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Posted 4/28/2019 2:08 PM (GMT 0)
Hi,
I'm new here, from the UC forum, bc I was recently diagnosed with myalgia - unspecified. I was wondering what the difference between Fibromyalgia and Polymyalgia is? And if I were to ask my rheumatologist for steroids "to see" if it helps with my muscle pains, and if it does, does that mean it's not FM? Right now I find relief from hot showers (wonderful!), and heating gel packs (ahhh), but these are temporary. I wake up stiff, often with headaches from my sore neck muscles and shoulders. My hips and wrists are constantly sore as well. I take Tylonel every day (can't do ibruprophren). I have tried physical therapy recently and found it made me worse (two times I woke with a headache afterwards).
I see my rheumatologist later this week, but I just wanted to stop by and ask this question, if I should go the route of prednisone, which I'm not new to bc of my UC, and I know it does make me feel great all around as far as aches and pains.
Thanks!
Posted 4/28/2019 3:20 PM (GMT 0)
Hi, Decaf, and welcome! We can’t tell you which illness you have but I’m sure your rheumatologist can. Two tests that probably will be run are the ESR and the CRP. When my back was severely affecting me, I headed to a board certified rheumy and was diagnosed with ankylosing spondylitis. These two tests were used to help with diagnosis. They can indicate inflammation. Polymyalgia is an inflammatory illness and fibromyalgia is not. Here is a link about the differences, taken off the Arthritis Association site. It’s written by Dr. Clauw who is also a research for fibromyalgia.

https://www.arthritis.org/living-with-arthritis/tools-resources/expert-q-a/fibromyalgia-questions/polymyalgia-fibromyalgia.php

Prednisone isn’t great for taking long term. I had to take it occasionally for Crohn’s disease and also was given large doses for one month to try to stop the progression of my hearing loss. It didn’t help but it did pretty much shut down my immune system and I was catching everything that was out there. I was soooo sick. I ended up looking like the Pillsbury Doughboy and I came down with full-blown diabetes also...not to mention weight gain and high blood pressure. So I don’t take that anymore.

Here is another link for you from th Mayo Clinic explaining the pros and cons of Prednisone.

https://www.mayoclinic.org/steroids/art-20045692

Ankylosing spondylitis is like rheumatoid arthritis of the spine. I was in tremendous pain and the rheumy wanted me to take biologic medication. I wouldn’t do that because of my family medical history. I’m not supposed to take ibuprofen either, according to my gastroenterologist, because I’ve developed stomach ulcers twice from it after many years of taking it. But my Internist told me about a medication that helps protect the stomach from ulcers so I tried it and it’s been working for six years so far. It’s called misoprostol.

Another medication that has worked wonders for my pain is a muscle relaxer caller Robaxin (methocarbamol). I take a fraction of what was prescribed and so I don’t get the side affects that are typical of muscle relaxers. My mind is clear, I can drive, I’m not sleepy, etc. So this might be something to ask your rheumy about. You could see if this works and perhaps you would not need the prednisone. If you have Polymyalgia, it usually clears up in a couple of years.

I hope this has helped you some. Please let us know what you find out because we do care about you.

Sherrine
Posted 4/28/2019 4:23 PM (GMT 0)
Thank you Sherrine for the quick response and information. I know my CRP is within normal range, but I'm not sure about ESR. I will definitely ask about that. Also, my report said ANA positive, but that could be bc of my colitis.
A lot of that article points to Polymyalgia for me!
I'm going to mention the medication misoprostol and see if that's something I can take. Do u take it daily? I have RX for tizanidine, but haven't taken it yet bc of the side effects, but I can take half and see. Thanks for that idea!
The biologics are the next step for me (colitis wise) when I'm ready, most likely Entyvio, but I'm holding off right now.
Posted 4/28/2019 9:26 PM (GMT 0)
The ASA test can be elevated if you have a minor infection. It’s just one of many tests to help put together a good diagnosis. Yes, you fit symptoms of Polymyalgia...but also of fibro! Our shoulders, neck, and hips can hurt too. This is why your doctor diagnosed you with myalgia. These illnesses are tricky to figure out.

At one point, when my pain was extreme, I was taking three ibuprofen and one misoprostol four times a day...every six hours. That’s the most ibuprofen you can take in one day and be “safe”. I now take three ibuprofen and one misoprostol two times a day...before breakfast and before dinner. It’s very important to take ibuprofen with food to help protect your stomach. I’ve been taking ibuprofen for 32 years. It was still a prescription drug when I was first put on it.

I also take the muscle relaxer at the same time as the ibuprofen and misoprostol. I do this because I need to keep tight control on the ankylosing spondylitis. If not, my vertebrae could fuse and I wouldn’t be able to bend or twist. It could fuse with me being bent over. So I don’t fool around with that disease. 😁. The ibuprofen helps with the inflammation caused by AS.

I take only one tablet of the muscle relaxer when I take it. The prescription says to take two tablets. The beauty of this muscle relaxer is that the tablets are score so, if I wanted, I could cut it in half and take even less but I am getting good results with taking the one tablet at a time. Hey, don’t fix it if it isn’t broken! 😂

For 11 years I was misdiagnosed with UC. But I did keep the diarrhea under control by taking azulfadine...a sulfa drug and also another prescription called Librax. This relaxed the colon. I also was careful as to what I would eat to help prevent a flare. So those are other options to try. The biologic medications make me nervous. My prescription coverage doesn’t cover them unless I get the infusions. When I was at my drug store picking up my meds, I asked how much Humira was. It was a little over $2,000 for one prescription! Yep, you are reading that correctly. I don’t know how anyone can take that. I don’t know how many doses that was but it sure didn’t matter to me because I could never afford it.

Again, I hope some of these suggestions help you and do let us know what your rheumy has to say. I’m curious. 😁

Sherrine
Posted 4/28/2019 11:55 PM (GMT 0)
Zoinks (!) that's a lot of ibruprophren. I can't even take children's formula without fearing a flare up/bleeding, but I do when my headache turns into a migraine and I'm desperate for relief. And yep, I do take it with food but still feel queasy for a few days afterward.
When I was on Imuran, my pain got so bad I couldn't even walk or sleep. I started to think the Imuran brought on FM or PMR, so I stopped it (gastro approved). However I still have this pain altho not as bad.
I see my rheumy on Thursday to go fully over the lab report and xrays that were taken. They provided me with a CD of the xrays, which is cool to look at, but I have no idea what I'm seeing, lol.
Anyway, thank you for those tips and for sharing your story with me. I will gladly report the outcome after my Dr visit.
Posted 4/29/2019 12:28 AM (GMT 0)
Yes, I got so I almost couldn’t walk, too. I had pain shooting down the inside of my legs and I needed two canes to walk baby steps. But ibuprofen is my wonder drug. I’m thankful I can take it. Two pills don’t touch the pain but three work for me.

Sherrine
Posted 5/10/2019 2:12 PM (GMT 0)
Hi decaf4me, I wanted to ask if you have an appt scheduled to see a pain mgt dr yet? Did your rheumy offer to change your muscle relaxer or not. I have a couple ideas about the muscle relaxer.

Take care.
Posted 5/10/2019 5:43 PM (GMT 0)
Hi Straydog,
Yes I scheduled an appointment, but first I need an MRI of my cervical spine bc that's where it's the worst. I have bone spurs in the neck.
No, my rheumy didn't change the muscle relaxant to any other, but she did prescribe gabapentin but I haven't taken it yet.
Posted 6/10/2019 2:39 PM (GMT 0)
Just checking on you. Did you ever get your MRI done, if so what showed up on it? If you have spur this can be a big factor with all of the pain you are having.

Keep us posted.
Posted 6/11/2019 12:22 AM (GMT 0)
Hi Susie,
Yes, I had the MRI done and it showed normal wear and tear of my cervical spine (osteoarthritis) with some narrowing (stenosis) and small bone spurs noted. The pain specialist said it's Cervicalgia that is causing the stiffness, muscle pains, and headaches and said I could get injections at any point. But right now I'm okay doing heat therapy, taking tizanidine only as needed, and Tylonel throughout the day.
I absolutely love heat therapy, and I got the idea from this forum when I was searching awhile back. It helps my neck, which in turn helps my head pain and my sore shoulders.
He also suggested TENS unit and so I'm thinking about trying that as well.
Posted 6/11/2019 1:51 PM (GMT 0)
Decaf4me, glad to read that your MRI confirmed the cervical issues! Yes, moist heat can do wonders. Back in the 90's I spent many times in the evening cooking after work with a warm moist hand towel wrapped around my neck & shoulders. I would put the hand towel in the microwave & nuke it, lol. That way I didn't have to worry about a cord, lol.

Tens Units are helpful for a lot people. Here is my suggestion, since your dr suggested one, he can recommended it, he can get your insurance to approve renting one for x amount of time. If it helps, then your insurance should pay for it & future supplies needed. This is what my dr did for me. There are plenty of them available OTC now but it's finding which one will work the best & knowing where to place the pads correctly. Give it some thought.
Posted 6/11/2019 2:36 PM (GMT 0)
Bed Buddy products are wonderful for moist heat also. Yes, you heat them up in the microwave. They have different shapes and even slippers! One goes around your neck and they have another style that is a cape that would help your neck and shoulders. You can find these at Bed, Bath and Beyond and other places. Like Susie said...no cords!

Sherrine
Posted 6/11/2019 3:54 PM (GMT 0)
Susie, I didn't know you can rent one! That's what I'm going to do for sure. They are kinda expensive so this will be good to test it out.
The heating pads I too have around my neck as I go about certain chores, lol, but mostly I like to finish up my work, then rest on the couch for 20 minutes with it on.

Sherrine, I've been using corn bags that I found thru Amazon. They are not cheap, but they do hold heat for a long time. I actually split one of the bigger sizes and put some of the corn in a tube sock, so I basically got two for the price of one! Lol. Plus, this way they're not so heavy. I still use an electric heating pad on occasion.
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