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Has anyone tried steroids?
19 Replies
kentucky girl - June 2

I recently had inner ear problems and was prescribed prednisone. I was also given a shot of medrol. This cured my inner ear problems, but also gave me relief from the pain of FMS while I was taking it.

Anyone else had experience with steroids?

 

Lee2010 - June 2

I had a similar result while taking prednisone. It was prescribed to me in a fairly high dose to deal with a skin allergy. It cured the allergy as well as taking almost every bit of my pain away. It was the first time that I was pain-free in a couple of years. However, the downside to this wonderful realization was the significant amount of side effects that I had to deal with. I can honestly say that the side effects were bad enough that I would not choose this to be part of my pain management program. It is also not recommended that anyone be on prednisone for an extended period of time. So, back to square one, but is was nice while it lasted.

 

Noca - June 3

corticosteroids are very nasty drugs than cause a wide array of side effects including a lowered immune system. Definitely not recommended long term.

 

Fantod - June 3

Steroids are not recommended for treating FMS. They have a very negative effect on the immune system. As someone with FMS, you should avoid them like the plague unless it is absolutely necessary. Medrol and prednisone are the same thing. Medrol is the generic name for prednisone. You have just received a double dose of the same drug. Whenever prednisone is prescribed (especially for an FMS patient,) it should be the lowest effective dose for the shortest amount of time possible. Take care.

 

tnichel - June 4

KENTUCKY GIRL!!!!!!!

where have you been my whole fibro life?! lol. I'm in louisville. I haven't read your post yet b/c I'm so happey to find a fellow sufferer in the the bluegrass state.

Ok, I'm back. Yes!!!!!! I love, love, love the steroids. They make me feel like superwoman but they are extremely hard on your body, kills your own immune system, and can make you gain weight. In fact, I just started back on prednisone for my lupus and yet undiagnosed immune condition that wreaks havoc on my body and only responds to steroids. Typically I stear clear of them until I absolutely have to take them.

You may have had some swollen passages thus why your doc put you on them. it's typically prescribed for severe sinus infections as well to bring down the inflammation. Tinnitis is common with fibro too. Do you have any other conditions? prednisone is not commonoly prescribed for fms.

7 days on steroids isn't that bad. My last stint was two months. I'll be on this round for a month. I won't even be able to look at a cinnamon roll or ice cream cone for fear of gaining 20lbs on the spot. lol.

Oh,I get dizzy spells too but mostly when I'm in flare or if I've overdone it for a day. I do have spells though there will it will last for weeks. Totally unpredictable but what's new.

 

Stacey373 - June 10

Hi everyone! I'm wondering if the steroid shots you get, which after researching I'm assuming they are the corticosteroids, are really bad for you?

For the last couple of years my doctor has been trying to talk me into getting these shots for my neck, shoulder, and headache problems at the pain clinic. I even went in and talked to the pain clinic doctor and they wanted to give me "trigger point" shots and some sort of an "epidural" type shot. I guess you could say I've fought them every step of the way on this!

First of all, years ago I had these shots in my neck and shoulder and was given Prednisone and it temporarily relieved my headaches...the problem was that as soon as I was "cured", I was patted on the back and sent on my merry way. Which meant as soon as the headaches came back, I had to start all over trying to get a doctor to listen to me.

My other problem with these shots is how safe are they? I've heard SO many bad things about this stuff and if you're getting these shots every 3 months, Is it really worth the risk?

I have to admit that I'm seriously thinking about getting them (someday when I have insurance again...husband is in the union, been laid-off for over a year now, and we lost our insurance in January)only because I will literally do anything to get rid of these headaches & migraines...even if it is only temporarily. but I am afraid of what sort of damage I will be doing to my body along with all the meds I'm taking too.

Any advice?
Thanks, Stacey :o)

 

tnichel - June 10

steroids are tough on the body. ask your doctor about lidocaine shots instead. I'm questioning the place that treated you b/c there's no cure for that type of pain. I get the lidocaine shots in my neck, back and shoulders once a month...but I also take muscle relaxers to keep them as loose as possible and sit in a massage chair almost every night. That has helped a lot with the headaches. I take topiramate when the headaches are really bad. Ask your doc about that too. You can buy a massage pillow to use on the neck and apply moist heat (bed buddy at any pharmacy). That should bring down some of the swelling and tightness from the trigger points. I hope you can get medical treatment for that soon.

 

Stacey373 - June 10

Hi tnichel! Thanks for replying. I will definately ask my doctor about the lidocaine shots. the only option I was ever given was cortisone/steroid shots and I explained before why I don't want those. I also take muscle relaxers and my doctor told me to take more through the day...the only problem with that is they make me very sleepy and I can't take care of my kids if I'm that drowsy all day so I only take them at night when I go to bed. My husband also rubs my neck, shoulders, jaw, etc if I ask him to and that seems to temporarily relieve some of the pain. I just feel bad to ask him to do that on a constant basis, so it's usually only when I'm doing really bad that I ask him.

I also have TMJ and I'm wondering if you can get lidocaine shots for that too? I've tried the mouth splint that a dentist gave me, but instead of it helping it actually made everything worse. I think I spent all night trying to get it out of my mouth.

oh! I did try this lidocaine patch the other day on my shoulder. It felt like I had a pinched nerve or something and I had pain shooting down my arm and into my head. It didn't help at all...but I'm assuming it wouldn't work as well as a shot since it's only on the surface and doesn't go deep down.

Stacey :o)

 

tnichel - June 11

You probably had pain from the bite guard b/c your jaw was realigned with it in. You may want to ask your dentist if it's normal. I have never gotten shots in the jaw for tmj. The shots on both sides of my neck (back,halfway between base of neck and shoulders) usually alleviate most of the jaw pain. I have heard of some people getting them there though. The doc who pulled my wisdom tooth said to never, ever let anyone do any kind of surgery on jaw for tmj. he said it would only cause more problems. Someone in another board mentioned have a cyst in that location.Check the main board for a recent tmj/jaw pain post. I put a couple of exercises in there. I'll try to find it and copy it over. but you know fibros...I have a hard enough time remembering to check my posts! lol.

I keep throwing this out there, but only b/c I really think it was one of the best decisions I made regarding my health care. I see a pain mgmt. doc who prescribes all my pain meds. You may want to consider this b/c they are more update on the latest pain meds. He tried me on three different muscle relaxers before we found the right combination. And some of that had to do with costs. One urgent care doc looked at me funny when I asked about a tramadol refill and told me it was a level 4 narcotic. the pharmacist looks at me funny when he sees the meds I'm on but I trust the pain doc who told me tramadol was not a level 4 and nor is it considered an narcotic. My point being, a pain doc would be more knowledgeable of the latest meds (including muscle relaxers, anxiety treatment) and you may benefit from that. But if you decide to see one go with a doc as opposed to pain care center...unless you want to use everything they have to offer like physical therapy, massages, etc. You may also benefit from a pillow massager or massage chair to break up the knots in your back, neck and shoulders. Hope this helps.

 

tnichel - June 11

Found it!
******************
Try these exercises.

Open your mouth slowly, drop your draw as far as it will go. Stay in the position (imagine o shape) for 10 seconds. Then slowly close your mouth. Repeat but this time move your lower jaw to the right & down, then for 10 seconds. Then do the left side. You should feel a good stretch in your jaw.

Next one:
Open your jaw as far as it will go. make your hand into a fist then put your first 3 knuckles in your mouth. Gently bite down and release. do for 10 seconds.

These exercises will help stretch the jaw. The left side is always the worst for me too. If it's in that much pain that means the muscles in your neck are way to tight and you may not be able to release them yourself (thus the tension headaches). But back to what I was saying. Open your mouth as far as it will go. Right in front of your ear you will feel the jaw bone. It's probably tender and protrudes more than the other side. Try massaging it with your mouth open.

I also massage right under my jaw (where it meets your neck...dang i wish i had an etch-n-sketch. lol) down to the front of my chest and shoulders. I wouldn't recommend this if you're not familiar with where your lymph nodes are. But if I can get the muscles in the front and side of my neck to release if feels likes heaven. You can also joint pain cream to massage into your jaw or a warm wash cloth.

My number one suggestion would be a massage and if all else fails, see a pain doc and talk to them about doing injections to relax your muscles. about half-way down your neck is trigger point...it causes the majority of jaw pain but if you can get it to release by yourself I think you'll have tremendous relief. If you have a massage chair or pillow you can try that. Apply heat to your neck first though to loosen your muscles. A massage after a warm epson salt bath can help to.

The stretches I suggested were given to me by a dentist so I know they are safe. You can also search the web for jaw exercises. Different ones work for different people. I have more so just let me know if you want them or have any questions. I know this pain well and have come up with all kinds of ways to get relief. Good luck!

 

Noca - June 11

Stacey373 try asking your doctor for Topamax. It is generic and it helps PREVENT migraines, not treat them. Thats it's label use in the US I think.

 

tnichel - June 12

Thanks Noca. that's the generic of what I mentioned. I always get them mixed up. It's used to treat seizures and help with migraines. It's prescribe to be used at bed time. If the headache is really bad a persists I'll take them every night for a week then ween myself off so I'm not taking too many pills at any given time.

Noca what kind of pain drugs are you using now? I think I've built up a tolerance to ultram/tramadol.

 

Fantod - June 12

Stacey - Anyone who has FMS should avoid steroid injections like the plague unless it is absolutely neccessary. FMS is an autoimmune disorder. Steroids compromise the immune system which is something that FMS patients don't need more of unless there is no other alternative.

Lidocaine is certainly a viable alternative for trigger point injections. Trigger points are muscles that are knotted that will not release on their own. I have had trigger point injections in my lower back to break the pain cycle. I have degenerative disc disease and when it flares things get pretty bad. Another alternative to lidocaine is Sarapin which is made from the pitcher plant. It has no known side effects and does not cause tissue damage like cortisone can with repeated injections. It is an extremely effective pain killer; my rheumotologist uses it.
That was what was injected into my lower back and it worked extremely well.

Another option for both your neck, shoulder and jaw is a TENS unit. This is a medical device that uses stick on electrodes to send a mild electrical impluse into the affected muscle. The pulse causes the muscle to jump and then relax. If you google "TENS unit" you can find out more about it.

I also think that you should go back to wearing your bite splint. It takes time to get used to wearing one. I've worn one since the mid 80s. Relaxing your jaw will help with your headaches, neck and shoulder pain as well as your face. If you have a lot a trouble with it at night, try wearing it off and on during the day while doing things around the house and watching TV. I wear mine during the day after a trip to the dentist and on days when my stress level is high. A lidociane shot in the jaw would be excrutiating to say the least.

Have you ever tried something as simple as a sports rub cream on your jaw where it meets the ear? I use Myoflex and it really helps. My other trick is to take a hand towel and soak the middle with warm water. Leave the ends dry so you can wring it out. Pop it into the microwave and warm it up. Moist heat works best on TMJ issues.

I hate Lidociane patches. They are cold, gooey, never stay where you put them and don't work very well. Another pain patch is the Flector Pain patch. It is non narcotic and only works where it is applied. It is not going to make you feel loopy. Unlike Lidocaine patches, it is very effective but they are expensive. I know you don't have insurance right now. Ask your doctor for any samples that they may have on hand for anything that you need. And, don't forget that the pharmaceutical companies all offer assistance to consumers that can not afford a prescription drug. You can find out about their programs by going to their websites.

I hope that my comments are useful to you in some way. Take care and enjoy the weekend.

 

Stacey373 - June 12

Hi everyone! Thank You so much for all your suggestions. Without knowing it...I already do those jaw stretches during the day just to stretch my jaw out. I didn't realize they were actual stretches a dentist would give you! I'm constantly rubbing my jaw, side of my face, and neck to try to relieve the tension that is CONSTANTLY there. I also have some very bad habits that I didn't realize were making my TMJ worse. I think I must be a very nervous person because I bite my nails, the insides of my cheeks, and I'm always clinching down. I guess I knew this was giving me some of my headaches, I just never knew how SEVERE TMJ could actually be....does that make sense?

I did start to "re-train" myself about a year ago with consciously not clinching my jaw. but it's just been lately that I'm really trying not to do the other things...it's hard! That's a hard habit to break! LOL

I've tried topamax, imitrex, and all sorts of migrain medications...nothing seems to work. I've also got the floctor patches...my doctor game me some for free. But they are an NSAID and she told me to not use it for long and only if I absolutely wanted to deal with the nose bleeds that go along with me using any kind of NSAID. (I think I mentioned I also have a blood disorder)So I haven't tried those yet.

anyways...once I get insurance I'm going to ask to get the lidocaine shots. If I can't get them in my jaw...then I will do the other places and hope for the best. I'm just happy I didn't get the other shots...I KNEW it wasn't the right thing to do!

I'm also going to look for a pain specialist that isn't in the actual Pain Clinic. I went to the pain Clinic in this area and they were the ones who wanted to give me the cortisone/steroid shots again and they also treated me like a drug addict (even though I wasn't wanting pain meds because my regular doctor monitors all that just fine!) But, this was BEFORE I was actually diagnosed with FMS, so I don't know, maybe they would treat me differently now.

okay....I think I replied to everything you all said...have a Wonderful Weekend everyone! Stacey :o)

 

Fantod - June 12

Stacey - TMJ can be quite severe. It causes a lot of problems with the head, neck and arms. And, it can also affect your balance. In my own case, I am clencher. I have had braces twice. The first set when I was a kid which was eons ago. I had an overbite that made Bugs Bunny look like amateur. I could not wear my retainer because I was allergic to the material. My teeth moved again so I got braces for a second time in my 40's. At that point, it felt like someone was trying to ram half inch dowels into my ears from the TMJ.

My teeth were pretty well worn out from grinding and clenching which is why it is so important to wear the bite splint. I have all but 7 teeth crowned at this point. It has taken years and eleventy billion dollars to get my bite issues under control between the extensive dental work and multiple splints.

You should do everything that you possibly can to tolerate that splint. The jaw muscles get into the habit of clenching without you even being aware of it. I have a permanent slight tremor in my lower jaw which is now never completely at rest without the splint. Trying to retrain yourself is fine but there is muscle motion going on and you are not even aware of it.

Good luck with any the suggestions that have been made. Take care and keep in touch.

 

Noca - June 12

tnichel - Sorry didn't read that post of yours. I know Topiramate is the generic of Topamax just cant read every post due to my ADD.

As for my meds. I take Nortriptyline(50mg), Zyprexa (10mg), Xanax (2mg), Dilaudid (16mg), Fentanyl (25mcg/h), Celebrex (200mg), and Gabapentin (300mg)

 

tnichel - June 12

Stacey, OMG! I thought I was the only person to bit the inside of their cheeks raw. I guess it's a nervious habit. Idk, my mom does it as well. Do you bite one side more than the other. It didn't start for me until I reached my 20's. I too have to make a mental effort not to do that or clench my jaw.

Noca,
no worries. I just wanted to thank you for helping me remember. I do good to remember which posts I respond to. lol. Ok, most of the meds you're on I'm not familiar with. Which is specifically for pain?

Fantod,

did you ever try an over-the-counter bite guard...the ones you can mold yourself? I keep going back and forth on whether to get one made by the dentist. Also, the tens unit...the chiro used it on me a few years back but not for tmj and I didn't notice any change. How long did it take for you to benefit from using it? The chiro was willing work with the ins. company to get me one but I turned it down. At that time though I was newly diagnosed and everything was out of whack.

 

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