumstances.

Is your daughter in counseling? If not, she should be seeing someone for extra support. The best option would be to find a counselor who specializes in "cognitive behavioral therapy." It is also called "CBT." This type of therapy will give her the tools to cope with a diagnosis of chronic illness. You can go online or call your local hospital physician referral service to see if they can match you up with someone.

I was diagnosed with FMS about four years ago. I am completely disabled and unable to work. There is a grieving process that goes along with a diagnosis like FMS. It does take time to work your way through to acceptance. I find that being grateful for anything that I can accomplish no matter how piddling as opposed to focusing on the losses works for me. I break things down into more managable increments, ask for help and say "no" without feeling guilty. These are all hard lessons to learn. Having been there and done that, I now actually feel pretty liberated.

It is not uncommon for people with FMS to also have MS. You should take some time to read through the "associated conditions" listing which is located on the lefthand side of this page in the blue boxes. The doctor has to figure out exactly what is happening to develop a concise treatment plan.

No parent wants to see their child in this kind of difficulty - ever. You feel helpless, frustrated and powerless. Those are all normal feelings under the circumstances. At this point, there is not much you can do but offer your unqualified support. Let your daughter talk about everything that is bothering her even if you have heard it 900 times already. Bring her some flowers, send a card, make her cookies or something that she likes. Just be there and trust the doctors to get their job done. Be sure that you are involved in the process so that you understand what is happening to her, what the medication is supposed to help with and so on. Knowledge is power.

I wish you both some peace in the coming days. My heart goes out to both of you. Take care and God Bless.

 

January - May 13

I would ask if your daughter is on an antidepressant drug? Weakness in the legs and seizures are SERIOUS side effects of some antidepressants, including Savella - which is currently heavily marketed for fibromyalgia.

IF your daughter is on Savella, please google it - and read the second site, with the picture of the pill. This is the NIH site These are SEVERE adverse symptoms related to the drug, and the dr. should be notified immediately of this fact - he or she may not even be aware of it!

Please get a second opinion from a rheumatologist - some doctors are pretty fast and loose with the antidepressant prescriptions. Research them online (especially read the forums where people post about their own experiences taking these drugs) if she is already taking them. They can have serious consequences for some people.

You might also want to google "Making a Killing Documentary" - it is about the overprescription of antidepressants. I speak as a person with many years experience taking these drugs. I wish I had never touched them. They did nothing in the long run but make me very sick. And even more depressed. Please educate yourself about them. Too many doctors only know what the drug reps tell them.

 

Nee_ster310 - September 12

My mom has Fibro. Im sorry about your daughter. I would like to share an experience that me and my mom went thru. She had many doctors that shez been with. Now, My mother went to the a new doctor about 4 months ago and the doctor refereed my mom to go and order a product online to try for her fibro. Its an all natural product. She said this product has the highest antioxidants in the world. Its called Kyani. Well, I and my mother tried it at the same time with in the 2ed week I started not feeling the pain. For my mothers fibro it took a month and a half. Within the 3 weeks my mom started sleeping and it has been 14 years since she slept thru the night and now she is snoozing away. I asked the doctor if I can give this info to friends and family and she said its for everyone who would like to order. I call Kyani's customer service at #208-529-9872 #283378 my mom orders online at Kyani.net and give them the docs Distributor #283378 The three product that Dr. Baird let us know about is Nitro Extreme, kyani sunrise and kyani sunset. I just went ahead nd got my own membership #.This stuff truly works and wished that all doctors knew about this. Well, All I can say is try it for yourself. I cant believe that doctors dont know about this.

 

bluesbrrd - April 8

I asked my rheumatologist about Savella, and he advised against me trying it! I had terrible side effects with both Lyrica and Cymbalta, so I took his word for it! When I was having provlems on Lyrica, I went on line and saw terrible side effects peoplewere having, like double vision that wouldn't go away and other scary stuff like that, so I'm not surprised about the Savella. I guess it must work for some people, but I'm no longer a willing guinea pig!

 

Jocelyn - April 8

bluesbrrd,

I can hear where you are coming from. I am very chemical sensitives and the doctors continually want to give me more drugs and I just can't handle them. Things work for one and not another. I too, no longer want to be a guinea pig. I feel this website has helped me deal with a lot of things and people have great idea's on how to help oneself. Again, one has to just keep trying.

Best to you and I hope you feel better soon.

 

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