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Posted 2/25/2015 4:59 AM (GMT 0)
I'm Jeannie.

I haven't sought out a support group yet, but many things have been falling apart recently.

I was diagnosed with fibro 4 years ago. Ran all the tests under the sun, always normal. Recently my doctor is frustrated with me, I didn't qualify for SSD, my insurance won't cover a med change, and my neurologist just dismissed me. I'm alone. I'm a single mom. My family act like they are "there" but I still feel isolated.

Today I just got an advocate to try to bridge the issues with my doctors and help me find pain management. I've read over what many people have said and it all sounds like me: pain, fatigue, fuzziness... I also suffer with OCD, which is really hard to fight when I am burnt out. I take a slew of supplements, natural remedies, eat clean, walk daily...

I'm just desperate. I feel like I've hit a wall where I cannot go on any more. I'm so depressed. I can't imagine living a life with this pain forever.
Posted 2/25/2015 5:18 AM (GMT 0)
Hi, Jeannie.

Don't despair - you're in a good place here. We all get really down from time to time. Who wouldn't? Chronic pain is a very hard thing to live with...not to mention the fatigue and fuzziness (ugh).

I don't honestly think any of us is ever totally pain-free, but with perseverance and a little bit of luck, we can usually get it down to a level we can function through. How we do that doesn't look exactly the same for any 2 Fibromites. I'm dealing with increased pain right now too, and I don't know why, so that's disturbing :(

That's good that you got an advocate to help you. And you reached out to us - good steps!

Did you notice our first thread, "Fibro 101"? I had been suffering for over 20 years when I found this forum, and there was still a lot of stuff in there that was new to me....or added to my understanding. So I hope you'll check it out - and I hope you'll keep posting so we can get to know you!

Debbie
Posted 2/25/2015 6:18 AM (GMT 0)
Welcome jeannie,

You are taking good steps..it takes a while to find exactly what will work for you, but you can get relief, maybe not pain free, but much better...

Lj
Posted 2/25/2015 2:54 PM (GMT 0)
I am looking into the Vitamin D thing actually. I'm not sure if that is something I have requested over the years. I am also intrigued by the calcium research.

I don't expect the pain to go away, but its become overwhelming, and it has been since November. I just want it controlled so I can function.. I miss happy days.
Posted 2/25/2015 3:14 PM (GMT 0)
It's been a really tough winter for most of us. I'm sorry you're feeling so down.
Posted 2/25/2015 5:03 PM (GMT 0)
Hi Jeannie,

Welcome to the fibro forum!!! What medication are they switching you to? Often you can get coupons for a lot off of your cost or copay. I would check that out. I have had two that covered all but 15.00 and that really helps. And they are brand name.

Just look it up on the internet and put the word "coupons' in the browser, you may be surprised at what you find...

I hope that you feel better soon. As was posted above, I also don't think anybody is actually pain free with this. But there are many ways to distract from the pain.

Take care and keep posting...

Hugs, Karen.,..

PS I take 5000 iu of vitamin D3 and it helps. A lot of people take 1000 iu. I had mine checked and it was low. And yes, it has been a tough winter. I have been without water for 3 days now... Hopefully today it will be back on.
Posted 2/25/2015 5:34 PM (GMT 0)
Hi Jeannie

I was diagnosed back in 2000 and was a single mom of two at the time, a 2 and 3 year old. Some days it hurt for them give me a hug!!!

You have taken good steps and are on the right path. Work with your doctors and you will figure out which meds are right for you. Like it's been said before I don't think any of us are pain free we have just learned what is best for us.

This is a really good place to vent, ask questions or whatever. Everyone here is very supportive. I hope you will let us know how things work out and keep in touch so we can get to know you.

I hope you feel better soon!!
Posted 2/25/2015 6:05 PM (GMT 0)
Welcome Jeannie,

I think we are all having a completely crummy winter. The climate is just killer. I spoke with someone this morning who did not have our issues and she told me she hasn't felt warm all winter and her bones hurt. We aren't losing it - just are dealing with a lot.

Almost all of us are dealing with a deficiency in Vitamin D. I added the Magnesium Malate that they recommend and it helped tremendously. I also recently added Vitamin C to my routine as it helps with more things than I ever realized. They are finding it has cognitive and mood support as well as other benefits for overall health. I was doubtful, but gave it a shot. It seems we run low on that during the winter.

A lot of folks here can make recommendations for things to try that will help with the pain. Once you have some ways to lessen the pain, it may lift your mood a bit. I have been working on myofascial pain release and it really makes a difference for me. I got a backnobber for Christmas which is basically an S shaped piece of plastic that you can use to help with release on your back. I carry it everywhere with me and use it at intervals throughout the day. I'm not great at it, but it helps a lot.

Let us know how things are going with you, and feel free to vent as needed. one of the best things about this place is there is always someone else who has experienced the same thing.

Take care.
Posted 2/26/2015 2:14 AM (GMT 0)
Thanks everyone! Great to hear...

I don't expect to ever be pain free- but I need it to be more manageable than it currently is, because it is interfering with my daily life, and my long term..

I love reading everything here- my eyes start to hurt- because why not, right?- so I read what I can :)
Posted 2/26/2015 3:12 PM (GMT 0)
I understand that. I have been having a problem whenever I look at anything on my iPad lately. It seems to be better on my desktop monitor, but I've had some doozy of a headache from it.

Are you feeling any better today?
Posted 2/28/2015 7:26 AM (GMT 0)
Welcome lilnutt! Glad you found this forum. You don't have to feel lonely again because this is a great place to receive support. I use to feel the same way as you described. This forum has really gave my life back to me. I have learned so much on fibro here. You will learn more here then your Dr's will share with you. There are so many ideas here to help your fibro. I would recommend to read post frequently and ask questions. You might have some things to share with us too. We all learn from each other.

I hope you can find some good pain management. Over the years they have realized that hard core narcotics are not the best for fibro. I use to be on them until I became to dependent on them. I now use subutex for pain. It has worked really well for me. I found out if I have good pain control my life is so much more manageable. I do the following for my fibro treatement. Magnesium, vitamin D, exercise, heat, antidepressent, subutex, limit stress and calcium.

I hope we see you around the forum more. I now have good control over my fibro. I finally got my joy and peace back. You just need to learn a good treatment plan for yourself and work it into your life. You will see changes and hopefully will bring your joy back to you.
Posted 2/28/2015 12:25 PM (GMT 0)
Hi, Jeannie, and welcome! You have already gotten excellent advice from our members but I wanted to add another supplement to your list. It's magnesium malate. It helps with muscle pain and fatigue and many have gotten help with this supplement. I too, take 5,500 IU of D3 a day and that helps me also. There are links in Fibro 101 about these two supplements and how they work in the body.

I also use ibuprofen with food. Tylenol, and a muscle relaxer called Robaxin that made a significant difference in my pain. Plus because my pain levels are less, I sleep much. Eter and that helps with fibro. Too. So it is win-win situation for me. I only take half of what is prescribed because I didn't want the side effects like drowsiness, so this might be something to ask your doctor.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
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