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Sjogrens Topics => Living With Sjogren's => Topic started by: powderpuff on May 09, 2013, 09:57:35 AM

Title: Awake all night with bone pain
Post by: powderpuff on May 09, 2013, 09:57:35 AM
Has anyone ever experienced bone pain? It kept me awake all night last night. The pain started in the crook of my right elbow and forearm a few days ago and is now in both legs (more painful in right leg). It is a deep, aching, waving type of pain. I don't know how else to describe it. The pain causes me to drop whatever is in my hand or sit down and takes my breath away because it is so painful.


Is bone pain typical of Sjogrens?
Thanks, Powderpuff 
Title: Re: Awake all night with bone pain
Post by: Joe S. on May 09, 2013, 11:47:30 AM
I had weeks of this type of pain in my legs before my left leg broke.
Title: Re: Awake all night with bone pain
Post by: Carolina on May 09, 2013, 11:58:19 AM
Yes, bone pain is what I get when I add an infection to my conditions.  It is terrible.

Try my Pain Management Techniques.

It's best to practice them BEFORE the pain gets too bad.

I cannot take any of the opioids, so this is my life line.

Hugs 

Elaine

My pain is mostly related to my Osteo Arthritis I think, but I think anything that causes inflammation can set it off.
Title: Re: Awake all night with bone pain
Post by: grammad97 on May 09, 2013, 02:44:34 PM
I get horrible bone pain and try to do all I can to get comfortable and relax and focus on something other than the pain. I have pain RX thank goodness but there are times when its not enough and I don't want more pain RX to take.
Title: Re: Awake all night with bone pain
Post by: powderpuff on May 09, 2013, 10:41:59 PM
Sorry that you suffer from this pain also. It is painful and annoying.

Elaine, I will glady try your Pain Management Techniques, it sure can't hurt.

Hugs to all,
Title: Re: Awake all night with bone pain
Post by: Jenny on May 10, 2013, 04:19:39 AM
I had this last year. My doctor checked me for Vitamin D deficiency and I was extremely low. I started taking very high doses of D for a month or two and now take 2000 daily. The bone  pain has disappeared.  Now if only my back, neck and shoulder pain would too! :)
Title: Re: Awake all night with bone pain
Post by: Joe S. on May 10, 2013, 07:01:37 AM
Jenny, there is a fleshy ridge between your thumb and index finger. Massage the muscle in between the two. This is called the Hoku point. It will trigger endorphin release to your neck and shoulder on the side that you are massaging. This is part of reflexology and acupressure. Endorphins are your bodies own pain killers and they are 1000 times more potent than morphine.
Title: Re: Awake all night with bone pain
Post by: powderpuff on May 10, 2013, 05:07:24 PM
Jenny,
I was Vitamin D deficient last year and had to take high doses. After completing the regimen, I was vitamin D toxic and was asked to stop taking it immediately. When I visit my PCP I will ask her to check my vitamin D levels. I hope you feel better soon.
Title: Re: Awake all night with bone pain
Post by: Alyson Wissinger on August 06, 2013, 06:38:57 AM
I have almost constant aching pain in my hips, knees, elbows, with shooting pains in the bones between knees and ankles, and elbows to wrists. I also have low Vitamin D3 but this did not start until that was already improving so I don't think it's related.
Title: Re: Awake all night with bone pain
Post by: ellenkerr on August 06, 2013, 10:40:21 PM
Last fall I had about 6 months where my thigh bones would hurt, especially the right one.  I didn't know if your bone could feel pain

or it was coming from deep muscles, but it just felt like my bone was aching.  It hurt so bad I could get very little sleep.  I had

mentioned it to my PCP, who acted like I hadn't said anything, and gave me the look...what's new?  You hurt everywhere.

I mentioned it again several months later and she said I could try going off my statin medication, that they can cause leg pain.  She said

it might take several months to know if that was it.  I had started supplementing with D3 and was doing better.  Then I went off the

statin.  Whatever was causing it went away.  I did then get diagnosed with osteopenia, so I am convinced it was hurting because my

bones were being ate up.  My last blood tests showed my cholesterol went up and I went back on statins and haven't gotten the leg

pain back.  I think adding the D3 may have helped me...or it was just a coincidence.
Title: Re: Awake all night with bone pain
Post by: powderpuff on August 07, 2013, 03:03:21 AM
Last fall I had about 6 months where my thigh bones would hurt, especially the right one.  I didn't know if your bone could feel pain

or it was coming from deep muscles, but it just felt like my bone was aching.  It hurt so bad I could get very little sleep.  I had

mentioned it to my PCP, who acted like I hadn't said anything, and gave me the look...what's new?  You hurt everywhere.

I mentioned it again several months later and she said I could try going off my statin medication, that they can cause leg pain.  She said

it might take several months to know if that was it.  I had started supplementing with D3 and was doing better.  Then I went off the

statin.  Whatever was causing it went away.  I did then get diagnosed with osteopenia, so I am convinced it was hurting because my

bones were being ate up.  My last blood tests showed my cholesterol went up and I went back on statins and haven't gotten the leg

pain back.  I think adding the D3 may have helped me...or it was just a coincidence.

I was already off my statin meds when I started experiencing bone pain. I am up tonight with bone pain in legs and arms. It has been a few months since I've dealt with it and now it's back again.
Title: Re: Awake all night with bone pain
Post by: grammad97 on August 07, 2013, 12:31:18 PM
Cholesterol rx- are bad for bone pain. My hubby didn't have high cholesterol bur because he was pre-diabetic the doc wanted him to take it as a preventative. He suffered horrible bone pain. My doc said if my cholesterol went up I couldn't take statins. I get bone pain occasionally if I don't stay on top of my RX and supplements regime. Funny thing is despite me taking pain RX and plaquenil and vitamin D my joints still ache and are stiff but not as bad as without RX. Pain at night seems to be the worst for most folks. Has anyone e tried biofreeze on their joints?
Title: Re: Awake all night with bone pain
Post by: irish on August 10, 2013, 04:51:39 PM
I didn't read this whole thread so forgive me if I repeat something already said. First of all, have you seen a pain management clinic?? Have you had this pain diagnosed as to whether it is bone pain or some other type of pain that might be misinterpreted as bone pain or referred to the bones???

Have you tried taking tylenol for bone pain or take tylenol along with your other pain medications. Tylenol works well for bone pain and is very often given along with the narcotics in treatment of bone metastasis in cancer. HOpe you find something that will help you. irish
Title: Re: Awake all night with bone pain
Post by: paisley62 on August 10, 2013, 07:32:35 PM
Bone pain - yes, and with no infection. All it takes is a really bad pain flare.
Title: Re: Awake all night with bone pain
Post by: SjoAmy on August 10, 2013, 07:42:16 PM
Right there with you tonight......my right leg is in pain in the bone below the knee.

Tylenol does help....
I took some tonight.
Title: Re: Awake all night with bone pain
Post by: Dee on August 11, 2013, 12:33:00 AM
Feel better
Title: Re: Awake all night with bone pain
Post by: susanep on August 11, 2013, 03:35:52 AM
For anything to rub on pain areas, I love biofreeze.

susanep :)
Title: Re: Awake all night with bone pain
Post by: Ripvanann on August 11, 2013, 11:06:06 AM
I'm so familiar with this pain and the endo surgeon described it to me exactly as you have described it! He says that (assuming you do indeed have hyperparathyroidism) it's the calcium being sucked from our bones. It's one of the more common complaints of his patients. It's also the most reported first symptom to disappear after surgery.

Again, we have other AI issues and we don't want to hang everything on surgery being a cure-all, but it will help!
Title: Re: Awake all night with bone pain
Post by: SjoGirl on August 11, 2013, 06:25:34 PM
Ripvanan, endo surgeon? Wonder whether the same pain might be caused by osteopenia? I was diagnosed a few weeks ago after complaining about hip pain.

I believe the osteopenia may be medication induced as I was on a proton pump inhibitor for about nine months (six months longer than I believe I should have been, terrible time weaning myself off of it with my PCps blessing, but not that of the gastroenterologist). Now I'm on Fosomax and praying it will help.

Tylenol helps sometimes, sometimes not.
Title: reply
Post by: Ripvanann on August 11, 2013, 06:55:17 PM
SjoGirl,

So sorry about you pain and the osteopenia. Yes, it was the endo surgeon who told me this because the hyper-PTH does suck the calcium out of your bones. You should actually take calcium supplements when you have hyper-PTH because it's being sucked out by the tumor secreting too much PTH, and then dumping it into your system (not your bones).

I have really bad osteoporosis in my spine (lost 2" off of my stature in less than a year and have not had a DEXA scan since then, that was over a year ago). DEXA showed osteopenia in hips, but limbs still looked good.

I have Steroid Induced Cushing's Syndrome, which basically is steroids on steroids, so that is what's really doing the majority of the damage to my bones (I also need all of my teeth pulled, but jaw looks good... it's bazaar). Anyway, I don't know if your meds did this, but definitely begin treatment ASAP. I can't take anything right now because of all of the dental work I need, but was on Forteo injections and did well with those.

Hope that helps. Again, sorry about the pain... I know it hurts bad. ~Andrea