New with questions

[Redetha]

I have the fibro along with SJS as well as other issues--I am addressing the fibro...for me I prescribed Cymbalta and it has really helped my pain.  Cymbalta is also used for depression so don't be fooled by that.  Cymbalta is often used to treat fibro.  I have had no side effects for it.    Hang in and check posts:  Hugs.  Redetha

[lighthouse33]

I found this article on the Fibro website that talks about exercise. 

http://www.fmaware.org/site/News2?page=NewsArticle&id=5269

A doctor who has fibro states about the exercise, do you want strong muscles that hurt or weak ones.  I guess you will feel better and be able to do more with exercise. 

I suspect I have fibro also (undiagnosed).  Recently started exercising, up to 10 minutes on the treadmill.  I still have joint and muscle pain every day but hoping I can work through some of that.  Although the doctor states that exercise is not a cure for the pain and fatigue.  I've been inactive for so long from the Sjogren's that I don't think that some of the pain is to be unexpected until I gain some stamina.  Sometimes I hurt so bad I don't want to but I force myself to do some every day.  If it will prevent more joint damage it will be worth it. 

[TerriJ]

Hi Christie and welcome!

I think your rheumy sounds like a keeper. 

I was diagnosed in a round about way. My PC had originally diagnosed me with fibro, but I had other odd symptoms like facial numbness, fasciculations, tingling and fibrating in feet and hands, etc. etc....  so he sent me to a neuro.  MRI of my brain came back normal and the EMG was normal with the exception of evidence of fasciculations.  The neuro asked if I had ever heard of Sjogren's Syndrome (I hadn't.)  She said she was going to do some bloodwork.  I never saw her again, but the results went to my PC and he called a rheumy and together they decided I have SJS and fibro.  My PC prescribed Plaquenil.  My ANA was positive and also a Anti Ro of 448.  My mouth is not dry, but my eyes are for sure.  Schirmer's test was positive.  I have lower punctal plugs and use Soothe eyes drops.    Of course fatigue has been a big issue!!!  I now see a rheumatologist at a teaching hospital and I asked him about a lip biopsy.  He said that even if it came back negative he would still give the same diagnosis.  I'm taking a low dose of Tramadol (Ultram) for pain and Provigil for fatigue.  Without these two meds I would not be able to function.  The Tramadol helps me to sleep at night as well.  I can now pretty much sleep through the night which never used to happen.  I guess that may be because my pain is more under control.  I also am in the middle of 8 wks. of physical therapy.  They taught me a lot of stretching and strengtheing exercises.  I have been told by all of the doctors that I should start to exercise because it can help the fibro I guess.  They said to start very slow.  I hurt mostly the following day after doing just a little walking (maybe 1/4 - 1/2 mile.)  It makes me not want to do it.  Right now my other exercises take so much time that the walking has been put on the back burner.  Oh, I also have chronic myofascial pain.  Acupuncture is helpful, especially if they attach a tens unit to the needles.  As far as suppletments go, I take Fish Oil, ALA, Evening Primrose oil, Oxci-cell, l-glutimine, vitamin d, sublingual b-12, calcium and magnesium...I think that's it?  I tried taking Plaquenil and even though I started very slow I had major stomach pain.  I desperately want to take it.  Maybe I will be brave and try again.

I didn't mean to go on and on, but I found once I started typing it just poured out.

Terri

[lynnmarie219]

Hi Terri,

I am in 100% agreement on the provigil...without it I would not be able to continue working and driving safely due to the extreme fatigue....for me this medicine has also been a lifesaver! My rheumy was hesitant to prescribe it, but the neurologist wasn't and since they are right next door and they work together with me I have been taking it for awhile now! 

I'm glad that its helping you as well!

[Christie]

Hi Terri, lighthouse and Redetha,

It sounds like I need to ask the Rheumy about provigil because I am having major exhaustion issues along with the pain. The problem with trying to exercise is that I work long days and with the commute an hour each way, by the time I get home and get what absolutely needs to be done, I am dead tired. I also have chronic Plantar Fasciitis and knee pain so it hurts to even walk and I do not swim. The Rheumy diagnosed the Plantar Fasciitis but I had had problems for almost 20 years since working on my feet on a hard service all day long and have been diagnosed years before. I have tried stretches and paid a lot of $ for orthodics but nothing helps but staying off my feet.Thankfully, I finally got a job where I don't have to be on my feet at work often anymore. I used to lift weights but now that is difficult and makes my hands and arms ache and tingle even more than they already do. I feel like such a mess!

Someone asked me about a sleep study, no I have never had one and none of my doctors ever suggested one. I was told that all the medications that help with sleep cause even more dryness so they would not prescribe any because of the Sjogren's.

I was also told by Neuro that I have tremors but not to worry about them??? Does any one have those? He said they're not that bad yet.

Terri, can you give more more info on the Evening Primrose oil? Does it help with your eyes?How much do you take?

Thanks everyone for the welcomes and information,
Christie

[TerriJ]

Christie,

To be honest I haven't noticed that the Evening Primrose oil or fish oil have helped with my dry eyes.  I think they are supposed to help with inflammation and I think the EPO is supposed to help with nerve problems too, but not sure.  I am in my office so don't know my dose on the EPO, only that it was the highest dose cap the store sold and I take 2 a day.  I will try to check and post later.

I had planter fasciitis, but was fortunate that orthotics took care of it.  I do have chronic myofascial pain in my back, neck and who knows where else.  Plantar fasciitis is also an issue with the fascia as I understand it.  I wonder if trigger point therapy or injections can help with this?

I cannot take any sleep aides because the two I have tried made me feel very depressed.  The low dose of Tramadol helps with my pain and I think slows down your system and I do sleep better.  Killing two birds with one stone...

Christie, I don't know how you keep up with your work!  I commuted for about a year, but that was 11 yrs. ago.  Travel time was about 3 hrs. out of my day (round trip.)  I was always exhausted and that was before I had all of these other things going on.  My husband and I have our own business and the office is on the property.  I am lucky because if I had a regular job I doubt I would be able to keep it.

I had a sleep study done and the only thing that showed up were alpha intrusions which I guess is common in fibro and is an indication of pain disrupting your REM sleep or something like that.

Terri

[Chickpea]

Hi Christie

I feel exhausted just reading about your working day!  And the very idea of lifting weights ...!

It's good to read about your journey to a SjS diagnosis and treatment.  We all have stories of odd things doctors say, but you've added some good 'uns: 

- I love the idea that 'all meds that help with sleep' cause dryness so you can't have them.  The doctor may be thinking of Amitriptyline/Nortriptyline which used in low doses (10 mg for most people) can help with nerve pain and insomnia, but in higher doses are drying.  Many of us have found them very useful - I'm sure others will be along to tell you what's helped them.

- The neuro who said your tremors 'aren't that bad yet' and 'you shouldn't worry about them'!  Wonderful - what are you supposed to do with that information?!  SjS sometimes comes with central nervous system involvement and that could be the reason for the tremors, but there could be other causes.  The neuro should be investigating them and treating them, not coming up with platitudes.  I've found that Plaquenil and Prednisolone have helped with some of the tremors; others have different experiences. 

Keep asking questions about specific issues and we'll do our best to help.

Take care - Chickpea

[theosof]

Christie- Hi....Me again..... You mentioned that you can't get a diagnosis because the blood tests are normal- Mine were too- my Rheum did a salivary scan on me which was positive. Plus you can get a salivary biopsy if the scan is negative....

So far I've been able to manage my pain w/ ibuprofin but I make sure I have food in my stomach as it can bother the GI linig... If you have an issue w/ swelling it can aggravate that....

Good luck....