Pain upper thighs, lower back

[Gaspereaux]

i am at wit’s end with this pain, that appears much worse at night~. Is this a symptom? I am in agony

[Samanthaann]

I have had lower back pain and leg pain too. Sometimes in one thigh, shin and ankle. Really wierd.

[Candy12]

If this pain is new to you, or not confirmed as PBC I would urge you to see a doctor not everything is PBC related.

I had bone pain but that was the legs and it went away once I had repleted my vitamin D levels to normal. I can’t say it was agony just a nagging endless pain.

Painful thighs and lower back, I think warrants further investigation. It’s not nice to be in pain that will impact your sleep which is not helpful in PBC, please get it looked at don’t suffer in agony.

[Gaspereaux in reply to Candy12]

Thanks, Candy. So you mean your vitamin d levels were too high? My B12 were way too high, but i stopped taking the supplement.

[Candy12 in reply to Gaspereaux]

No my vitamin was way too low, that was what caused my bone pain. Rhumatology thought it was fibromyalgia at first, but decided to test the vitamin D, levels because I had PBC and a deficiency can cause bone pain. They were right to do so because the pain went away after I corrected the deficiency. It’s always good to keep an eye on your levels I have mine checked at least once a year.

[DonnaBoll Administrator in reply to Candy12]

Hi! great advice about getting vitamin levels every 1-2 years. It can be such a simple 'fix' if a level is not where it should be.

[Gaspereaux in reply to DonnaBoll]

So, Donna, they are not part of routine blood and liver tests?

[DonnaBoll Administrator in reply to Gaspereaux]

No, vitamin levels are not part of any routine testing. Usually routine blood work for PBC is a liver panel, Comprehensive Metabolic Profile (CMP), and hopefully a Complete Blood Count (CBC). I would insist on having your Vitamin levels checked - all the B vitamins, C, and D. Thyroid levels should be checked initially...then perhaps yearly if your levels need to be treated with medication. Those tests are often overlooked when we are so vigilant about our liver tests. Being proactive is important for us to take care of ourselves all too often. Let me know if you get them done. It will give you some peace of mind at the very least.

[DonnaBoll Administrator in reply to Candy12]

I couldn't agree more with you. Often when a new pain or symptom presents itself we, all too often, think it's PBC. Having something 'new' checked out by the appropriate physician is the best thing to do. Any of us would hate to have something that needs to be treated not be.

[Gaspereaux]

yes, you are so right!

[DonnaBoll Administrator]

Hi! I am so sorry this is happening to you. All of this sound advice given is exactly what I would have told you as well. Always best to check it out with the appropriate physician - even our primary - just to be sure. Many of us, myself included, think a new pain or symptom, is from PBC when it isn't at all. Right now I am dealing with lower back pain. For me, doing the right exercises and just moving has helped. Let us know what you find out. Does any kind of topical cream help at all? Here in the US we have Voltaren (safe to use the cream), or using heat? Hope you can get in to see a doctor soon. Not sleeping at night makes the whole day miserable.

[Gaspereaux in reply to DonnaBoll]

Thank’s Donna, my chiropractor believes it is a “Space Occupying Lesion”, a rather euphemistic term (LOL). So I am back to see my GP on the 10th of June and i have a note from her saying i should have an MRI to rule everything out. US and CT and X-rays were all good, really, nothing more than one would expect at 64! And I have an appointment on the 11th with my hepatologist. I really don’t feel it has anything to do with PBC, even though i know it can cause muscle/joint/bone pain…will keep you posted! I do have Voltaren (in Canada) and use it along with my heating pad. It all helps. And i try to do some Yoga each day! I am also having a consult with the surgeon for a cochlear implant, so a lot happening here in NB!

[DonnaBoll Administrator in reply to Gaspereaux]

I'm so glad to read that you are being so vigilant about taking care of 'all of you'. We often have to be our own advocates, don't we? Speaking for myself, I know I need to go to the ortho doc about this back issue.. second time it's occurred in a couple month. Getting that MRI, I'm sure, will be the next step. Nurses are so bad about taking care of themselves!!! You might inspire me to make my own phone call.

[Gaspereaux in reply to DonnaBoll]

You get on that phone! And yes, I come from a family of nurses, although I was in education. My sisters and daughter look after everyone but themselves! So..next time i get a message from you, it will be saying how you just called your ortho! I also have seen my opthamologist and asked him to be part of my “team”, so he sees me every So months to check for dry eyes, etc. Dentist every six as well. I am truly grateful for the care i am getting…..

[DonnaBoll Administrator in reply to Gaspereaux]

ok.. I'll do it. 🥴 I do have my eyes checked every year and dentist every 6 months. Just had my mammogram done yesterday....

[Gaspereaux in reply to DonnaBoll]

Do you have mammograms more often?

[DonnaBoll Administrator in reply to Gaspereaux]

I did call my Ortho..they don't have anyone who specializes in 'backs or spines'. Will call my primary tomorrow for a referral to someone else. It is a process, isn't it?!

[Gaspereaux in reply to DonnaBoll]

It is….be sure to call! I’m counting on you to do it! Donna, are you in the mid West?

[DonnaBoll Administrator in reply to Gaspereaux]

I live in Missouri - about 50 miles west of St. Louis.

[jnblack]

Hi, it may be a pinched nerve in your back that radiates to your legs. Monitor your sleeping position.not on the stomach but straight on your back. If possible a pilllow under your two knees bent. If o help consult doctor or even if helps and issue comes back.

[Gaspereaux]

thank you so much, jnblack! I do sleep with a pillow and i am hoping it is just a pinched nerve or even a ruptured disk. Been going on since last summer.