Fibro or PMR

glinda47, Bless you. I'm so sorry you are battling this. I can only tell you about my 29 year experience with Fibromyalgia & Chronic Fatigue. I am not familiar much with PMR.

Fibromyalgia is very painful. You can hurt all over during a flare and then just in certain places on other days. Your body can be sore to the touch and burn. Stiffness goes along with it as well. I move as much as possible because the less I move....the stiffer I get.

Chronic Fatigue tends to go along with FMS. It's not just fatigue....it's exhaustion. Mornings tend to be my hardest time of the day. I do nap if I need too....it helps. I take Natrol Melatonin 5 mg & Children's Zyrtec Liquid 2.5 ml at night and it helps greatly with my sleep. I have been a light sleeper all of my life. A lot of people with FMS tend to not sleep well.

My pain & fatigue tends to be worse in the humid & hot weather. Extreme weather change causes flares as well. Flares can last a day or several days to weeks.

I do not tolerate medication very well and cannot take NSAIDS. I have found that Flexeril 5 mg (Prescription)
helps me the most PRN. I also take Tylenol for pain. Epsom salt bath soaks, heat packs, Voltaren Gel and I get a monthly "gentle" massage. I may feel good one hour and crash the next with pain and fatigue.

The following go along with Fibromyalgia for me: Headaches/Migraines, Chemical Sensitivity, Food Sensitivity, Medication Sensitivity, Environmental Allergies, Thyroid Disease, Arthritis, Raynaud's Syndrome, IBS, just to name a few.

It's a very misunderstood malady because you look fine.

Pacing myself has been very hard for me as I am a doer. I have had to accept my limitations. My family, church & friends have been very supportive. My faith in the Lord keeps me going.

I am praying for you. I understand and empathize with a lot of your symptoms. Please keep me posted at what you find out. I care. Blessings, Prayers & Hugs...

I also have fibromyalgia with insomnia every night. How did you hear about trying Zyrtec? I assume you take the children's product because it's a lower dose? How much do you take and do you take it every night? I also use melatonin (every night) and Flexeril (as needed). Thank you.

I have had Fibromyalgia for many, many years and learned to live with the pain. Then I got Covid and my symptoms skyrocketed. The most help I have gotten has been with a functional medicine doctor. I have been on low-dose naltrexone 3 times but once he upped the dose I saw a major increase in my energy levels and muscle and joint aches are almost gone. I also take other supplements but am now weaning myself off. The Mayo Clinic also helped with partnering me with Linn Health and a coach to work on desensitizing my central nervous system. The videos and techniques take time but they do work. I went from not being able to walk outside or exercise at all to being able to do mild Pilates and Yoga, use meditation and deep breathing techniques to calm my nervous system and also stared Tai Chi. But it has been a battle for the past 3 years and multiple symptoms. I still have sleep issues, bowel issues, digestive issues but they are improved. See a functional medicine doctor as they try to find the root cause not just treat symptoms. Unfortunately, you have to pay out of pocket as insurance doesn't cover them.

Forgot to mention that I also use CBD daily to keep inflammation down. I would rather take that than Tylenol or Ibuprofen. It take time though and you won't notice an immediate relief. I have used CBD tincture for years and after months my inflammation markers all went down to normal. I use 1000 mg the strongest I could find from Ambary Gardens as they are organic and recommended by my nutritionist. I didn't notice a difference until I ran out and then my pain shot up and I went back on it.

Can't believe all that you've been and still are dealing with. Thankfully you seem organized and not one to become overwhelmed (not too often anyway). Glad that you have found a sweet spot in all of this where you feel better and know what you need to stay there.

I took a look at Ambary Gardens and certainly looks like a decent business. Of course, there are always disgruntled employees and others who make negative claims. I'm exhausted just trying to find a place that I feel I can trust. They also sell such large quantities. I wanted to start with 50mg gummies and they start at 300 or so. I guess I'll give them a call.

Thank you for sharing and all the best to you!!!!!

Thank you for sharing your story and your status today.

I'm sorry you have so much to deal with and it's remarkable how well you seem to be handling it. In reading of you description, I don't think I have fibro. Prob PMR even though the docs are uncertain I can't take steroids. They say that if the steroids help, that means you have PMR. I say "Rubbish!" Steroids help inflammation. Period. Not sure why they don't prescribe it for fibro actually.

Thanks for all the kind words and once again, for sharing. I wish for you peace, contentment and joy. So glad you've found coping mechanisms that work for you and keep you together.
Best to you. I know how hard you've worked instead of sitting there wringing your hands!

ripley, I take 2.5 ml of the Children's Zyrtec. I am so sensitive to medication and it only takes a little amount for me with anything.

I was put on an antihistamine for Long COVID. This low of a dose does not dry me out much. It helps me to sleep better with the Fibromyalgia too. I take it every night with 5 mg of Melatonin.

I’m coming to you as someone who has both PMR and Fibro for 15 years! That was a mess to get figured out and still working on treatments. So realize you can have both and it’s more common than I realized.

One way to tell if you have PMR is… are you stiff in the morning for a while? I mean moving is stuff and slow until you get loosened back up. The bilateral pain in your thighs and upper arms is pretty convincing for PMR. Add in stiffness and you need new Drs if the one you have isn’t diagnosing it for you. Are they a rheumatologist?

Fibro is different. For me, pain is where my body touches something. Lay on my side and my side will hurt for hours or longer. Put my elbow on something for a few minutes and my elbow hurts for hours. I’ve got memory foam covered in a silky microfiber all over furniture in my house as even textured material will cause pain. Anything not very soft does too.

The issue with having both is that their treatments are very different and you won’t know what’s working because you’ll still be in pain unless you treat both!

I have been on prednisone for the PMR for 5 years, but my pain levels went crazy whenever I tried to wean down. My inflammation and sed rate was never normal, but reducing really shot them up. My dr got me on Kevzara injections recently and suddenly my blood tests were normal again and my arm and thigh pain reduced tremendously and morning stiffness was gone. I’ve been reducing my prednisone and hope to be off of it in about 12 weeks.

But suddenly my fibro pain came to the forefront so I’m talking to my rheumatologist about prescribing cymbalta and hoping it works. If you have both, you have to treat both or you’ll still be in pain.

I’m not sure why you can’t take prednisone, which is a first line treatment for PMR, but if it’s a medical reason, then you could possibly get approved for Kevzara as an alternative,

I’ve read that you can have PMR with normal CRP and sed rate in 13% of patients. Maybe stick that number in their face.

I hope you do get help for whatever ails you. I’ve been 15 years of a pain filled life and only recently seeing hope for a much less painful one recently. I hope your journey is much faster than mine was.

Oh and get tested for Lyme disease. I found I had cdc verified Lyme, which is likely what messed up my immune system and started me on this autoimmune disease path. You will never get better if those buggers are floating around and creating havoc!

I also have CFS chronic fatigue syndrome. High dose B1 had done wonders for that. You can Google it. I take 1500 mg a day and it changed my life in that department.

Good luck!

If your pain levels decrease on steroids, then yes, it means you have PMR. Steroids don’t work on Fibromyalgia as it isn’t an inflammation type of disease, whereas PMR is, even if your readings are normal. It was a year after my PMR pain started before my CRP and Sed Rate went up. One if the diagnostic steps for PMR is if your pain levels decrease with prednisone. You’ll know within 1-2 weeks. Kevzara can help, but injections are harder and cost is crazy, but you have to have a medically acceptable reason for not trying prednisone first. If you just refuse to take it, then it’s your choice to live with the pain. I personally will do whatever I have to go escape that pain, it’s been a crappy life living in that pain for 15 years. I took 5 years of prednisone and I’m now on Kevzara and my pain levels are getting better every day. I have hope again. But it’s your life and your choices.

For CFS I use high dose B1 and it’s changed my life. Google it.