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Posted By : Sherrine - 1/1/2011 11:17 AM
In the past several days there have been members mentioning steroids/prednisone as causing more pain with fibro.  I was hit with fibro the day I took my last Prednisone from a dosepack.  The pain as never left me...and it's been almost 24 years.  So, I'm wondering, how many of you have had prednisone or other steroids bring on fibro or cause you to flare.  Even if you have mentioned this before on the forum, please do so again so we have the "record" all in one place.  This could be interesting!
 
Sherrine
Forum Moderator/Fibromyalgia
************************
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) : 1/1/2011 10:47:04 AM (GMT-7)


Posted By : hippychick79 - 1/1/2011 2:45 PM
That's quite interesting. I had to get two decadron shots two week ago because of a nasty upper respratory/sinus infection. I noticed withing hours of getting it that my muscles and joints hurt so bad..even ones that had never really bothered me much before. I had the feeling of inflamation and swelling in all my extremeties..severe head/neck/jaw pains. I'm just now starting to be able to walk around without the muscle cramps but definately still feel horrible. (Not sinus related) I actually think overall I feel worse after getting those shots. I actually told my husband a few days ago that I will never ever take steroids again. Anyway that's just my 2 cents. Happy new years...~hippychick
*Fibromyalgia*G.A.D*Panic attacks/disorder*IBS*
"Sickness and death are unavoidable in life. To experience illness is not itself misfortune, but to be defeated by illness IS misfortune"~~~Daisaku Ikeda

Posted By : Alcie - 1/1/2011 3:13 PM
I've had fibro for years and years. I have some good luck with depo-medrol shots for bursitis and back pain, never any lasting pain. They just don't always work.

Prednisone 20 mg gives me the most horrible headache that lasts two to three days after only one pill. I can tolerate 10 mg, but still get a moderate headache.

I've had decadron shots in the past with no problem, but they don't do much for pain.

Do you have any problem with the following "inactive ingredients?"
Inactive ingredients per mL: 8 mg creatinine, 10 mg sodium citrate, sodium hydroxide to adjust pH, and Water for Injection q.s., with 1 mg sodium bisulfite, 1.5 mg methylparaben, and 0.2 mg propylparaben added as preservatives.
Alcie
 
 

Posted By : KellieJo - 1/1/2011 3:49 PM
I can't tell you but known I have taken it several times in the past for Asthma for my lungs.

It's hard to say because I also was in a rear in car accident five years ago and thought I was fine, 3-4 months after I got a stiff neck had to go to PT. Still have problems from time to time. Then a serious sinus infection a year later and had ear pain that comes on with fronts. In the last year I have fibro symptoms.
'Brokenness means we are ready for change. Lord, come take my pieces and make me what you want.' Mark Brown

Posted By : crazykitty - 1/1/2011 4:26 PM
It has been awhile since I've done a prednisone taper for arthritis
inflammation, but I never made the connection of steroids causing
more fibro pain.

I believe I once read on the lupus forum that some of the lupies who
also had fibro, that when on prednisone, it made their fibro worse.

I do know that prednisone never made my fibro feel better.

Interesting topic!

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
 
 

Posted By : Vannie - 1/1/2011 6:03 PM
I am taking prednisone right now and I have been hurting a lot, but I have trouble differentiating between the inflammatory arthritis I have and the fibro pain.

I have had steroid shots in many joints, and high doses of prednisone by mouth for asthma attacks, etc. The prednisone relieves my arthritis pain a lot. I can't really say that it exacerbates my fibro.

V
Fibromyalgia, Inflammatory Arthritis, Osteoarthritis, Asthma
Plaquenil, Lexapro, Cardizem, Lisinopril, Advair, Lipitor, Vit D, Joint Supplements, Soma, Tramadol
Be Kind To Others For Everyone Is Fighting Some Kind of Battle

Posted By : Mrs_Mike - 1/1/2011 6:30 PM
I've always fealt that my fibro started after I had a HORRIFFIC sinus infection that ultimately lead to surgery. I was on steroids several times prior to surgery as a treatment option and after surgery. I find this VERY interesting. I remember one particular time I was on a high dose because I was at work and had my heart racing all the sudden and someone saw me stop and grab my chest at work (family practice). One of the Dr's saw me right then and there and said it was from stepping down too quickly on the steroids. I was on 20mg tabs. I guess I should have been on 10mg tabs so I could have stepped down more slowly. Anyway, like I sad, very interesting.
Fibromyalgia, migraines, arthritis, PCOS, IBS, anxiety, chronic insomnia; Lyrica, ambien, yaz, cymbalta, lidocaine patches, midrin if needed, (fish oil, D3, Co-Q10, multi) PS: I think fibromyalgia is a jerk!

Love, hope, and hugs,
Mrs_Mike

Posted By : Frankey - 1/1/2011 8:03 PM
I definitely believe that steroids/prednisone can make you flare. So many people without fibro feel horrible when taking them and weaning off of them and have horrible withdrawal symptoms. I have had to take 1 or 2 days of prednisone in the past for severe strep throat and have not had any problems. However, I have been in a 4 months flare (that shows no signs up letting up) and I am convinced it is in part due to having to be on high doses of prednisone for over a month due to an anaphylactic reaction.

I will NEVER take prednisone again unless it is absolutely necessary to save my life. Obviously that was the case last time and I had no choice, but I had a horrible time while taking it and the withdrawal was horrendous. I found many websites of people having terrible withdrawal symptoms and long term weakness and problems even when off the prednisone. Within a few days of beginning the prednisone my Dr had to test me for the steroid related atrophy due to severe extreme muscle weakness. My Dr was not pleased with my exam and my lack of muscle strength. I was so shaky when walking and I was unable to stand for more than a minute or two. Thankfully the blood work did not show the enzyme for muscle wasting and the weakness it passed within a few days, but I was litterally housebound and on bed rest. I and my Dr both believe that it was so extreme due to having Fibro.
"Just when the caterpillar thought the world was over, it became a butterfly" - Proverb

Posted By : sotiredoffibro - 1/1/2011 11:03 PM
Ok I think I am going to give up on trying to figure out what is caused by my fibro or what is caused by the chemo. I thought my weakness that I have been feeling was due to the chemo but now it could be my fibro reacting to the steroids they give me before chemo. I thought my scalp hurting so bad was because of the chemo but now I have heard so many of you say that you have scalp pain. There are other things also but cant remember what they are due to fibro fog or maybe chemo fog. lol I think from now on I will just go with the flow and not try to figure it out. to confusing lol
Gentle Hugs
Shirley
DX: Fibro, Gerds, COPD, Osteoarthritis, Osteoporosis, High Blood Pressure, and Depression.
When I get where Im going dont cry for me down here. (Brad Paisley & Dolly Parton)

Posted By : Terrahawk - 1/2/2011 6:31 AM
Hmmm! Remember taking steroids around the time of getting Fibromyalgia????
DX: Fibromyalgia, Depression, Memory problems, Psoriasis, Hiatus Hernia, Oesophagitis, Anger problems, Osteoarthritis, IBS, Pituitary Glandular problems!

Note * Clueless doctors! You might want to point out to them that Fibromyalgia is in the Social Security computer system so they know what it is!

Posted By : damouthy1 - 1/2/2011 10:58 AM
I have only taken steroids once in my life (about 6 months ago) and I got very sick from them. I even felt like my whole body was crooked, I couldn't hold my head up, nauseated, dizzy you name it I had it. Needless to say I stopped taking them and within a day or two I started feeling better.
Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Percocet, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

Posted By : J.P. - 1/2/2011 12:49 PM
I was on a high dose of prednisone over 10 years ago, in one post I said 1997 but it had to have been late '98 early'99--worst thing I ever took swore I'd never take it again unless it was a life or death situation. But my fibro pain just began about 4 or 5 months ago (I think, my time line is a little off) so I'm not sure if there's a connection or not.

At some point on the prednisone I had severe leg pain one night,it was the shooting pain from my hip to my toes, so bad I was crying. The prednisone didn't work and after I weaned off the prednisone I believe I had a bad autoimmune flare. I was losing weight too fast, frail, and chronically fatigued but I didn't have a doctor at the time. The doctor who prescribed the prednisone was a 4 hour drive away and had just basically cut me loose with a sub-clinical lupus diagnosis but I have never been officially diagnosed with lupus. I was diagnosed with fibro in september or october 2010.

Posted By : kathydownunder - 1/3/2011 9:03 AM
I have read in books and on line that steriods will increase the pain of Fibro.
Just go on line and look at a few sites they explain it all.
That is just like morphine can make the pain a lot worse if your mixed up system that we all have with fibro.
I know all the years I was on it no matter how HIGH they put the dose it never stopped it.
Who knows what goes on with our mixed up bodies, I really hate not knowing how my body is going to react to new meds.

Kathy

Posted By : Sherrine - 1/3/2011 9:26 AM
I was put on 80 mg. a day of Prednisone for auto immune inner ear disease after having fibro.  My pain didn't get worse but my immune system shut down and I was catching everything and looked like the Pillsbury Dough Boy.  It took me four months to wean off of it.
 
Morphine works wonders for me!  I have been hospitalized many times with partial bowel obstructions and they give me morphine and the pain disappears!  I wish I could take that all of the time!  wink
 
This just shows you how different each of us are and how our bodies react to medications. 
 
Sherrine
Forum Moderator/Fibromyalgia
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : GSDgirl - 1/3/2011 9:50 AM
about 10 years ago I was in the hospital 5 times and I didn't realize until the 4th trip that morphine made the pain worse.  They acted like I was a drug addict and immune to morphine. 
 
Demerol worked wonders on the 5th trip AFTER they realized there was no drugs in the pain pump.  Complete hysterectomy with no pain meds for 8 hours smhair .  My mom and hubby were freaking, I was white as a ghost and clenching the bed rails, couldn't move.

Posted By : captainkate - 1/4/2017 9:15 AM
I've not been formally diagnosed with fibromyalgia , but am pretty sure I have it. I have asthma, and every time I take prednisone for it I get severe pain that lasts a couple of days. I've talked to a few people about it, and everyone says that it shouldn't make me hurt worse, but it definitely does. It's not joint pain, it's like the middle of my bones are filled with something toxic, and it's widespread. It's also worse where I regularly have pain in my muscles. It happens when I take 10mg, but not as bad as if I take 20mg. 20mg makes me incapacitated.

Posted By : dmb124 - 1/4/2017 12:15 PM
Steroids have been off the table for me for a while. I hurt for days after having a steroid shot or the entire time and several days after taking them orally. I was told by my previous rheumy that it did not have anything to do with any disease that 1% of people have this reaction to steroids. That being said, I wonder if that 1% is comprised of mostly fibro sufferers? Something to consider. I haven't discussed this with my current rheumy, who actually diagnosed me with fibro instead of throwing medication at me without telling why. It was almost like the previous dr. didn't want to say the word fibro. But that's the treatment he wanted to start me on. I refused to take medication if he wouldn't tell me why I needed to take it. Found a new rheumy and things have been improving ever since!
Michele

Fibro, RA, GERD, hiatal hernia, migraines, TMD, hypermobility joint disorder

Posted By : birthdaysuit - 1/15/2017 1:53 PM
IF steriods and/or prendisone is making fibro, CFS, MS or any other auto-immune issue significantly worse, it's likely due to replication of stealth infections bacteria infections or viruses. Prendisone/steriods suppress the immune response so this might be the reason for your pain.

In my understanding MANY CFS, Fibro cases are pathogenic based, meaning that Fibro or CFS isn't the root of the problem. I'm not denouncing anyone's pain or suffering but I believe a lot of these names are fluff based and cover a wide range of problems. I was diagnosed with Fibro, CFS, turned out I had 5 infections.

Posted By : Prettygirl49 - 8/29/2017 6:55 AM
I had a steroid injection in my SI joint on July 25 and have been in excruciating pain since then. The doctor said he thinks it flared up my fibromyalgia. I had three steroid injections yesterday and L3 L4 and L5 for L5 and have pain , joint swelling and a severe headache today. Could this be another fibromyalgia flareup due to the steroids?

DX: chronic degenerative disc disease, fibromyalgia, Osteoarthritis, hypothyroidism, unknown auto immune disease, PTSD and depression.

2 corinthians 12:9-10:

But he said to me," My grace is sufficient for you, for my power is made perfect in weakness". Therefore I will boast all the more gladly about my weaknesses so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, and insults, and hardships, in persecutions, and difficulties. For when I am weak then I am strong.

Posted By : Sherrine - 8/29/2017 9:42 AM
Hi, Prettygirl, and welcome! It could be the cause since this happened before to you. If it happens again, I personally would consider this a pattern. I'm sorry this is happening to you.

As I said in a previous post, I don't get pain from steroids. I just get sick.

Do let your doctor know this happens to you. Maybe there is something else he/she can try to help relieve your pain.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : DianeB - 8/29/2017 9:14 PM
Sorry you are having issues with this. Do continue to keep your medical team informed.

For years I would occassionaly feel like I was coming down with something, have a degree or so of fever, go to primary care dr, have a check up & blood tests. Nothing ever showed up. Does not mean nothing was happening - infection, etc- I felt something was not right. Just never found out what 'it' was.

Had a single steroid injection in neck/cervical area (for pain from injured discs). Years ago.. At least 8. Blood pressure was so high by end of procedure there was serious discussion about sending me to ER via ambulance. I could hear the doctor/nurses talking to my relative who was with me but i was afraid to nod/move/ talk as my head felt huge -swollen. Headache is an understatement !

Several side affects, lasting for several years, included sudden severe dizzy spells, loss of appetite, which have gradually decreased. The increased sensitivity of my eyes to light is apparently permanent.

Entire body felt numb, for about a day, then what I thought fibro flare took over.

Was advised to never have steroids again.

about 4 years ago, had a 'simple' procedure; while 'under'. that dr ignored my pain management doctor's request -& mine- for NO steroid. Woke up experiencing those same weird 'spacey' feelings, though bp was not high. Obtained written report next day &, yeap, dr had noted the steroid injection was given to 'lessen patient's pain'. Body was numb again, then fibro flare. Plus Same side effects, increased in intensities.

Next time I will write "NO STEROIDS" in permanent marker on my skin, where dr cannot miss/ignore.

Pain management dr does currently inject lidocaine, usually in painful, hard muscle knots, which helps, & knock on wood, no adverse reactions.
Herniated cervical discs & other disc /spine issues, Arthritis, spurs
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis

Posted By : Prettygirl49 - 8/30/2017 3:43 PM
Thank you for your reply! I have just felt really spaced out today. Had the pain and inflammation yesterday now today just spacey and feel like I'm coming down with a cold and I know it's all related to the steroid injections the other day. This is twice now that this is happened and I'm scheduled for three more steroid injections on September 11, I'm not sure what to do.

Posted By : Sherrine - 8/31/2017 6:37 AM
Prettygirl, you have said you are in more pain after the steroid injections so there isn't a point in getting them. They are supposed to help lessen the pain. It looks like you have reactions to steroids since this happens every time you take them. So, I personally would go to the first appointment and let your doctor know you do not want the injections anymore. There has to be other things to help with the pain, since the injections actually give you more pain plus a myriad of other symptoms. It's your body.

Check out this link below about cortisone shots symptoms.

www.webmd.com/arthritis/what-are-cortisone-shots#1-4

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : Hallahan - 9/7/2017 10:34 AM
Hi Sherrie:


I recently had a steroid injection in my shoulder and it helped my shoulder tremendously but had no effect on my fibromyalgia.

My fibromyalgia came on after a particularly stressful job where I had responsibility for accreditation of a certain department at a hospital. I was 64. I held my body tensely which eventually caused me pain. Soon I couldn't relax my body and the aching all over and exhaustion began. My personal theory is that stress changes the brain (well that's been proven). Lifelong stresses combine to re-wire the brain to this pain cycle in some unlucky people with a weakness for it.

How to undo all that? Doesn't seem to be possible. We can use drugs on the symptoms is all. Not sure about the steroid connection. Could be though.

Hope you are safe from the storm.

Barb smile

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