Yesterday 10/9, I was diagnoised with fibromyalgia. So begins my journey. Where do I start learning about what and what not to do. I have had a gastric bypass and the docs don't want to give me anti inflamatory meds. I am on oxycontin 40 mg 2 a day but it doesn't last long enough. I have had 6 surgeries 3 for cyst 1 hysterectomy, gastric bypass and tummy tuck. Ever since the tummy tuck in 2001 I have gradually increased in pain all over my body. Fatigue is my constant companion (with 3 kids all under 7 it's a nightmare)

Where do I start. Yesterday he gave me a prescription for water aerobics and gave me a lesson on managing my daily duties and read off my life almost to a t without knowing me. There is alot of info out there and I started with this message board and love the info I have already got.

Meds taking now - oxyconting 4o mg 2 a day Elavil for migraines 60 mg once a day Vioxx and Soma. What should I ask for to help reduce the pain all day and what is the best meds to help me sleep. I wake up several times a day, sleep alot if I can my 2 year old curtails that.

Any info a blessing.

Karen

Hi Karen.

I too was diagnosed with fibromyalgia yesterday. It sort of was a mixed blessing for me. I am not thrilled to have to deal with this pain, but I am thrilled to FINALLY have an answer to all of this pain.

I chase two kids--a five year old and a two year old. I am on Lexapro for depression (have become really depressed months ago due to the pain, and not being as active as I usually am) and Trazodone for sleep. I called my doc back today, and asked for something for pain on really bad days. He never called me back...ugh!

If you are interested in e-mailing me directly, you can at luann53051@yahoo.com. Maybe we can work through becoming more pain free together?

My doctor said to start educating myself on fibro, so I went to the library today and got every book I could on fibro. Just carrying them out hurt my arms and back..ha ha! Anyway, for now, I am just trying to remain positive. I went through some scares with MS testing and other horrible things before finally being diagnosed, so considering the alternatives, I will take fibro positively for now.

And...anyone out there....please let us know where to start.

Thanks,
Lu Ann

Hello there, and welcome!

Sorry to have you come in this way, but hopefully you can learn a lot faster than most of us have had to! I really believe the best way to start understanding all that is, and can become involved in your life from now on, is to learn all the info you can. Great beginning w/ the books. The internet and of course, these boards, are also wonderful, little boards w/ huge amts of info on alot of lifes curves!

Good luck, and never be afraid to ask for help. Support is a very important key in dealing w/ fibro, as you are learning already.

Relax & laugh daily!!!

Karmon

Welcome to you two newbies! I'm a ten year veteran so I hope I can help you. One thing that immediately surprised me, karenshope, is that you're taking oxycontin twice a day. I know the pain is severe enough that you need it, but I am surprised that your doctor is giving it to you, at least if he's giving it to you long term. My experience has been that doctors don't like to give narcotics to fibro patients because of fear of becoming addicted. My doctor does give me Lortab, but only 30 at a time and he monitors me very closely on those. There are a lot of medications that I've tried, I've been on anti-depressants for the last 10 years, I think they're a must for people with fibro, you may have to experiment for a while to find one that really works for you. I've also found that muscle relaxants help a lot, especially to let you sleep at night. I take mine at least an hour before I go to bed so that I am really relaxed and sleepy before I get in bed. If I don't do that, I'll get in bed and be in so much pain and so restless that I am wide awake so it does me no good. I've taken Vioxx and am now on Celebrex for the joint pain. But again, you may have to experiment to find just the right one for you. I sleep with a lot of pillows, under my knees, under my elbows etc., to ease the pressure on my joints. You might want to try Yoga or some other form of gentle stretching/exercise to keep you moving, but not cause any impact on your joints. I hope you both find some relief soon, stay tuned to this message board, there are a lot of caring people here that will help support you and get you through the tough days.

Thanks for the replies. painsucks my doctor gave me the oxycontin before she knew I had fibr. I have a nerve trapped from a tummy tuck I had after the gastric bypass.

She does not want to give me meds that have aspirin in it, since I have had the gastric bypass it is easy for me to get ulcers. So I can't take the anti-inflamatory meds. I was taking up to 8 vicodin's and that was going to destroy my liver. I have not gone back to her yet since I have been diagnosed by the rhuemotory doc. I use to have endometreosis so I have always lived with pain. But this all over the body pain is driving me nuts. I have always slept with a body pillow and it really helps to keep the joints from touching.

Do you wake up with your hands locked in a semi fist position? It takes a few minutes to stretch them out and it hurts so bad.

I am also taking vioxx which was just a trial thing to see if that would get get rid of the pain. If it did then she would put a check in the box for arthirtis. I don't think it works and I can't stay on it much longer.

Next question. Am I depressed? I never thought of my self as being depressed. I am short tempered lately due to the pain so is that considered depression. Thant's a new one for me. Do I have to take anti depress drugs also to deal with the pain or are they to keep me sane? lol

Thanks for the reply. I have been on the net for days since I was diagnosed last week. I have some blood work to due before I go to see my PCP. I have to get shots every 2 weeks for anemia.

Karen

Karen,

Bless your heart! You really have been having a tough go of it. It makes sense now as to why you're on the oxycontin. I am actually allergic to aspirin so I've had to be careful with a lot of the anti-inflamatories too. I also suffered for years with endometriosis so I feel for you there too. I had a hysterctomy back in 1990, that's the best thing any doctor ever did for me!

As for being depressed, I'd never thought that I was depressed either. My doctor gave me a quick test in which he had me answer several questions, I was surprised at how many of the questions I answered yes. Well, to be in pain all the time does indeed make a person depressed. However, I think the anti-depressants help for more than just depression. I've read over the years that there are neurological effects with fibromyalgia as well, I think that the anti-depressants help with that too.

I can't recall waking up with my hands clenched in semi fists, but my hands are usually very stiff and quite swollen plus my right hand is very tingly and numb most of the time.

If you'd like to email me directly, please feel free to do so. My email address is dcunningham@rqn.com

Hang in there!

I am glad you have been seeking a lot of information. That is the best place to start. I agree about fibro affecting your emotions to the point you need some extra help dealing with them. Fibro does tend to get very depressing at times (especially during flare ups). I have taken anti-d's for 2-4 months @ a time, depending on how I was feeling, but have always been able to stop them after a short time and not need them for a long time. Now, that is different. Ihave been on them for close to a year and no sign of quitting in the near future. All of us have some depression normally anyway, the pain and frustration of fibro just seems to make it worse. Hopefully you don't need that type of aid yet, but if you feel you do, by all means T/T your doc ASAP.

At least you have these boards to help you get through, and give you alot of sound advice or opinions.

On the hands issue, do you, or may you, have carpal tunnel? I do, and when my fibro got really bad the last couple of years, the carpal tunnel got very severe. The numbness and stiffening are good indications, but are also a good sign of arthritis. Just an idea.

Take care, and feel great,

Karmon

Thanks Karmon and painsucks(just love that name) for the info.

Yes Karmon I have carpol tunnel. Have had it for several years. A couple of cortisone shots. It has gotten worse when I was working but I quit for awhile since we were adopting. I had to be a stay at home mom to get a baby. The adoption was final last week. YEA!! Trying to get her potty trained because I can't stand the pain in the morning having to change her diaper. Can't seem to grip the tabs.

I am on elavil 60mg a day, at night to suppress migraines but it is used for the treatment of depression (according to the label warnings). I had gotten up to 120 mg a day and that kept me in bed. I want to find something else because I crave sweets. Not good after having the gastric bypass. I learned from one of the message boards here that it causes sugar cravings. That explains the midnight snacks. I wake up several times a night in pain and I crave sugar.

Thank God I found this message board. I am learning more and more. I will fight this pain and will do whatever it takes to get it under control.

Thanks again for the info. My email address is karyn_34@yahoo.com if you also want to send me some emails. I will be sending some direct questions to you guys.



[This message has been edited by karenshope (edited 10-14-2003).]

Eat right for your blood type!!! I too have endo and fybro that was set in after 2 car accidents. But once I started eating the foods that are good for my blood type I dropped my pain meds foy hydrocodone 10's down to 5's and from every 4 hours to evey 8 to 10 hours

Dear Karen,

Congratulations on the adoption! I am expecting my 3rd grandchild and just found out that this one is a girl! We couldn't be more excited, we have two sons and two grandsons, it's about time we added some "pink" to the family!

I know a lot of the meds we take for fibro cause various cravings and weight gain. I've taken several different anti-depressants over the years, and have gained quite a bit of weight. My doctor just recently changed me to Celexa, he said it is more "weight neutral" than some of the others. It's been working pretty well for me. Another thing that you might find helpful with the IBS is Fiber Choice, an over the counter chewable orange tablet that is much easier to take than drinking Metamucil or something like that. I just take two of those each evening, they don't seem to cause the gas and bloating that some fiber treatments do. A lot of my meds have constipation as a side effect as well so the Fiber Choice really helps.

Have you experienced any loss of balance or equilibrium? I have quiet a problem with it so I have to tell you what happened to me yesterday. It's funny now, but it hurt really bad yesterday! I have two Rottweilers (and they're as gentle as lambs for anyone that might be concerned that they're killer dogs) and every morning I take them outside and let them run while I have my first cup of coffee. Yesterday morning, I was going up the two steps on my back porch to go back inside and I lost my balance, fell and slammed my face into the house! Now it really did hurt, I skinned my knees, my knuckles and stubbed my toe too, but I've got a nice shiner on my right cheekbone that looks like I've been in a prize fight. My husband asked me why I was being mean to the house and hitting it with my face, my sons bot got such a laugh out of it (of course they all made sure I wasn't hurt too badly...except for my pride) and the dogs looked at me like "why'd you do that"? I always try to be really careful because my balance is bad, but this time I was in a little too much of a hurry and wham! Anyway, sorry for rambling, I just wanted you to know that sometimes the best medicine for this dang disease is the ability to laugh at yourself.

You can alleviate your pain and fatigue with thyroid hormone since fibromyalgia is a manifestation of a thyroid disorder...namely hypothyroid.

I was diagnosed with fibro and am symptom free with thyroid hormone.

My thyroid labs were all normal by the way... I pursued the issue and a doc gave me a trial of armour and now I am symptom free.

I was diagnosed with Fibro over 2 years ago and it seems the only time I'm symptom free is when I'm pregnant!
Doc says pregnancy hormones react in a way that keeps fibro at bay, at least for 9 months anyway!

I'm on Paxil, but I'm not on it for any type of depression, but for help with my sleep. I take it at night and it relaxes me. If I hurt, I take a Flexeril with it. I don't find the Flexeril works that well, but it does help me sleep better than when I just take the Paxil.

Karina

I was told yesterday that I had Fibromyalgia. I also have phernial neuropathy, carpual tunnel syndrom, sleep apena. I also found out that I have four aunts and a first cousin with this same thing, so it makes me think that it may be hereditary. Besides my sister-in-law has it along with lupus. So, they are trying to help me come to terms with this thing. But, I need advice on how other people handle this without being tied to me in someway or the other, that would honest on what this stuff will do to me. please any and all advice is welcome.

I was at my PCP dr. today. I told him about the achiness & pain I'd been dealing with lately, and asked him if he thought I might have chronic fatigue, considering I have been complaining aobut fatigue for quite awhile. The pain started just since I went off morphine for TMJ (one area that's virtually pain free, by God's grace). He immediately began checking my pressure points, and several of them were very tender. He said considering my history of chronic pain, it is likey that I have fibro-. He is referring me to a rheumatologist for further diagnosis. So, this is fairly new to me, but I have read quite abit on chronic fatigue, and I understand they are similar.

I look forward to learning with the rest of you who have been recently diagnosed. We can all use the support.

Hello, My name is Kellye and I feel for anyone with this. I have spent my whole 2007 about to lose my mind. I have been in a doctors office 3 to 4 times a wk. That's different doctors because they all look at me like I am a nut. I walk in tell the Dr. somethings wrong with me I am tired all the time. I hurt non-stop all over my body like someone has whacked me with a baseball bat, don't sleep, my life has been turned upside down. The first thing they say is your depressed.Take these antidepressants and you will be fine..in other words its all in my head. I was at the top of the world before I had my breast lift and implants 2 yrs ago after that I went down hill fast..Someone told me that plastic surgery can cause you to have fibro and chronic fatigue and to get over it you have to remove your implants...The last doctor I went to see said I had both and I would just have to live with it because there is no cure..I am on no meds..I live in hell everyday, I am a mother of 4 and have a husband of only 2 yrs and I am making there lives hell.. I cry everyday, pray everyday that my life will be filled with smiles and laughter from my children and my husband again and that I will be able to play with my children and be the wife I once was to my husband..but the way it looks it will never be..I don't know what to do and apparently nether does any of the 20 to 30 Doctors that I have seen. Still searching for the answer in Mississippi....

Hello, My name is Kellye and I fill for anyone with this. I have spent my whole 2007 about to lose my mind. I have been in a doctors office 3 to 4 times a wk. That's different doctors because they all look at me like I am a nut. I walk in tell the Dr. somethings wrong with me I am tired all the time. I hurt non-stop all over my body like someone has whacked me with a baseball bat, don't sleep, my life has been turned upside down. The first thing they say is your depressed.Take these antidepressants and you will be fine..in other words its all in my head. I was at the top of the world before I had my breast lift and implants 2 yrs ago after that I went down hill fast..Someone told me that plastic surgery can cause you to have fibro and chronic fatigue and to get over it you have to remove your implants...The last doctor I went to see said I had both and I would just have to live with it because there is no cure..I am on no meds..I live in hell everyday, I am a mother of 4 and have a husband of only 2 yrs and I am making there lives hell.. I cry everyday, pray everyday that my life will be filled with smiles and laughter from my children and my husband again and that I will be able to play with my children and be the wife I once was to my husband..but the way it looks it will never be..I don't know what to do and apparently nether does any of the 20 to 30 Doctors that I have seen. Still searching for the answer in Mississippi....