Frustration

I just went to see a new dr. and yet again I find a dr that knows nothing about fibro. She says the treatment for fibro is depression meds. Effexor. I have never been treated for fibro and tired of hurting and not sleeping. And so very tired of my family not understanding what im going through. Everybody thinks im just lazy. Nobody understand me. I'm crying as I write this because im way beyond frustrated. I have to stay with my parents because I have no money and my dad just asked me "are you sure thats what you have?" I was like are you kidding me??? I have been diagnosed with this for 5 yrs now and still nobody tries to understand. I've given them material to read to understand. Still im the lazy one. I have nobody to turn to ..to talk to about this. Can someone please tell me what is the treatment for fibro?? and does anybody know of a dr in charleston, sc that knows about fibro that takes medicaid?

http://www.healthgrades.com/rheumatology-directory/sc-south-carolina/charleston

Dear BabyGirl,

So sorry you are feeling so bad right now, we are always here for you and understand how you feel and all of the things and people that you are up against. It is so difficult for us to understand, for the Doctors to understand and especially for our loved ones to understand.

Most of the meds used to treat fibro are for depression. There is also things like Neurontin, or Lyrica for nerve pain. Most Rheumatologists will treat fibro, but you have to call and ask the question, also ask if they accept Medicaid.

I hope that you can get some relief. The best thing to do is research, knowing your body and what you have will always be an advantage to you. Keeping a running list of symptoms will always be of help to you when you go to the Doctor.

I wish you well,

SK

Hi there, BabyGirl and welcome to our site. I'm terribly sorry that you've got fibro. It's just awful, isn't it? And made worse when you have family/friends who will not accept what's in front of their face. But honestly, who could ever possibly imagine pain this terrible? That jumps around from spot to spot? Even when I'm having a really good period, I tend to disbelieve that my pain possibly could have been as bad as I thought it was. Until I get another horrible flair. This is just a terrible illness.

I'm on Effexor but I was given it for my depression that was due to the fibro. I'm on Lyrica for fibro pain. Cymbalta is another med that's for fibro but it's apparently more expensive and I couldn't get on it. I couldn't get on the Lyrica at first either, because it was too expensive for my health insurance but once I got an ulcer from taking NSAIDS, they allowed it. Your insurance may be the reason why your doctor is treating you with Effexor instead of Lyrica or Cymbalta. However, Lyrica does have a cheap cousin medicine called Gabapentin. I tried it and it did help with pain. But in my case, I got horrible headaches from it but couldn't take it. Yet Lyrica works and I don't get the headache. So you could ask your doc to try Gabapentin I suppose.

Another idea is to write to the makers of Lyrica. They offer free Lyrica to people who qualify financially. But you'd need a doctor's prescription to get the Lyrica. But it's an option. I did it myself for about six months.

If your doctor is resistant to treating you for fibro then maybe it's time to replace her. I've found some Medicaid providers in Charleston who supposedly take Medicaid on this site: http://www.doctor.com/Charleston-Medicaid-WV. (Phone numbers weren't included but you can Google them.) They rated better than the other doctors who took Medicaid but they still only rated 45 points out of 80. (The others only rated 20 or 25 out of 80.) Here's the list of docs who rated 40 or 45:

Dr. John Freedy, MD

Family Doctor

Primary Office Location
171 Ashley Ave
Charleston, SC 29425

DocPoints
45/80

Dr. Barry Hainer, MD

Family Doctor

Primary Office Location
171 Ashley Ave
Charleston, SC 29425

DocPoints
45/80

Dr. Jairy Hunter III, MD

Family Doctor

Primary Office Location
171 Ashley Ave
Charleston, SC 29425

DocPoints
45/80

Dr. David Garr, MD

Family Doctor

Primary Office Location
171 Ashley Ave
Charleston, SC 29425

DocPoints
45/80

Dr. Peter Carek, MD

Family Doctor

Primary Office Location
171 Ashley Ave
Charleston, SC 29425

DocPoints
45/80

Dr. Heather Rose, MD

Family Doctor

Primary Office Location
171 Ashley Ave
Charleston, SC 29425

Avg. Patient Rating

DocPoints
40/80

Hi BabyGirl,

Sorry to hear what you are going through. It makes things even harder when our family doubts us about our illness. We don't feel validated or heard. Hopefully and eventually they will come around...my family eventually did. Here you will get a lot of support and understanding. Everyone is so kind and will always be there to lend an ear and be supportive. I feel so happy to have found this site and have read many of the other members story as it really validated me and I didn't feel so alone in what I am going through. As far as what you doctor suggested she is right...but sometimes along with medications for depressions for fibro ie. Cymbalta, Lyrica, Gabapentin as well as Effexor, your doctor may recommend a pain medication to go along with that depending on the degree of your pain and how effective the fibro medication works for you. It is a process and usually a doctor will follow you very closely over a period months eg. see you every couple of weeks to see how that dosage is working for you and if they need to increase the dosage. Communication is so important. Anyway that is the way my doctor did it until I reached a level in which I could breath again and have some quality of life. Never think that you will be completely pain free because that should not be the expectation...it is that you reach a manageable level if possible. Just for your info I went to see a Rheumatologist for a second opinion and she told me that it is not their job to treat fibro. I was very surprised as what I had read they are the type of specialists that specialize and know the most about fibro. My GP is the one who diagnosed me and has been the one who believed me, understood my pain and took very good care of me. I'm not sure if he know's all the in's and out's of fibro and what other symptoms that can come with it, but he listens and is very compassionate. The important thing is that you find a doctor who believes you and will take care of you! Whether that be a Rheumie, GP or Chronic Pain Specialist etc. I have done so much research on Fibro myself and in reading the stories here too I have learnt so much. So it is also important to be pro-active yourself and educate yourself as much as you can. I hope some of this helps and best of luck in your search to find the right and best doctor for you! Sue

Just a small correction the meds I mentioned are for fibro pain it is Cymbalta which is for depression and fibro pain. Petunia Girl is right Cymbalta is very expensive. I was fortunate that my doctor gave me samples for a while and in the meantime he had put in a request to the government of Canada and I am now on the government program for that at a much lower cost. I tried Lyrica and it worked very well for quite a few months and then I had a reaction in where my legs and feet swelled up double there size. I was in a lot of pain and could hardly walk and let along get shoes or boots on! Obviously I went off it. Gabapentin did not agree with me either...dizziness and double vision. I did not try Effexor as my doctor felt that medication is the least effective. Everyone is different it is through trial and error. Again best wishes!

Hi BabyGirl. I am so sorry that you're suffering so much. It took my husband a while to come around too but he's finally trying to understand better. One way to explain it that I have seen mentioned before is to ask the person to imagine the worst flu they've ever had. Then imagine what it's like to have that all over painful body feeling and not have it go away. Besides the fibro, I have Ehlers Danlos Syndrome which is also very painful for me. I have the hypermobility type. EDS is a genetic connective tissue disorder that causes the body to make bad collagen. I've seen some people with EDS have problems with their family believing them even when one or both of their parents have EDS symptoms also. Denial is a very weird and powerful thing. Those of us who have such awful pain don't get the luxury of denying it though. My mom won't be checked for EDS as she knows it had to have only come from my father. The hypermobility I have definitely came from him. We do know she has fibromyalgia though so she does understand how I feel with it. You're not lazy, you have medical issues. There are many people on this group who do understand where you're coming from though so hang in there. As for medications, Gabapentin works best for me right now and I have Naproxen for breakthrough pain. Some theories say that fibro is a nerve disorder, some say it's a form of arthritis and some have the "it's caused by depression:" idea. I don't believe the last one at all, when I don't hurt so bad, I don't have depression issues. The pain comes first! I have had some physical therapy also but have to be careful with it due to the EDS. My joints are too loose and lax, I definitely don't need any more stretching lol. Getting enough sleep seems to help too but it's hard to sleep when you hurt, I know. Hang in there and we are here for you.

Have a good night

Susan W

Hi Baby Girl,
Sorry to hear about your frustration. Having fibro is not for sissies. It is a damned hard challenge. I’m on Lyrica, Ultram, and Skelexin for fibro. I’m working with a pain management doctor to treat my symptoms because my Rheumatologist refused to actually treat my symptoms. Talk about frustrating! I get frustrated with some comments from my mother especially. I finally told her that her advice is not helping because she has no idea what she’s talking about. People who don’t have fibro can never truly understand it. Maybe one day fibro will not be the punch line for jokes, but right now people who don’t have it don’t get it. Try to find a well recommended pain management doctor.
Good Luck !

Hello BabyGirl

I live in Canada so I can not recommend any doctor in your area. But I can say that nobody in my family showed me any support as they were not interested in learning about fibro. Many members have been completely frustrated as you are because of a lack of support. No, we are not just lazy. The problem is that we do not look sick.

You were diagnosed with fibromyalgia five years ago, but still you haven't been able to find a doctor who is knowledgeable about fibro and can diagnose the proper combination of meds. Though it is very frustrating, keep forging ahead with your search for a doctor who is able and willing to prescribe the right meds for you. That will make a lot of difference in how you feel.

Gentle hugs

Rachel

Baby Girl,
I have had fibro for 15 years and I do take Effexor. It helps some but without my Butrans patches I would not function even as much as I do which isn’t well. I have so many allergies that this combination has been the best I have been able to do. Lyrica did nothing for me and I am afraid to take Cymbalta since it took my father mentally out of commission.

Hope this helps! I hope you find a physician and meds to help. I have found though that research and documenting what works and what doesn’t helps in knowing what path to take next.

Gentle hugs,
Jrratis

BabyGirl
It looks like you’ve already got lots of very helpful replies.

It took me a while before I was prepared to try an antidepressant for Pain!!!

Of course on the surface it doesn’t make much sense, but antidepressant act on neurotransmitters, which carry messages from one nerve cell to another and they, the neurotransmitters not only lift the mood, as in depression, but do other things as well.In fact they, the researchers don’t know all the stuff that they do, but it seems that for some people they help minimize pain. Hope that helps. Barb

I would like to thank all of you for replying trying to help me. I am going to continue to pray that God will help me find the answer. God Bless all of you.

Hi baby girl, I understand your frustration, I’m also on depression tablets called endep 25, its to help relax the muscles but when I get really bad I take Valium which is pretty much every day. It’s really hard to explain to family and those who work to try to get them too understand is very difficult because they do think we’re being lazy when its nothing to do with it. I don’t have a doctor who understands either if you can find a doctor who has fibro at least they would understand what your going through. Just know you have friends on here who care and know what you are going through. God Bless Melissa

Hai babygirl,I am 25 yrs old and gng through same situations like u,my frnds, parents,relatives,co workers no one is belivng me,me too hav d lazy boy stamp in my company but nw I dnt care anyone,I am leading my my life as I like.remember u cannot live by satisfying everyone just forget about ur pain,accept it and love ur life,even nw am waiting 4 my doctr ,just live ur life as u wnt.

Hugs.

First, a gentle hug! I was diagnosed 13 years ago. I had an older sister who was diagnosed before me. We all thought she was crazy. I learned. Now, to deal. First I think there are different levels of fibro pain. For example, my sister is dysfinctoonal while I can still live a fairly normal life. I worked 12 years after being diagnosed. It’s difficult to tell others what to do because you don’t know there level of pain. I suggest u ignore what others say about u. Concentrate on yor health. Eat the right foods, stay on schedule with both food an meds. I take Symbalta, ultram, and zanaflex. Moving is the key as well. The more you move the more you can move. I hope this helps. I do care!

hello babygirl,

i have had fibro. going on 4 years now. if you want to try to treat your fibro. more naturally, I would work on eliminating wheat and sugar from your diet along with working on eating real foods versus processed foods. When I am able to cut out all wheat and most sugar, much of my fibro. pain goes away. That and going monthly for chiropractic adjustments has really made a difference in lessening my symptoms. I still have symptoms, but they are not as pronounced as before. I am drug free right now, but do still struggle with symptoms when I don't eat well. I used to take prozac (made me nauseous everyday) and gabapentin (helped with nerve pain).

Hi I hope you find a doctor that helps you.Im on state insurance and thank god my insurance covers Cymbalta.I have two medications that are over 300 dollars and Cymbalta and symbacort is the other one.I see a rheumatologist who is useless and doesn't know if I have fibromyalgia or not.I do I was diagnosed back in 2003 im going to see that doctor again in boston I see a lot of then in the hospital.A better chance take your insurance.I also see a neurologist who treating the leg pain balance issues and she a lot better then the rheumatologist is.Just finding the right doctors can be diffacult this will be my sixth rheumatologist because they don't know what there doing.I also take ultram plus 15 other meds im a mess.take care sherri let me know how you make out

This entry looks like one I would have submitted twenty-two years ago when I was going through the same things. It's interesting that we all seem to experience similar responses from doctors, family, co-workers, etc., Our frustration level shoots through the roof every time you are called lazy, get emotional, miss work, stay awake AGAIN at 3:00 AM, etc.,

You may already know this but the reason you are being prescribed low-dose anti-depressant meds is not because you are depressed. Actually, you may be but low-dose Effexor isn't going to treat depression. Low-dose anti-depressnt meds are prescribed to fibro patients as a "serotonin-norepinephrine reuptake inhibitor". At very high doses, it can be used to treat major depressive disorders. But Low-dose usage is used to treat everything from menopause to fibro to ADHD. Try not to be labeled by the meds you are taking. It is simply not worth it.

As to your parents, it is doubtful they will change. they tend to be who and what they have always been. What I would do is send away for information about FM and "conveniently" leave it around the house. The Mayo Clinic has great info on fibro. NIH (the department is NIAMS) also has terrific free info they'll send to you. If your parents are computer savvy and spend time in email, start emailing them links to this site and others you find interesting or better yet, sign them up for FM info to be emailed to them.

Best of luck to you on your journey. It doesn't always suck and one day you will realize that no matter how hard you resist or fight, you are always going to wake up ion pain. You can keep fighting or you can accept that and live life despite that realization.

There is no exact treatment for fibro yet because they don't even know the cause yet. The only meds the give for fibro in general is gabapentin and Lyrica. Your medicaid probably wont cover the lyrica because when I had medicaid it didnt but covered gabapentin because it is a much cheaper drug. Other than those they just give meds to cover up the symptoms like anti depressants, mood stabilizers, pains meds, sleeping meds and some depending on other conditions you may have like diabetes because fibro and diabetes are sometimes tied together.. And I believe some of these doctors know only just as much as we do or less and especially the doctors with medicaid I know what a joke that can be... I don't have medicaid anymore so I do not take meds anymore and frankly at the moment till something better is discovered I choose not to because medicaid left little option for me and those meds didn't work out for me. I suggest taking a b complex vitamin daily. It does help a lot physically and mentally. Also, fish or krill oil which every you can afford. Vitamin D is good as well. I have recently start taking magnesium and malic acid (it's together) and I feel it is helping with my pain a bit but I can not be too sure yet but later on if I see positive results I'd let you know :) ... You know these prescription meds are just covering up symptoms. Meanwhile our immune systems are going out of wack and we're just running so low on fuel that we should concentrate on our health and building up a stronger immune system. It's harder when you don't have much money because it all adds up healthy food is more expensive than the crap in the drive through or in a can at the store.. But I suggest just do as much as you can with a healthier diet and some good supplements and I pray there will be some new answers and new effective treatment... Also I understand how it is when your family doesnt understand and doesnt really try to and just makes you feel like you're pathetic though you're not. And living with them, very hard too. Just keep think of what you know is right and how a lot of people a critical to what they can't understand. We've all done it some time in our lives, unfortunately when it comes to this the criticism it real hurts because one of the things we really need is support. I hope things look up for you. Just remember they're just human. Some more ignorant than others. We are all here to talk to you and understand your pain so you are not completely alone anymore. I wish you well and hope that you find something to ease your pain and restlessness.

Natalie (BeautifulNightmare)