No one told me fibro pain could get this bad!

Hi,

I usually hang out in the lupus forum but think I need to join your group in order to network with you guys and get a better handle on my fibro.

I can't take lyrica so my doc put me on lortab and it takes two pills and two hour for me to get out of bed in the morning. I've always hated to be touched and suspect I've had fibro most of my life, but wasn't diagnosed until about six or seven years ago. Had a sleep study and take Neurontin for restless leg, which I understand helps fibro, as does getting a good night's sleep. Lately, though I've had awful insomnia and have even been taking Lunesta & still can't sleep. I don't know which is the egg and which is the chicken. Lack of sleep can cause fibro and fibro can cause lack of sleep. Which is it?

My question relates to my lupus, which has gotten much much better over the past year. The awful fatigue, my labs, and many other symptoms are 80% better. I still, however have burning pain in my joints. Can that be caused by fibro? I have pain just about everywhere, but especially in my arm & leg muscles, my shoulders, elbows, hands, fingers, knees, and feet. I'm worried that my lupus is flaring and hope you guys will tell me that fibro causes joint pain. I hurt so bad and have trouble standing up. Once I get up, I can hobble around, but feel and act like I'm a very old woman.

I've always known that I'm tender to the touch, but I never knew that fibro could hurt this much!

It's good to have you all to come to. Thanks.

Pat

P.S. Your fibro 101 site is terrific!

Hi Patty...I have burning pain in my muscles but it can feel like it's in my joints also even though it isn't.  I think it just radiates when in a flare and everything hurts....joints, muscles, tendons...everything.  At least that has been my experience.  Others describe their pain as stabbing, pulsing, throbbing.  Mine is burning.  I don't take Rx drugs at all because I don't like how I feel on them and I am also allergic to most narcotics.  Wish I could help more, but all I can do is relate to the kind of pain you are feeling and that in a flare, I feel it in my joints also.

Donna

Hi,Pat, and welcome!  Many have burning pain with fibromyalgia.  It can feel like it's your joints but it might not be.  Fibromyalgia affects the muscles, tendons, and ligaments.  These help to move your body parts.  If they are tender around the joint areas, it will feel like it's your joints but it really isn't.  Fibromyalgia does no damage to joints, either. 

 

I'm sure the stress you are under right now, thinking it could be your lupus, could be making things worse.  Also, fibro waxes and wanes but the flares can last a day or months.  Try to relax about it.  If you are still concerned, see your doctor.  You do want to be sure.  If your doctor doesn't see more active lupus, then it most likely is fibro.  Let us know what you find out!  We really do care about you.

 

Thank you for the compliment about Fibro 101, too.  You made my day!

 

Sherrine

Wow! You guys are quick to respond. Hi Robin, I didn't know you were over here too. Sucks, huh.

It's good to hear that everything I'm going through can be caused by fibro because it means only dealing with one thing at a time. I suspected as much because I thought it might be a coincidence to have a fibro and a lupus flare at the same time.

College Coach's wife, I think I may try taking some neurontin in the morning when I wake up. I've hesitated doing so because it can make me drowzy, but if it works I'll still be better off than I am. A pharmacist told me that neurontin and lyrica are nearly the same drug, but lyrica didn't make me drowzy. By the way, I moved a year and a half ago, and even though I hired young folks to help me pack and unpack, and a mover to move us, it just about killed me. I don't know how you do it.

i'll talk to my neuro about savella. I'll google it because I don't know anything about it. I tried Lyrica, and though it helped some, it started causing weight gain and I've lost 25 of the 60 pounds I gained while on prednisone and my body has been complaining about the extra weight, i.e. my knees are real unhappy with me, so I'm not willing to take something else that will not only hinder my weight loss, but cause me to gain again, no matter how much I hurt.

Thanks to all of you.

Pat

Hi Pat,

I'm sorry you're in so much pain.....yes, it's difficult to disentangle all of the symptoms when you have more than one chronic illness to deal with. But fibro can hurt A LOT all by itself, unfortunately. I have had all sorts of different pain with fibro: burning, aching, stabbing, throbbing...you name it!

I'm currently taking Lyrica and Cymbalta together, plus I'm on the fentanyl patch (25mcg/hr) for my lower back pain (DDD) which seems to help a bit with the fibro pain as well. The Lyrica + Cymbalta combo does seem to help a lot; I'm on a high dose of Lyrica (450mg/day) plus 60 mg of Cymbalta. I understand about the weight gain thing, believe me! But for me I was just in too much pain....I need something that could control it, even if it makes it harder to lose weight. Because I'm still trying to work full-time.

I hope you find something that works for you! Feel better soon!!
((((((hugs))))))
JoAnn

P.S. Good luck with your move and good health to you, college coaches wife!
P.P.S. I post in multiple forums too: here in this forum in addition to lupus; also in the lyme, celiac, and chronic pain forums. Occasionally in the thyroid, MS, or RA forums as well.

Hi Pat and welcome to the Fibro forum. I can relate to what you're sayiing about the pain in/around the joints. I've probably had Fibro for most of my life, but doctors who saw me told me it was osteoarthritis and to take X-strength tylenol for it (which of course did nothing).

I was diagnosed officially last year and I also have other pain issues that are not related to the Fibro I tried Lyrica as well and suffered terrible side effects with it, including horrendous weight gain. I finally told my doctor I had to stop, as the weight gain, combined with blurry vision and dizziness was too much to manage (I was still working fulltime at that point).

I'm on Cymbalta now, 60mg, twice a day. I also take Clonidine for the hot flashes and massive sweating I'm going thru - from side effects of other drugs, and possibly menopause related, as I went into surgical menopause in 2008 (but never had hot flashes like the ones I've been getting lately!). The Clonidine has really helped me a lot with far fewer hot flashes than before, plus I'm sleeping again - I had terrible insommnia.

Stick around here and you'll get great information from everyone. Fibro seems to affect each of us a little differently, so I'm sure others can more closely relate to what you're going thru

Wishing you all the best

Pam

Thanks to all of you for the warm welcome and all the good info. Coach's wife, I took 600mg of neurontin this morning with a lortab and an hour later, it really seems to be working. If that works, you're my new best friend. :)

Hi Robin. I don't know how you manage this, lupus plus RA. Do you ever have periods where they are all quiet at once?

I suspect I know what has brought on this flare. After 6 years of being moderately sedentary because of my lupus, I spent 6 weeks in bed starting the first of December so that my foot would heal from a surgery I had on Dec. 7. When I finally got out of bed, I didn't go very far. I'm retired, and I spend a good part of every day in bed reading, watching tv and knitting. I wonder if putting my poor old body in bed for that amount of time has just been too much for me. I know that exercise helps control fibromyalgia, and I've had little to none for a long time. I bought an elliptical stationary bike last fall and was using it regularly but had to stop when I had surgery. Hopefully I'll be able to get back on it real soon. I sincerely feel my body tell me to move even though I'm too stiff and tired to do so, but I'm going to have to push myself. I think my daughter is getting married in a few months and I'll be busy planning her wedding, so I must do whatever I can to get out of bed and get going.

What's the most worrisome about this is that I've been on the road to recovery with lupus. I just don't need something else to get me down after I've worked so hard to get my lupus quiet. But I'm a pretty positive person and I know I can beat this.

I appreciate having you guys to talk to about all of this. You really have an active and friendly forum.

Pat

Oh, PattyLatty,
Woo-hoo!!! I'm so happy the Neurontin/Lortab combo works. My new Dr doesn't like giving narcotics - says he has been burned before. I would have felt better if he would have just lied and said he didn't think it would be good for me or whatever. So, I just live with my Neurontin (300 mg 2xday) which he also reduced and am trying to do best I can. I was really insulted by his insinuation. I'm wondering where his best interests lie - not for me, that's for sure. Anyway, PattyLatty, I'm just thrilled for you. By the way, do you wanna help me pack? Ha!

My rheumy got me in yesterday and I had a pretty amazing appt. I took my husband with me and that always seems to get their attention. After we talked he examined me physically and I could hardly bear for him to touch me. He did blood work and told me to try to get back on Lyrica - a low dose to see what that does. He ordered physical therapy (which we had been waiting for my foot to heal from surgery before scheduling that) and told me to start water walking. I'm going to be a good girl and do everything he told me to do. He also wants me to go back in next week for a B-12 shot and a kenalog shot. I SWORE I would never take prednisone again, but with this much pain I'm willing to try a one time shot.

He showed compassion, concern, and was very thorough. I'm so lucky to have found someone like him. Plus I never have to wait more than 5 minutes in his waiting room.

He explained fibro in a way I've never heard it explained before and let's see if i can repeat what he said. He described turning the music up full blast and asked what that would feel like .... it would drive you crazy. He then said that it's as though every sensation in my body has been turned up full blast and every sensory feeling is magnified. Wow! That's exactly right. It makes my tendonitis hurt more, my foot hurt more, the osteoarthritis in my body to hurt more, my lupus pain to be magnified, etc. I thought that was a pretty good description.

Sherinne, I totally agree with what you said and I need to force myself to start moving. He told us of a study that seemed to prove that fibro patients who exercise have less pain than those who don't.

And Coach's wife, no thank you. I do not want to help you pack! But I do hope you get lots and lots and lots of help. And take your time putting your house back in order. It took me a year and a half to completely clean out my garage. And I still have a couple of boxes in my office that need to be dealt with. So what.

Banned, I'm sorry you feel so bad. I agree that tramadol doesn't do too much. I've been told by my PCP that if you take it round the clock and keep it in your body it tends to help more. But I know it doesn't do what lortab does. And one 750 lortab only does half the work for me. I need two but won't take 2 at once.

Thanks to all of you. Have a good week.

Pat