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revmomx2 posted:
Hi! My name is Patti, I'm 37,and my family doctor just diagnosed me with fibromyalgia. I think I've had it for a while, without realizing it. I was diagnosed because about three weeks ago, I started having a lot of back pain/aches for no reason. I thought I had a UTI or kidney infection...but after 5 days of antibiotics, it wasn't any better. My doctor is very familiar with fibromyalgia, so he examined me and said that it was a possibility. I went back this Friday, and the tenderness was still there, as well as some of the pain. He gave me the choice to do nothing or put me on a medication...I chose the medication, and he put me on Gabapenin.

My biggest concern/challenge is that I work full-time (I'm a pastor) and have two children...and now that I know why I get so tired and achey...I'm wondering how to care for myself and what I can do to increase my energy level and reduce my stress while still doing everything I need to do.

I would love advice...Thanks!
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missist responded:
Hi.. You'll find a lot of info here from various members who have handled things differently.

One thing you'll hear from most of us is to pace, pace, pace.

If you do have fibro--its chronic and although you may have some lessening of symptoms and maybe a remission of sorts at some point-- its permanent.

It also tends to move around so while your back is bothering you know--several months from now it may be hips or shoulders or knees or ankles--even elbows/wrists etc.

You could get migraines, IBS, all kinds of things and depression is a biggie too.

So -- be prepared by spending some time learning and you'll be ahead of the curve.

A lot of us use vitamins--especially D & I like B's too.

Some use various other supplements.
There are all kinds of RX and non-RX pain regimins.

I use gabapentin but I also use an antideppressant and celebrex to help with pain. I also use devices like wrist guards, arch supports etc.

You should find exercise that works for you--stretching, walking, water exercise are popular.

some people find help with special diets--hasn't worked for me--but I have friends who swear by gluten free.

Stress is huge-- you really have to learn to be kind to yourself--and it is not easy. Just because you have fibro does not mean people will automatically understand your need for rest or pacing or bowing out of some things.

Anyhow hope that was a start for you, will add you to my prayer list and be sure to come back and join in--as you can get a lot of help here!

Mary
 
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revmomx2 replied to missist's response:
Thanks, Mary!

I haven't told anyone other than my husband yet...I figure I won't until I need to, especially in terms of my churches (I'm the pastor of two small churches). I am trying to deal with my stress in a better way...and reduce my stress level as much as possible through good self-care. I already have a therapist, which helps.

Thanks for the tip about vitamins! I will start those...I am on a few other medications for ADD and depression. I just started the Gabapenin on Friday, so we'll see how that helps.

-Patti
 
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Anon_10089 replied to revmomx2's response:
Hello-

It is interesting that you're on meds for depression and ADD because a couple of meds for those conditions are often used to treat FM. For example Cymbalta is an antidepressant often used for FM. It affects the serontonin and norepinephrine neurotransmitters. And some people take ritalin or adderall to increase their energy because of the chronic fatigue.

So my suggestion is to read as much as you can about meds for FM that might work for all conditions! I obviously don't know what you're on now, but maybe some adjustments could be made to help with all conditions.

Many people find gabapentin helpful. I personally did not. I only say that because as you will find out, FM is a very diverse conditions. Everyone is different. Never let a doctor, a friend, or even a spouse put you into a "one treatment fits all" box. If a treatment is not working, you can try something else. Also, if you don't like the side effects, you can try something else.

It sounds like you already have a good foundation in place. This site is one of the best places for information and support!
 
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dollbug responded:
Hello Patti and welcome....MiMi in NC. Sorry that you are dealing with FM....I am sure that you will find some good *tools* here though that might improve the way you feel.

I would also encourage you to be sure and ask your doctor to check your Vitamin D level, which is important to a lot of people these days. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well. It is just a simple blood test...but you must ASK the doctor to run it...as it is NOT included in the normal blood work that the doctors do.

I would also like to say that there is no magic pill that works for everyone. We are all different and what works for one may or may not work for you. It does take you doing your own trial and error process to find out what makes a difference for you.

Most of us FMers have multiple health issues and sometimes I think this is why the doctors have problems in knowing how to treat us.

I do want to tell you also that I had lower back pain which started one day out of no where. I thought I had kidney stones (and I did) but the doctor said that they were not causing my lower back pain. My family doctor sent me to several specialists and no one could help me. I am now taking P5P which is a form of Vitamin B 6. This *controls* my lower back pain and as long as I take it about every 24 hours it works to ease my lower back pain. You can find this at a vitamin store.

I am one of the FMers here who has learned how to *control my FM pain* by taking vitamins and supplements and using other things as well. A heating pad is good for places which continue to hurt. Stopain Spray is also good to use. (you can find it at walmart) Drinking plenty of water every day is a must for me and watching what I eat is also important. Doing gentle exercises and/or stretches also helps to keep the muscles from getting stiff and hurting. Continue to move, even if you are not feeling good. This helps. Getting enough sleep at night and trying to limit your stress might also help.

Taking a hot shower at night using lavender bath salts right before bed time might help you so that you can sleep better. Getting a foam mattress topper might also be something you can look into, if you are having problems with sleeping.

I have learned how to *control my FM pain* but I have NOT found anything yet that has helped the chronic fatigue that I have. I hope you will be able to find something that works for you and share it with the rest of us.

OK...I hope this helps some.

Be sure and check out the info under *tips* and *resources*...and be sure and review the *member toolbox* as well.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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meg_k replied to dollbug's response:
Revmomx2:

You are getting good advice already! One other thought is to look at what anti depressant u are taking and possibly switch. I have tried many, and I'm finding good luck w/ Cymbalta & Wellbutrin combo. Cymbalta is also FDA approved for FM, and Wellbutrin can also help with attentional issues as seen in ADD.

Good luck. Meg
 
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nononsenselady responded:
Hi Patti, so sorry to hear you have fm. I don't write often but when I saw you were on Gabapenin I thought I would say something. I have been on strong pain killers for years until the doctor suddenly decided no more which is really hard, but probrably right. So I have been trying non narcotic medicines. The last one was Gabapenin. It took me a few days to put it all together but I was feeling really achy, like I wish I could just die it was so painful. Finally after a week I finally realized that it was a few days after I had started taking the new medicine. I stopped taking it last night and I have had a much better day. Now that is just me. I know it works very well for others because that is one of its main uses. I am just mentioning this so that you can "listen" to your body and know when you are being made to feel worse, better or just the same. Don't mean to scare you but there is so much to be learned about FM and how drugs, weather, temperatures, stress, exercise etc effect you. Good luck to you!
Laurie
 
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rudyandirmouse responded:
Hi revmomx2 and Welcome to our family. I'm sorry you have been DX'd with fibro but glad you found us here @ WebMD's fibro support community.

So glad to hear your PCP is knowledgeable and works with patients with fibro. So many PCP don't get it and will not be able to DX their patents, who go onto suffer the fibro symptoms for many months, years even until they get to a Rheumy who can DX their fibro.

You've been given a great deal of good info already so won't add much to it. I do suggest that your Google all things fibro. Vit D3 and supplements that help with fibro symptoms. Keep in mind that one size does not fit all with fibro. Some things are proven to work, others work for some and not at all on others. It's a trail and error things... so try things for size.

And I too take Gabapentin daily. I was able to go on and off it during the warmer months of the year but as it's been such a cool, no typical weather year ( 2013) I have had to use Gabapentin most of the year and since fall and winter is typically when I go on it again I'll be on it until March. When hopefully it will be warmer this year and I go wean myself off of it until October 2014.

Also keep in mind that weather is a player here with fibro symptoms, aches and pain. You will feel, for the most part better in the warmer months, ( may not always be true ) and more sympatric and achy during cooler months with rain, cold and snow. Not always the case, but most times this is the pattern fibro takes. Knowing you will feel these symptoms during these months ( times ) you can take extra D for a week or so, more supplements that help ward off pain, etc symptoms. Some of us have heating pads that work well for us, other use, ( I do ) OTT-LITE which helps give us like sunlight during the winter months when being out doors and sunlight is not a daily option. But as I said it's trail and error until you find what fits you and your symptoms.

Will close this here. Again, welcome to our family.. feel free to post daily. Please join MiMi's Roll Call. It's a daily check where we say Hi and journal our day's plans with others. Nice way to keep it family.
Gentle hugs, Linda R
 
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Anon_2912 responded:
As everyone says, trial & error. We are all different and react differently to things including pain.

For me the medication they give for FM just made things worse for me. I did not need the added side effects on top of what I was already dealing with. Mentally it was a nightmare for me being on those, so now I only take Ibuprofen 800 (3x daily).

I am not saying I am pain free by any means, but I think for me working keeps my mind preoccupied. I do take B12 & Vit D, however, I also take thyroid medication.
 
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meg_k replied to Anon_2912's response:
Patti (revmomx2),

Posting again...

I take:
Gabentin 300 mg x 2 and 600 mg at bedtime
Cymbalta 60 mg
Wellbutrin (bupriopion) 100 mg x 2
Vit D 5000 IU daily
Vit B12 - can't remember the dose
Acetyl-L-Carnitine -- I think it's 500 mg x 2
Ibuprofen as needed -- helps some types of pain, not others
Klonopin as needed to sleep or for breakthru anxiety.

This seems to work pretty ok for me. FM still has ups and downs though. And as others said, we are all different and what works for one may not for another.

I feel compelled to comment on your statement: "I'm wondering how to care for myself and what I can do to increase my energy level and reduce my stress while still doing everything I need to do." Yes, we are all wondering that, too!

Mary commented on this above, and I think others touched on it, too. I think most of us have been right where you are and unfortunately have found the answer is...you can't. Honestly, if you have FM, it is near impossible. You probably really can't care for yourself and reduce stress and continue to do everything you currently do. Something will have to give. This realization is HARD to take and makes us angry and full of grief, but we owe it to you to tell it to you straight, bc we have all been there.

You have to set limits, pace yourself, switch activities regularly (from mental to physical to emotional type & also from high to medium to low intensity), rest before you're tired, exercise (but not to excess), and find a treatment regimen that works for you and then you will probably start to feel better. But... you first have to stop the push-crash cycle that gets you sick in the first place and/or makes you worse.

The blessing of FM (yes, I said it, people ... a BLESSING!!) is it causes us to take an inventory of our priorities, to commit only things that are most important because that's all we can manage and stay healthy (ier). It also helps us not sweat the small stuff because I will be damned (excuse language) if I am going to let stupid things or stupid people use up what little energy I have. I save what little I have for my family and my faith and the few things I love to do and can still do. And actually, it's still a pretty good life.

It's a journey getting here, but we are all taking it together.

Others in our FMily...talk me down if you think this is off base, but as MiMi says, that's my story and I'm sticking to it!

Love and soft gentle hugs, Meg K.


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