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Corella
12-27-2012, 02:27 AM
Hi everyone

I have Sjogrens syndrome which is quite severe at the moment and since the warmer weather has arrived and our temps are in the 40's, being sun sensitive, my pain levels have gone through the roof. I get a deep bone pain in my lower legs and lower back, it actually makes me feel sick.

Coupled with the usual muscle aches which are helped by mild gym work at the gym but my legs go really shaky, in fact I go really shaky when I work out so have to limit it and although a stretch offers very short term relief (as in a few seconds), exercise can make me hurt more but I do persist with it.

I am on MTX injections - only 10mg a week and since I have been on MTX (13 weeks now), I am bruising easily and my GP ran a blood test and it came back OK except for clotting factors which have to be redone - did those today.

He has ordered a bone density scan as I am on prednisolone and have been for nearly a year now and prior to that I have had 3.5 years of continuous steroid therapy when I was younger.

Do bone scans purely show up osteoporosis?

Do any of you get severe bone pain and muscle aches?

This sjogrens is really kicking my butt at the moment, I wake up in the morning not in pain, but so stiff it takes me an hour to get moving. I have one or two slightly tender fibro points but its nothing really.

With the summer being upon us where I live, I have to stay inside as just a small amount of exposure can make my joints swell and even attribute to more hair loss.

Have any of you had bone scans?

Thanks in advance

Bakedtater08
12-27-2012, 04:00 AM
I don't have sjorgens, but I have had bone scans. They can show a multitude of things. They are pretty well painless-minus having to lay still for quite awhile (if you "lock" up after an inactive period, you start getting the urge to move about halfway through)

In regards to the "bone" pain, I do get the deep bone like pain, and it is stomach turning. My Right leg is especially bad-it feels at times someone is shoving a screw driver into my shin & cracking it apart. I also get similar pains in my spine, but I have degenerative disc disease & arthritis in my back. I also get it in my elbow, almost a "broken" sort of pain. I assume its from the RA & gout, but there could be a different explanation, I'm not sure.

I hope you find a solution/aid in relief for the pain! And good luck on your scan!

Corella
12-27-2012, 05:50 AM
I get foot pain as well which when it comes on, I can barely walk. I dont look at the time in a normal way now, I look on it as 'panadol-o-clock' - panadol osteo is not bad as I cant take NSAIDs.

Oh well, just wait for the bone scan appointment to come through, my calcium and clotting factors were checked today and I have my MTX injection tomorrow.

Saysusie
12-27-2012, 01:58 PM
I also have Sjogren's, however I attribute my deep bone pain to my Fibromyalgia. This pain occurs throughout my body and is often accompanied by the feeling that my muscles are on fire.

One of the complications of lupus is its effect on bone tissue. Sometimes, an insufficient amount of blood reaches the bone, causing it to deteriorate and break. This is most commonly seen in the hip joint. About 10 percent of individuals with lupus develop bone tissue death
Bone tissue death and osteoporosis can also be caused by the medications taken for lupus. Corticosteroids (Prednisone/Predisolone) also eat away at the bone, causing osteoporosis and breakage.

I would suggest that you mention this pain to your doctor so that the cause can be determined and a course of action put into place to address this issue.

I wish you the very best

Peace and Blessings
Namaste
Saysusie

chikititalinda
12-27-2012, 02:56 PM
Can Sjogren's cause this type of pain? Unfortunately I was one of the lucky ones who developed bone tissue death (Necrosis) on both knees due to steroid usage. I would definitely discuss this possibility further with your doctor. A bone scan may pick on this depending on what stage the decease is, but usually the best test for this would be an MRI, its usually ordered after something's picked up on the scan. Hopefully its not anything like this, and hopefully you'll get a diagnosis and a treatment plan to keep you as pain free as possible. Please keep us posted.

magistramarla
12-28-2012, 05:12 PM
Corella,
I've also had the deep bone pain and was diagnosed with Avascular Necrosis in 2008. As SaySusie and Linda mentioned, steroids are the usual culprits.
However, I hadn't taken them, so mine was called "idiopathic", or unknown causes.
I also have Sjogren's, and after reading what SaySusie said on this thread, I think that I know the cause.
Mine was in my right knee, and it showed up clearly in the bone scan. I had arthroscopic surgery for it. I took a lot longer to heal than the surgeon expected, but when it finally healed, it helped a lot.
I also get the muscle aches. The muscles in my calves are in constant spasm, and none of the docs that I have seen seem to know why.
I'm thinking that Sjogren's has a lot more painful symptoms than any of the docs are willing to admit.
I hope that your bone scan shows something useful. In the meantime, be very gentle with the exercise. When the docs decided that I had AVN, I was ordered to keep all weight off of that knee until my surgery.
Hugs,
Marla

ItsLupus2007
02-09-2013, 08:11 PM
I am sorry to resurrect an older thread but wanted to add some to it in case any lurkers or newbies hit just to provide some additional info.

Sjogren's is in a nutshell almost a copycat illness of SLE with the addition of auto-immune attack on all moisture glands in the body.

This causes issue with dryness in the eyes,mouth,nose and vaginal area.

If you are seeing a Dr and they tell you that Sjogren's is simply dry eyes and mouth then they need a serious re-education.The dryness of the eyes is often so bad that corneal abrasions will occur.There are options for this including OTC treatments such as artificial tears and ointment for nighttime use.Please be sure that all the products that you use say on the packaging that they are Preservative Free...if they do not it is safe to assume they are NOT and there are several products made for "dry eyes" that contain them.They are not recommended because of irritation and inflammation they can cause dont use products like Visine etc as they will worsen the problem.

If you have dry eye issue and are thinking of having LASIK done PLEASE talk to the Dr considerig doing it and make sure they know you have Sjogrens and your treating eye Dr.Most who have dry eye(medically proven not seasonal allergy type) are not candidates for this surgery and any problems you have before will worsen horribly after.If the Dr who wants to do the LASIK is still willing to proceed after consulting with your optho and reading your history then please consult with a secondary Dr who is familiar with Sjogren's.If the LASIK Dr and the Sjogrens treating dr are one and the same start looking for a new one(I would)as they are likely IMHO only thinking of their pockets not your residual issues that can result from a combination of having this condition and having this surgery performed.

Ceiling fan use,direct air toward your face like your car vents and using the heat/air in your home will all cause issue.It is recommended that ceiling fans aren't used,a humidifier used in your home to help keep the moisture levels up.Restasis is a medication that can be prescribed to help you with making tears and relieve some issue.It does take a few months for it to work and is expensive even with insurance as it is still on patent and is a highest tier copay.

If it fails punctal plugs can be inserted by the eye dr to force the eye to fill up to the top tear ducts to drain instead of immediately draining from the bottom.The top can be plugged too if the dryness is very severe but often these are a last resort as the tears will not have anywhere to drain except down your face like you are crying.If you have them inserted and this occurs they can be removed.If you have plugs restasis is not shown/recommended to provide any relief-this is on their commercials and drug promotion site.If your eye dr tries to push restasis after plug insertion ask why as the compnay itself says there is not a benefit in people who have punctal plugs.If the plugs work for you but are constantly falling out requiring reinsertion the tear ducts can be cauterized shut.This is a absolute last resort and done only if punctal plugs work for you,provide noticeable relief but won't stay inserted as it is not reversible.

There are several "dry mouth" products on the market for use.Biotin makes a gum,toothpaste,mouth wash,etc.They are expensive.You can suck on sugar free candies to help stimulate saliva flow-the best are lemon drops as the sourness will cause the best excess of saliva.Good oral care and maintenance are very important as cavities develop quickly and easily due to lowered saliva function and allowing bacteria to breed and attack the enamel.

Vaginal issues are often compounded by medication use.You can talk to the dr about creams etc for this.

Sinus infections,fullness,dryness,sores and ear problems are very common and often cause a lot of pain and issue.You will often hear use an allergy medication only to be told by your eye dr absolutely not.So its kind of a damned if you do or damned if you don't who do I listen to type of situation.I use humidifiers religiously,keep my heat low and saline spray.Neosporin with a q-tip is good to coat the passages and to help with sores.Some people swear by a neti-pot I personally do not care for them as they seem to always cause me further issue.I often heat water on the stove and put my head over it covered with a towel to inhale the steam to help get the congestion out as it seems like the mucous is so thick it won't even blow out.The heat seems to help break it up if you can't/don't feel like taking a hot shower.

If your eyes are bothering you a great way to clean and relieve them is to use hot compresses for a few minutes,then use a very small amount of baby shampoo to clean the lash/lid area well and then rinse really well with as warm of water as you can stand.Apply the hot compresses(again as hot as you can stand)after cleaning to help open up the glands that are located on the lid area.These glands release oils that help lubricate the eyes and when they are clogged you will notice increased dryness issue.The baby shampoo can be done twice a day and the hot compresses as often as you like.If you notice any redness,swelling,discharge or matting upon waking use a different washcloth for each eye as it may be contagious and sterilize your hands before going from one eye to the other.Contact your Dr as this could likely indicate an infection.Never reuse the washcloth by letting it airdry whether you fear an infection situation or not.Use a new one each time you clean your eyes.

Like I said I just wanted to update this and provide additional info.

Sjogrens Primary is an AutoImmune condition that causes rashes,fatigue,joint issue including pain and inflammation and can cause organ damage.In Secondary Sjogren's the organ damage is not an issue but you do deal with all the other issues mentioned.Like I said it is almost identical to SLE in every aspect just the addition of involving some/most or all of the moisture tissue.

Hope this info helps others.