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New Member

Date Joined Sep 2009
Total Posts : 6
   Posted 9/3/2009 1:38 PM (GMT -7)   
Hi all! I have spent alot of time reading this forum. I have tried all meds(effexor,neurontin, anti-depressants, Lyrica) the Lyrica worked miracles for over a year, but it has stopped working. I have been on Savella a month with no improvement/relief.  I have been sick now for 7 years. I do not know what else to do, I can not stand this pain, at times I just have to scream. It is worse than kidney stone pain or childbirth...REALLY! I have been on Hydrocodone 5-325 two x a day. I have talked and talked to my doctor about my pain level, all he will say is I can not get hooked on drugs that I have to fight this(I am 4o) But I can not fight anymore because it is so bad. I am so depressed and all I do is cry. Can not imagine a lifetime of this. Maybe if I could get relief I could start fighting again. I am missing out on all things with my children, this is what hurts the most. My daughter is off to college in a year and I need to spend quality time with her. Please , if anyone can help..I live in Kentucky, the pain clinics around here my area all say "we do not treat fibro" I had wanted to try the numbing medicine that goes straight into my spine, but only pain clinincs do that. Does anyone know of a good, knowledgeable doctor, who will help me with my pain. God Bless YOU ALL!! Susan

Forum Moderator

Date Joined Apr 2005
Total Posts : 17501
   Posted 9/3/2009 2:02 PM (GMT -7)   
Hi, Susan, and welcome!  Oh, I sure do know what you are going through.  It's so difficult when you have children.  I was nearly 40 when I came down with fibro but I have other illnesses that made it so I couldn't be the type of Mom I wanted to be.  But, you know what?  Your children really do understand and you can spend quality time with them, even with fibro.
I have never gone the narcotic route because my doctor told me that you usually need more and more medication to get the same results as when you first started.  I didn't want to do that.  I do have Vicodin in my medicine cabinet just in case I need it but I've never taken any yet.  That's because I know that the pain will wax and wane.
I hope you are moving around.  If you sit or lay too long, you will be stiff as a board and your pain will be worse.  Believe it or not, light exercise helps fibromyalgia!  I know, when all your muscles, tendons, and ligaments are screaming at you, the last thing you think you need is exercise, but it really does help!  I walk.  That's my form of exercise.  When I started out, I only could go a few houses down but now I can walk my dog a mile every morning.  Actually I could do that several times a day, and I do in the winter time.  I live in Florida and it's too hot in the summer for both me and my dog.  If you have access to a pool, swimming is another great exercise for fibromyalgia.  
You need to start out slowly.  Every day you will see that you can do more.  You will have pain but it should get a little easier for you.  When you see that you can do more that will help your frame of mind.  Right now you are sooo depressed.  I can read it in your post.  Having chronic pain is depressing.  But, with effort and our cheering you on, I think we can help you have a fulfilling and enjoyable life in spite of fibromyalgia.
I take malic acid/magnesium supplements and vitamin D3 for pain and fatigue.  These have helped me.  They don't help everyone but it's worth a shot.  Many with fibro are deficient in these vitamins and nutrients and that can cause extra pain and fatigue. 
I am not pain-free and I don't expect to ever be pain free.  I totally and completely accepted this illness.  I know the doctors don't know what is causing this so there really isn't a lot out there to help us.  But, I have found ways to help control my pain and work around fibromyalgia to live the life I want to live.  I refuse to let fibro pull me down.  Others have done that, too, and we all share our ideas.  You will learn how to control the pain, too.  Just get ticked at fibro and take control of your life.  Right now, fibro is controlling you.  We are here to help.
Be sure to check out the Fibro 101 thread...the first thread on the forum.  There are links to good information about fibromyalgia, including links about malic acid/magnesium and vitamin D3 and how they work in your body.  You will learn a lot there.  Also, read back posts.  There is a world of information in them.  Don't hesitate to ask questions, either.  We are here to help you!
I'm so glad you found us and joined in.  We have a great group of people who love to help one another and, as a bonus, we really do care about each other, too.  So, put a smile on that face.  I think this might be just the beginning of  your feeling better. 
By the way, here is a link to doctors that work with fibromyalgia patients.  See if one is near you.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

New Member

Date Joined Sep 2009
Total Posts : 6
   Posted 9/3/2009 2:29 PM (GMT -7)   
I will try the vitamins immediately!! Thank You. Your reply was so caring and nice....we need that!! I wish you the very best and hope each day finds you better than the last.

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 9/3/2009 2:38 PM (GMT -7)   
Welcome to the forum, Susan I am sorry you are in so much pain

Sherrine gave you wonderful advice.

I too believe in excercise, it really helps with my stress and is good for the muscles.
Starting out slow is so important. I am a walker, somedays I am able to go one block
other days I can go 3 miles. Learning to know your limits is sometimes difficult but

I also like to do relaxation therapy, deep breathing excercises. Sometimes I do them
while I am soaking in a hot bath, or I will take 5 minutes if I am feeling tense and do
them. When I am stressed my pain level really goes up.

Many of us have a difficult time finding the right combo of meds for pain relief.
For my fibro I have been on Savella for 7 weeks, I think it is starting to kick in for me.
I woke up today feeling a little looser anyway. I am hoping it will help. When I am
flaring I take Flexeril, a muscle relaxer.

I am so glad you joined us. Come and post often

 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements

Veteran Member

Date Joined Mar 2009
Total Posts : 599
   Posted 9/3/2009 11:53 PM (GMT -7)   
Hi Susan, welcome. I am so sorry you are hurting like that. That was me this past winter. I would get into my car at the end of the workday and collapse, and cry because I was so weak, and scared. It sent me into a depression, and I didn't know what to do. I have also been experiencing daily pain that is really bad. This week I set a goal to not miss a day of work, and I am going to make it. I had to go in late today because my hands weren't working right, and I couldn't get dressed for awhile because my arms were too stiff to dress myself and I couldn't lift my legs for awhile. (I wanted to tell my dog to hold my pants while I stepped into them!) But I went in three hours late and worked my butt off, and am really proud. It's hard for me to make goals and stick to them, with fibro, and am about to tackle exercise. My boyfriend and I discovered that the high schools in our area open their pools for public swim for a couple hours, a few nights a week. So we are going to swim through the winter!

The hardest part for me about accepting fibro in my life has been learning not to beat myself up about having pain. I was raised to believe that if I had pain, I should suck it up and go on about my business. I've never felt pain and sensations that fibro brings, nothing like this, ever before, so the adjustment has taken a long time. I have never learned how to actually be nice to myself without feeling guilty, so in away, fibro has given me a gift - the ability to listen to my body, and to banish the guilty belief that somehow I did something to bring this on myself.

Welcome. Everyone here is nice and we understand.

Regular Member

Date Joined Jul 2009
Total Posts : 236
   Posted 9/4/2009 5:42 AM (GMT -7)   
Good morning Susan ,
Welcome ,,, I am so sorry you are in so much pain, I know how hard this is to live with...
I am still kinda a newbie on this board. I come here from another board ,that just had way to much negative bickering going on. its a shame... But so far everybody here is just great, very caring , and lots of good advise. .. like Sherrine , she seems to always post very positive and caring responses....and as you will find there are lots more liker her... I'm still trying to get to know everybody..
When I first started taking Lyrica it seemed to really help me.. its been about a year and a half.. I am now working at coming off it.. seems its causing more problems than helping now.. I was so used to ignoring that I did not notice this.. my family Doc came up with the thought... I was on the max dose 450 a day ... 1 three times a day... I kept telling my family doc there is more going on than just Fibro... but I can't figure out what... so his thought and I agree ,,we where not sure lyrica was really doing anything any more. so its taking me a long time to come off... as we had to stop at 1 pill of 150 Mg. as I got so sick from this Med I could not even sit up the nausea got so bad... so its going to take another month or so ... I just dropped down to 75 mg today  one a day... and praying it does not make me sick ... I'll be glad to get rid of this rash its giving me also... as its spreading all over now. ( it did this when I first started it also )
Sorry I tend to ramble..
you said you are taking Perc the 5/325 taking 2 a day... I started out on this does about 2 to 2 1/2 years ago... our bodies get used to this Med and we end up having to go up on it.. I now take the 10/325  up to 6 or 7 a day... and take Soma about 3 to 4 a day .. This combo really helps take the edge off my pain most days.. and allows me to make it through work. as I still work Full time from home I do a split shift 4 hrs on 2 off and then 4 more.. I would not be able to work If I did not have the split , and being able to work from home.. ) if I had to drive in to work every day ,, no way could I do this ) I need that 2 hrs to rest, put my feet up.. and do some light stretches for my back and neck.
my family Doc takes care of my pain Meds, and he is really good about it... I figure I may not keep the same Fibro Doc but will always have my family Doc. this why he takes care of it for me.. and he is just around the corner from my home to pick up my script every month.
I truly think your Doc should be more help with your pain meds and  not just pretty much telling you " that you can not get hooked on the pain meds and to fight it.. " Susan there is a dirrerence between being dependent on pain meds and being hooked... with chronic pain its ok to be dependent on your meds.. just like say lyrica . our bodies also got dependent on this, if you try to stop with out weaning it makes you sick .. no Different than pain Meds ,, at least that's my take on it... you have to be able to somewhat ease the pain, if he is not willing to help you , you may need to find a Different Doc. as you have just as much right to as normal life as the next person. I would be Bed Ridden from the pain if I did not have the Meds I take...I don't abuse my Meds, they allow me to have a life.. mind you my life is nothing like it used to be..( clean the house if 4 hrs top to bottom , mow the yard, wash my mothers walls. none of this )   its a new life. with limits I have to accept. I have Flares like every body else and my Meds wont work so great then.. but still ..
its hard but can be done... I have found its vital that you keep moving , even just walking in place, stretches, if we don't keep moving it makes the Fibro so much worse..
I am looking at diet also , we need to try and eat healthy , as I have found certain foods make me feel worse. ,still working on this area. though...
Hot bath or shower are great helps. heating pad and Massage Chair are a couple of my best friends.  sleep... LOL.. ya this is good to if you can get some . I laugh because its such a struggle for me.
Susan ... I am sorry this is so long... like I said I tend to ramble. there is so much to share with each other.
Remember you are never alone in this, as we here do understand ...
I send you soft hugs. and prayers for a better day ..
I do hope you get some relief , keep us posted if you would ..
Take care  turn   turn turn

Spirit ~

Regular Member

Date Joined May 2009
Total Posts : 138
   Posted 9/8/2009 1:13 PM (GMT -7)   
 susan, you and i have so much in common! i, too live in ky. i have had fibro for about 11 years. my daughter left for college last year. just a few years after being dianosed with fibro i could no longer be the kind of mom my daughter was used to having. there were many days i never got out of bed because the pain and fatigue were so bad. my daughter was so angry that i was sick and often took this out on me. she has matured alot and is better about understanding that i cant help being sick. i know how difficult it is to deal with all this. i deal with depression and anxiety as well. are you on an anti-depressant? i take wellbutrin. it seems to help. fairly recently my dr. put me on a muscle relaxer, zanaflex. it also helps, especially with sleep. i also take hydrocodone 2 or 3 times a day. that also helps with my restless legs syndrome. i have been on this dosage for several yrs. and have not had to go up on my dosage. i think many drs. are so afraid of lawsuits even patients misuse or become addicted, that they undertreat pain. i think that is so wrong. i think finding a new dr. is a good idea. i dont know where you live in ky., but my internist is in lexington. she has alot of patients with fibro and seems to know what shes doing. if im allowed to give you her name i will. ill check with one of the moderators. let me know if you want it. i hope you get relief from your suffering soon. take care.

New Member

Date Joined Sep 2009
Total Posts : 6
   Posted 9/9/2009 7:48 AM (GMT -7)   
shakehead   shakehead
Hello and thank you for your words....I am crying as I type...you really touched me. I wonder if we are near one another?? I am new hear, so I have not gotten to read alot of the back logs yet, but people tell me to push on...I WANT TO!!! My heart and mind want to, but I CAN NOT. I am just a total MESS. I truly hope I hear back from you!

Regular Member

Date Joined May 2009
Total Posts : 138
   Posted 9/9/2009 7:55 AM (GMT -7)   
hi susan, its me again. the one from ky. please let me know if you want the name of my dr. who practices in lexington. i will be glad to give it to you. i have not checked with a moderator, but i assume the drs. name will be deleted if its not allowed. i will check back with your post later or you could post a new post called " cbear, help me" and i will answer.

Nana Monster
Veteran Member

Date Joined Jul 2009
Total Posts : 957
   Posted 9/9/2009 10:46 AM (GMT -7)   
Hi Susan,
    You've come to the right spot. I'm kind of controversial as I've weaned off dx'd meds and have gone totally
herbal. I have a link "herbal relief from pain" and there's a second link "nm and others for herbals". I've been
doing Super Cissus Rx, Malic Acid and Bio-Sil. They have worked on rebuilding muscle, ligaments and tendons;
detox the body and rebuild callogen. I've just added B-complex to my mix for energy and it works better
than I thought. I'm now on month 5 with the mix and have only taken 2 doses of Aleeve for pain. I 
eventually want to try white willow bark for pain and see how it works.
     I hope you find the mix that works for you as it took me years of popping meds before I was lucky
enough to find my answers.
        Nana Monster

New Member

Date Joined Sep 2009
Total Posts : 6
   Posted 9/24/2009 6:39 PM (GMT -7)   
HI CARE BEAR!! hope you are there...I am just out of the hospital, so I am behind on replys!! Please , yes, I would love the name of your doctor in Lexington!

New Member

Date Joined Sep 2009
Total Posts : 6
   Posted 9/25/2009 10:11 AM (GMT -7)   
Hi Susan, I know your pain! I had to quit my job 1.5 years ago. It is very hard to change life and cope with all the issues of fibro. I live in Oregon so don't know your docs but for me my rheumatologist and PMHNP are most helpful. One has to realize to that if pain meds are needed then so be it.

To give you an idea of what one person takes daily include: AM: Cymbalta 120 mg ( Lyrica quit working for me after 5 mo.), Prednisone (fm 60 mg now at 7 mg), hydrochodone 5/325 1-2 3x day, and oxycontin if needed 1 am and pm, Vit D 2000IU day. A friend of mine is on the phetenol (sp?) patch and changes it every 2 days instead of 3 per her doc and that seems to help her. I haven't tried it.

At nte I sleep on Klonopin 2 mg, Ambien CR, hydrochodone, and Melatonin 1/2 mg.

If your doc won't help your pain control time to change to someone who will. I searched for my professionals for 4 years and feel that I have the people that believe in fibro and mye pain/fatigue.

Oh, my orders are to lay down 3 hours in the afternoon and accomplish 1-2 items on my "to do" list a day if possible. I am fearful of exercising for fear of throwing my body into a flare.

I tried Xyrem for sleep but results were negative not necessarily due to the med but withdrawals which should have been done prior to first dose. I may try it again in January. Xyrem has helped individuals so they are off all meds and feeling good about life again with stage 4 sleep. Oh, how great that would be.

I am on my work disability and trying for SS disability benefits. If anyone has received disability any help would be much appreciated.

From Oregon, Donna
Take care. You are not alone.

Regular Member

Date Joined Sep 2009
Total Posts : 124
   Posted 9/25/2009 10:54 AM (GMT -7)   
donna, hire an SS disability lawyer like binder and binder. they know the ropes. flat fee only if you win.
fibro, migraines, ibs

Regular Member

Date Joined Aug 2008
Total Posts : 326
   Posted 9/25/2009 11:09 AM (GMT -7)   

Where are you at in Oregon? Just curious since I live in Portland.
Curious people are interesting people...I wonder why that is.
~Bill Maher

Regular Member

Date Joined May 2009
Total Posts : 447
   Posted 9/25/2009 12:45 PM (GMT -7)   
Hello I have had fibro for 16 years now and our youngest it 18 she looks at as some thing that made her grow up to b able to look after herself she knows how to cook a good meal do all the washing clean the house. In fact I have missed her since she moved in with her boyfriend [ they get married next May] our 3 boys also see the illness as some thing that made them better men they know what it is to be ill so they all look after thjem selves and can do all the house work if needed they do their share now an never complain their ladies thank me for making them the men they are. When we can not look after our families as we want to it is hard and we feel like we are letting them down. But you need to look after you so that you can do something for them, we need to watch out health more than anything fretting about what we can not do will only lead to us not being able to do anything. Stress is our emeny.
fibromyalgia, chronic fatuigue, IBS

Regular Member

Date Joined Feb 2007
Total Posts : 55
   Posted 9/25/2009 1:21 PM (GMT -7)   
Hi Susan,
You have many friends here in the forum that you will get to know soon. It's such a wonderful place where everyone knows what you're going through. I've had Fibro officially now for almost four years but I am sure that I had it much longer. Was aways at my GP having all different kinds of test done over the years. Even when I was in nursing school many years ago, I always felt something was wrong with me. I think emotional stress made my fibro much worse. I am finally getting to the point where I'm finding peace with my emotions. But I know how much being depressed can hurt and make our pain so much worse. I'm so sorry that you're going through so much pain now. If your doc is afraid of pain meds, find some other doc that understands fibro better. It's not easy, but having a doc that believes in you is a major step. I'm lucky that way. I have a great GP! I worked in hospice for a few years and I know doc's are afraid of prescribing the narcotics, even with hospice, some doc's wouldnt prescribe them. Someone said it before...you don't get addicted to pain meds, remember you DO HAVE THE PAIN! There is a difference being addicted and having them for pain control. Fibro pain is so unpredictable, that is the hardest part for me to understand. One day you feel like taking on the world and the next day you feel like the world has taken you on and lost the battle! Just remember that each day is a new day and there are brighter days coming! You will get through this! Enjoy time with your daughter now while she's home. Even is if's just sitting together watching a movie or just spending some time outsidel I have learned to stop and look for the things I'm greatful for. I even have started a greatful journal, everyday, just write down something that you were greatful for, it could be something real simple like my daugthers laughter or some hot coffee, it's not that hard to find once you start looking. Just hang in there and keep reading the posts, it will help! I will say a prayer for you too! We're all in this together. You are not alone!

Gentle Blessings
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