No one told me fibro pain could get this bad!

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PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 3/8/2010 3:20 PM (GMT -7)   
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!
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,

Post Edited (PattyLatty) : 3/8/2010 3:27:31 PM (GMT-7)


college coaches wife
Regular Member


Date Joined Mar 2010
Total Posts : 61
   Posted 3/8/2010 3:28 PM (GMT -7)   
Have you tried taking one Lortab WITH the Neuronton? For some reason they seem to compliment each other. Either one by itself does not do much for me. Hope this helps.

vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 3/8/2010 3:38 PM (GMT -7)   
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
fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: valium Advil


college coaches wife
Regular Member


Date Joined Mar 2010
Total Posts : 61
   Posted 3/8/2010 3:41 PM (GMT -7)   
Hate to post back to back, but left out something. Take those 2 meds in the day. Well actually, because it settles the pain, it will help you rest better at night also. And the answer to your question about fibro and pain. OMG - welcome to the World of Pain and Fatigue. I hate to go to bed at night because just when things are getting better, its time to go to bed - then you wake up worse than when you went to bed and have to start all over. Hate to put a damper on things. I'm trying Savella - 3 days now. I'm on the starter packet. A fibro Dr here starts all his fibromites on this. Different results for different people. I'm trying to stay positive and open-minded about it. I haven't been on it long enough to draw a conclusion. Anyway, hope things get better for you.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 3/8/2010 3:44 PM (GMT -7)   
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


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

Post Edited (Sherrine) : 3/8/2010 3:47:03 PM (GMT-7)


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 3/8/2010 4:23 PM (GMT -7)   
Hi Pat, I post occassionally on the lupus forum because of my MCTD. I can pretty much
tell my lupus flares apart from my fibro flares. When I was on a prednisone my inflamation
was reduced so the pain I felt from lupus was controlled. Prednisone does nothing to
help fibro pain because fibro is not an inflammatory disorder, it just feels like it is.

Fibro can cause my joints to ache, when I am flaring I hurt allover. Savella a SNRI helps
with the pain some and using flexeril (cyclobenzaprine) a muscle relaxer helps with the
flares.

Insomnia is something that so many fibromites suffer from. I hate it, I ride the sleep
rollercoaster . Fatigue and stress certainly add to the pain factor. My fibro affects my
MCTD and vice versa. Here we use the phrase Keep on Keep'n on. Take one day at a
time and stay as positive as you can, Hope you find relief soon!

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/8/2010 4:34 PM (GMT -7)   
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
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.


college coaches wife
Regular Member


Date Joined Mar 2010
Total Posts : 61
   Posted 3/8/2010 6:37 PM (GMT -7)   
Usually when we move, the university takes care of the packing and moving. Moving in is a little different because I have to unload boxes stacked to the ceiling - thank God my husband helps. He's usually on the road recruiting or coaching. We have moved 5 times in the last 8 yrs. This has no doubt been very taxing on me - seems like with every move the fibro gets worse than before. This move is going to be really tough since we are moving from an apartment to a house. I'm having to pack and unpack everything myself. Ugh! We are hiring someone to come load and unload. We should close next week sometime. Wish me luck and good health!!

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 3/8/2010 8:00 PM (GMT -7)   
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.
Lyme Disease, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L4 and L5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

autoimmunediseasesgfliving.blogspot.com


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 3/8/2010 8:28 PM (GMT -7)   
Pat, I do think it is possible to have dual flares going on. My fibro pain feels bone crushing,
deep aching, like my extremities are being crushed in a vice when I'm flaring. When I
have a lupus flare my pain is radiating heat and I'll get pink blotches on my body that feel
like they are burning, RA is part of my MCTD and my hands, knuckle area will swell.
It is complicated . To me pain is pain no matter what disorder you have. The big thing is
getting symptoms treated and finding relief.

Fibro will not damage muscle or joints, lupus and RA can that is why it is so important for
a doctor to treat you if you do have an inflammatory process going on. I'm on Methotrexate
for that.

Hugs, Robin

PS Good luck on your move coaches wife, Becareful not yo overdo
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 3/9/2010 6:59 AM (GMT -7)   
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 wink

Pam
Conditions: Fibromyalgia, Chronic Pelvic Pain, FAI, Reynauds, IBS, Interstitial Cystitis, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (Surgical Menopause and drug related), plus physically unable to vomit due to Nissen, and I have extremely tiny veins...a joy for blood work or IV's)
Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT
Medications: Oxycontin, Tramacet, Cymbalta, Flexeril, Clonidine plus Vitamin D and Multi-Vitamin daily


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 3/9/2010 7:27 AM (GMT -7)   
Hi Pat and welcome. It has to be tough for those of you fighting lupus and fibro. My joints do feel tender sometimes, especially my elbows, knees and shoulders but there is no swelling or redness so it must be the tendons and ligaments. Fibro pain is weird cause it can change so often from burning, aching and stabbing. You really never know what you are going to get from one moment to the next.
 
Hope it gets better.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/9/2010 9:01 AM (GMT -7)   
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
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 3/9/2010 10:17 AM (GMT -7)   
Pat, My fibro seems to give me the worst overwhelming pain. Lupus, RA, and Scleroderma
are scary to me because of the potential damage it can cause. My scleroderma has
caused some disfigurement due to morphea patches and areas of atrophy. I've had issues
with high liver enzymes in the past but my levels are good now.

There are so many people worse off than I and I consider myself lucky. Fibro is a big
thorn in my side. So many people do not realize the pain of it. I'm never pain-free but I
am learning to cope with it. Somedays are certainly better than others. Despite all of it
I consider myself to be happy and I live a good life.

Pat, I hope you will be able to get into a regular excercise routine. Walking really helps
me. It must of been difficult not to because of your foot. Wishing you great days ahead!

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


college coaches wife
Regular Member


Date Joined Mar 2010
Total Posts : 61
   Posted 3/9/2010 2:21 PM (GMT -7)   
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!

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 3/9/2010 2:46 PM (GMT -7)   
Pat, lack of exercise can cause a lot of problems with fibro.  You will be stiff as a board and I think you have found that out!  BUT, if you are going to start exercising again, please start out slowly.  Don't jump right in because that can cause more pain.  Do a little.  If you feel tired or are hurting more in an area, then it's time to stop. 
 
When I started walking, I only could go four houses down and had to turn around and come back.  The next day I could go a little further, etc.  You have to break those muscles back in!  Before you know it, you will be doing great and feeling better!
 
Sherrine
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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/10/2010 11:19 AM (GMT -7)   
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
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.

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