medicaid issues and looking for alternatives or advice...

[Revy]

I'm in the very beginning stages from being diagnosed with Fibromyalgia. I am still trying to figure out a lot of things and one of them is medicine. So far, medicaid will not pay for any of the meds my doctor would prefer to start me out with; Lyrica, Cymbalta, and Savella, have all been denied. They will also only approve 30 days worth of muscle relaxers and the medicaid person said to "just prescribe an advil" to the nurse who was on the phone with them. My doctor is looking into what he can do from his end but I am also wanting to figure out what I should be doing. We have already had the appeal be denied. We're between insurances with husband's career change and being back in school, our situation is less than ideal but we're trying finished up with schooling to get ourselves back on track when we got hit with this diagnosis.

My doctor is great though I am his first fibro patient, while his knowledge is limited, he is taking the time to educate himself and is actively involving me in the process as well. I am in a rural area with limited options, finding a new doctor who has more experience with fibro is out of the question for now. I am already doing much of the non-drug alternatives and the pain is becoming unmanageable so I think medicine is a must try right now.

I am going back in next week to discuss whatever my doctor has found out from this week and I would likely to bring some options to discuss in case there is something he has missed. From reading the post, I see many of the forum members have been dealing with fibro for much longer than I have and I am hoping you guys might share some insight in to what alternatives medicines could be used in place of the ones I mentioned above. Any thoughts to what action I could pursue to get obtain any medicine for long term use until we are able to get private insurance. Possibly even ideas outside of the following for pain management.

Things we're already doing:
-Zoloft--I've had depression for years but zoloft is not working on the fibro symptoms. I have given up taking an otc pain medicine, it honestly makes 0 difference and I don't want to take a medicine that is doing nothing positive for me.

-Managing stress: difficult but striving for lowering my stress.

-Pacing myself through out the day and learning to have my husband help out more with the house and our LO.

-Diet: we already eat healthy: mostly whole foods, no soda, watch my sugar intake, (left unchecked I have an bad sweet cravings), lots of raw veggies and lean proteins, no pre-packaged foods. DD and I usually have a balanced vegetarian diet through out the day and we'll have a lean animal protein for dinner most nights.

-Exercise: I try to walk or swim most days though it is becoming more difficult to make it to the Y since winter has set in, the pain seems to be much worse now than it was in the summer/fall. Between a bed rest pregnancy, extreme stress, and the onset of fibro pain, I have gained too much weight in the last 2 years and I am trying hard to get my weight back down to a healthy range.


Dh and I am looking at getting a pair of orthaheel slippers for me around the house, we've had a close friend gifted us with a small dishwasher (dishes are my biggest struggle to keep up on), and DH has really stepped up in striving to pick up the housework on my bad days. At this point I have no clue what else I can try to implement.

Any advice would be greatly welcomed and thank you so much!

 

[sassy13]

Have you tried contacting the drug company selling any off the medications you are on? There are assistance programs available.

I am taking Lyrica, but have read others have success with Neurontin (gabapentin).
I tried Savella and Cymbalta, both of whick made my depressssion much worse.
I take long acting Tramadol for pain also. The short acting is less expensive, but you have to to take it several times a day in stead of once.
And whoever was on the other end of that phone telling the nurse to just prescribe an Advil is just ignorant!
Otherwise you are doing the other things you can to help yourself that are not medications.

 

[Revy]

I checked those out and plan on calling them tomorrow. The websites state if you are on medicaid or Medicare, they *should* cover the meds so I don't qualify for assistance. I plan on contacting the drug companies to find out if there is something that can be done since medicaid denies the medicines.

Lyrics is also on the non-approved list but I don't know about the others, I'll take those names in with me to discuss with my doctor. I went to school with the nurse's daughter and she had some words for the person at the medicaid office. My state sucks with medicaid but I am curious to know if anything will be changing come January. If you try to find out what changes are being forced by the ACA they just give you a run around then state "information will be sent out January 1".

Thank you for the info, I'm glad I got the non-drug things covered...sucks since all that only helps so much

 

[jcairns82]

Unfortunately, I can't help with the medicaid questions. However, I must commend you on all the steps that you're already taking. That's phenomenal! It appears that you're taking this diagnosis on at full tilt. My usual advice is reducing stress, seeking help, and change in your diet. You're already doing those.

 

[Ben_Ellis]

Revy,

I'm sure you've researched the drugs your doctor has prescribed, but before you despair too much over not being able to get the drugs you've mentioned, I would look at a few things.

All three drugs have extensive and very dangerous potential side effects, and there are petitions to stop their use because of these and their general lack of effectiveness in many studies. Also, they are not actually treating anything, but rather are blocking neurotransmitters in your brain. So it's a "trick" not a "treat". The blocking of the cellular reuptake of these neurotransmitters means that they have nowhere to go and tend to cause unintended reactions in other tissue throughout the body. In any other case, these drugs would be considered toxins. Beyond this, they are very addictive and can cause a lot of issues if/when you decided to come off of them.

Here's a quote from one of the petitions to the US FDA (which was particularly targeted at Savella):

"There has never been an advisory committee for any of the three FDA-approved drugs for fibromyalgia (Lyrica, Cymbalta, and Savella); thus, none of the issues relating to the definition of the disease, endpoint measurements, risk/benefit ratio, length of studies, and adverse reactions have been discussed by experts in the field. Our first ability to analyze Savella occurred after the internal FDA reviews were posted online in March 2009."

It is also known that more people in the US die each week from prescription drugs and painkillers than all diseases and illegal drugs combined.

So what I'm getting at is that you are very probably better off without them.

But you asked for suggestions and alternatives, so I'll quote the smartest nutritionalist I know and say "Drugs kill, Plants cure." and with that I'll recommend you research Moringa oleifera.

I've posted about this tree elsewhere on this forum, but a simple search will be enough to get you started and if I can help you find out more about it just ask. The point is,even more than following a particular diet regimen, getting proper and total nutrition provides a much better chance of helping with fibromyalgia than drugs could ever offer.

 

[1sweed]

Revy,
If your income is low enough with your doctors help you might have a chance to get help through the drug companies. Another thing you might try is there is a free "national prescription savings network," that helps people with drug costs that their health plan won't pay for. If you want to web search for it, it is located in Kansas City, MO. They send out free cards that give you a % off on the cost of a medication. It is totally free and can be used without causing you grief through your medicaid. I have not used it but receive them every year.

Otherwise would medicaid allow you to try Neurontin, it would help with the pain your having. Also it is good to research alternatives that might help you as well. Send me a message if you want to Hope you feel better soon.