Hello,
I was recently diagnosed with Sjogren's and Fibromyalgia. I was referred to a Rheumatologist about the Sjogren's because I have a lot of the symptoms but a couple of the blood tests came back negative. I had read that you can have it even if the tests are negative. So I asked for a referral for the Rheumatologists opinion and possible lip biopsy. Anyways, I finally got my referral. He asked me a bunch of questions, looked at my skin, mouth and eyes, looked at my other test results (ANA) Positive, TPO elevated do to Hashimoto's) and said that I do indeed have Sjogren's and said 25-60% of people test negative on lab work even though they do have Sjogren's and went on to say that's why he goes by symptoms. He said there's no need to do a lip biopsy if the patient has the symptoms, why put them through that? I guess it's not all that pleasant?He was very nice so I was relieved because I was worried because of the negative blood work that he'd think I was a hypochondriac or something.
Then he did I guess what is the trigger point exam and it hurt like heck and asked me some more questions, asked me to walk, examined my feet and hand joints, and neck movements and said I also have Fibromyalgia. He said I know you didn't come here for that but you do have it. Anyways he went on to explain that I need to start exercising 5 days a week (too exhausted and in pain)and then said that the medicine that he would prescribe for Fibromyalgia to help sleep and with pain causes more dryness and that's would be no good for the Sjogren's and the medication he could give me for the Sjogren's causes ALOT of excess sweating, and doesn't help with the eyes at all anyways just the mouth (my main dryness is my eyes) so he didn't think I'd want that. He said I could try it if I wanted. I didn't' get the prescription since it didn't sound too great and I live where it gets to be 100 degrees and don't need increased sweating.UGH!
So I was wondering do any of you have Fibromyalgia on top of the Sjogren's? What medications do you take for the pain and continual waking during the night? Also are there any other medications that help with fatigue and dryness of the eyes.I already use Restasis and have lower plugs in my eye with no relief. My dryness is prety severe. Schirmer's is 0 in the right eye and 2 in the left.
Thanks so much,
Christie
Hi Christie :)
Welcome to Sjogren's world. You sound like you have a good rheumy there. It's good to here there are rheumy's out there who will dx on symptoms rather than insisting on positive bloodwork.
I've read in here that its possible to have upper plugs as well as lower plugs which can help dry eyes. What drops do you use apart from Restasis? It's my understanding that it has to be used alongside artificial tears. Personally I like celluvisc but what suits one sjoggie doesn't always suit another. It's trial and error!
Did your rheumy offer you Plaquenil? It's often offered shortly after dx because its meant to slow down the progress of the disease. (Slow as that is) A lot of people find it helps. It takes a while to work - often up to six months. It lessens the pain for some. I found it made me less fatigued and less brain fogged.
Do you take thyroxine? I have Hashimotos and if I'm undermedicated I hurt a lot more than if I'm not. I realise that there are different stages of Hashimotos and you may not need thyroxine yet.
I hope you find the site useful.
Take care - Scottie :)
Hi Christie,
Let me also welcome you to the SJS World! Please do look around as there are tons of topics that you might find interesting. Don't be shy, if you can't find the answer you're looking for in the forum, please do ask as there is usually someone about. Can't guarantee you the answer you want, but there are oodles of really great members that'll pass on what they've learned.
Like you and Scottie, I too have Hashimoto's, and fibro. I was diagnosed first with Hashimoto's, then SJS/SICCA (long story), and fibro among other things and the hits keep on coming. ::) ;)
I take Plaquenil for the SICCA, Restasis & fish oil for the dry eye, Levoxyl for the Hashimoto's, Flexeril & Lyrica for the fibro among others. I use the Lyrica and Flexeril mainly at night to help sleep, plus a pain killer - sometimes this combo helps and I can sleep 3/4 hours before waking, other times, well maybe 15-20 minutes. Like I told the ENT, I'm starting to feel like a walking drug store. Ugh.
Again, welcome and hang in there.
Take care -
Patze
Hello and welcome, Christie.
Please, when you have the chance, thank your rheumy for his approach if you haven't' already...a rheumy who treats and diagnoses based on symptoms, and doesn't rely on numbers on paper, is a prize!
I, too, am a bit surprised he didn't suggest Plaquenil, but he's right about the conflicting side effects of the treatments for fibro and SjS. The various OTC drops and supplements like fish oils can be very beneficial, but as already said, very individual, so trial and error is in order, and always let your doctor know of any OTC treatments you plan to try.
Hello Scottie,
I use a lot of other unpreserved drops along with the Restasis all days long and genteal gel at night before bed. I prefer Theratears for the day.I have tried dozens of drops but then come back to Theratears in the individual vials.
No, the Doctor didn't offer me anything medication except the one he said would cause excess sweating but never gave me the name of it. He only told me a chart with some stretches because I have daily headaches and and neck, and shoulder pain.The stretches haven't helped. He told me to exercise 5 days a week for 30 minutes which I haven't done. I work all day and with the almost hour commute, I am just too drained.
Yes, you can also get upper plugs and I go back to the ophthalmologist on June 2nd for a follow-up and will be asking him if that's an option.He didn't want to put in the lower plugs though because he said he doesn't like to put plugs in unless someones much older. Don't know why?But he said with the Restasis not helping and all my problems he said that's probably the best way to go now.
I take Levoxyl for the Hashimoto's. Does your medication make you feel any better? Ever since I began taking years ago, it I still feel the same, lousy. I tell the Endo this but they always say the same thing, that my levels are fine now and never change my dose.
Christie
Hi Patze,
So the Plaquenil helps dry eyes? Is that a medication that causes excess sweating? Is the sweating that bad? I guess I wouldn't care if it helped with my eyes. The medication the Rheumatolgist mentioned was only supposed to help me with my mouth.My mouth is a little dry but I can live with it.
I also take fish oil and take flaxseed oil. I know the flaxseed oil helps a little, not sure about the fish oil but guess it can't hurt. How much do you take? And like you,I take Levoxyl for the Hashimoto's but been taking it for 18 years and I still have all the fatigue and of course even more now with the Sjogren's and Fibro. The Endo keeps saying my levels are okay now with the medication and just ignores me or tells me to exercise.
Do you see the ENT for sinus issues? I had sinus surgery last year and now can't hardly breath at of the side that wasn't worked on.UGH!
Thanks for warm welcome!
Christie
Hi Linda,
Well it's a long story how I ended up with this particular Rheumatolgist. At first they didn't want to give me any referral because of the negative blood tests. See my primary had consulted with one of this other rheumyatolgist without my knowledge, about me and he said it CAN'T be Sjogren's with negative bloodwork. After I argued with my primary about having negative blood work but still possibly having Sjogren's, I was able to finally get a referral. But then my primary tried to send me that that one that said that about the blood work. I thought No way! When I looked him up on the website and saw he was mainly an Internist/Cardiologist who working in the Rheumatology dept. I called back and I said I would like to choose someone else for my consultation. I had already picked the one I wanted to go to because I saw he is board certified in Rheumatogy.
It's weird because on their website (Kaiser) you can see where they went to school, did their residency and what their training and board certification is in, and most of them aren't even in Rheumatology.One was Cardiovascular Disease (the one they wanted me to go to) and another was Nephology and Geriatric medicine, now I'm not that old,lol. Seriously though why would they have them under Rheumatolgists? They only have 2 out of the 6 listed, that are actual certified in Rheumatology so I specifically asked for one of them.My primary hasn't been any help.He's the one that tried to send me to the one that was Cardiologist,lol
Christie
Christie,
You are very lucky to have found a rheumatologist that would diagnose you based on symptoms. I just returned from Cleveland Clinic and still didn't have any luck. They did rerun my bloodwork and the results aren't yet available. Unless something has changed in my bloodwork, I don't have a diagnosis.
Even though I don't have a diagnosis, I am for the most part being treated. I would like to try Plaqeniel, but can't get a rheamatologist to give it me. I want to know if it will help my eyes. mouth, brainfog, joint aches. Some people have reported that it does. Then again, I could do nothing for me.
All the rheumatogist I saw did say I have fibromylagia. I tried Neurontin, but it didn't help. I was lucky enough to get a presription for Ambien for sleep. I haven't noticed a difference in my mouth dryness, or did I notice a difference in my mouth dryness while taking Neurontin. The Ambine defenately helps me sleep for 5 or 6 hours.
The medication for dry mouth the doctor suggested to you is Evoxac or Salagen. Both are made by different companies, with Salagen being the cheaper one. Both make me sweat, all though is get's worse with each dosage. My presciption says to take 1 Evoxax 3 times per day. I usually only take 2 because I don't want to sweat at work. Some people notice a difference between the two meds. I have taken both and at first the Evoxac worked better, but then I don't seem to notice a difference.
Well good luck and consider yourself lucky. I think it just a thing of luck when you can find a rheumy that will diagnose based on symptoms.
Hi Wynter,
Well it really wasn't luck I don't think. I had to choose this rheumatologist. The first one they wanted to send me to, said it can't be Sjogren's with negative bloodwork and I told them I need to go to someone else and I choose one from the website who I thought would be best. I also had a lot of symptoms and at the time my skin and lips were severely chapped, sores in my nose and mouth, my ANA and TPO positive, spots all over my face, actually he thought I had Lupus too, Plus all the notes and tests from the ophthalmologist and Neuro helped.
Can your Primary prescribe the Plaqeniel for you? Even though I like this rheumatologist, I'm not being treated at all with medication. I am in constant pain and have constant fatigue. He did not explain too much. He gave me a leaflet on both the Sjogren's and Fibro and said come back in 6 months.
Can you see a different Rheumy?
Christie
Hi- sorry to hear about your problems- the dry mouth is so annoying but at least I am staying hydrated from all the water I drink!! I was diagnosed w/ fibromyalgia about 15 yrs ago. I had what I thought was a pretty bad flair at the end of last year but it turned out it was Sjogren's.... I also have Hashimoto's.... The fatigue is the worst for me. I've started nodding off at work and I know my productivity is off- I find myself going from program to program and forget why I was switching computer screens. I was lucky to have found a rheumy who is also a phd in autoimmune issues and does accupuncture. I've just started w/ her but I think things will go well.... Having fibro and SS sucks. They compound each other and the fatigue seems worse. I had a sleep study and am awaiting the results. I think the pain is my sleep issue....I've been taking Lovazza (prescription strength fish oil) and I think it has helped my eyes a bit. I wish you all the best - it seems we all have to read a lot, share w/ each and hang in there-it is the best we can do...
Hi Christie and welcome to Sjogrens World!
As the others have said already...you are very lucky to have a rheumy that will diagnose on your symptoms only and it sounds like he did a thorough exam. The only thing he didn't do was to offer you some treatment plan (besides exercise) for your pain, fatigue and other symptoms.
I also have sjogrens, fibro, diabetes, asthma, etc. etc. etc. :o I am also on many medications...more than I would like to be, but I wouldn't take anything that I didn't feel helped me...so thats where I am right now. I found my fatigue so bad that I needed to take provigil and it has been my lifesaver. I truly don't believe I could keep working and communting without it! I'm also on plaquenil, mobic (anti inflammatory which helps a lot of us), and other meds for my other medical issues.
It's not uncommon to have sleep issues with fibro. Have you had a sleep study done as this may be helpful as well.
Read all you can and ask any other questions that come up......someone is always around and willing to help out!
Hi Christie,
Let me see if I can explain it a bit better, I was prescribed Plaquenil for some of the SJS/SICCA symptoms I have. No, Plaquenil was not prescribed for my eyes, it's prescribed for the exhaustion (and it helps a bit with some of the pain too); and like Scottie says, to help slow the progress of SJS. But I'm also on Lyrica for the neuropothy/fibro pain, Flexeril for the stiff & sore muscles of fibro, and both have an added benefit of helping me sleep a bit better.
Restasis used to work fairly well, but lately my eyes lids are getting sticky again, and when I put the Restasis in them, boy do my eyes sting! I guess I've developed a dry spot or two again. It always seems that when one thing gets better, another gets worse. ::)
I take 1200 mg's of fish oil twice a day, I was hoping that it would help the eyes a bit more, but I don't seem to have as many bleeds under the skin as usual - and that's a good thing!
I'm sorry to hear about your sinus issues, and boy, have surgery to fix one thing and another gets messed up, wow. What did the doctor say about it?
I'm on my third ENT, and this one at least is looking at the whole picture (so far anyway! ;)). I do go see an ENT for my sinus problems as I've had so many over the years. Now a days I get where it feels like I'm developing (have) a sinus infection (the pain/aches/swelling/fever/sinus discharge (usually clear)), but I've been told a couple of times that it's not an infection, but what it is, no one has said - yet. Hopefully this ENT will be able to figure it out.
Take care and I hope that you start feeling better soon!
Patze
Hi again Patze,
So the Plaquenil helps with the exhaustion? I could really use something for that because I am exhausted that's for sure. I have even fallen a sleep at work. Thankfully, I was alone in the office at time.l don't know how I can fight this fatigue much longer though. I can easily fall asleep at work, on my way to work, on my way home from work, It's ridiculous. I wonder why my rheumatologist didn't mention the Plaquenil? What's the point of being diagnosed if I'm not going to get any treatment?
The ENT won't operate on my other sinus unless it too becomes infected. Last April I developed Orbital celluitis due to sinusitis and that's when he operated on the right sinus. It was a nighmare. The pain from the orbital cellutitis was unbearable so I don't want to wait for that to happen again. After that I had to get steroid shots for 6 months to break up all the inflammation and help with the pain.I still have pain and it's been over a year since the sinusitis. I only recently been able to start being able to chew on my right side were the infection was. I tried to get a different ENT but my primary keeps insisting he's the best one there and insisted I stick with him.
Well, Thank you again for answering my questions,
Christie
Christie,
You asked if the general doctor can prescribe plaqeniel? In my experience, I tried to get my GP to do this, but he was hesistant and told me that a rheumatologist should do that. So far, none of the rheumies that I have been to think I have Sjogren's because of negative tests. I have had problems with extremely dry scalp and my skin easily get irritated. The dermotologist has been addressing that problem. She said the Plaqeniel would probably help. She even mentioned that she prescribes it. Maybe I could get her to give it to me. But I do want to be under the supervision of a doc that understands Sjogren's.
Hi Wynter,
No, I never asked the general doctor for anything other than a referral and he didn't even want to give me that because he said it cannot have Sjogren's with negative blood work.I had to fight with him for weeks before finally he gave in and gave me a referral. I don't dare ask him for any medication for a condition he doesn't think I could have.
I hope you can try the plaqeniel. I'm sorry you're having a hard time with your rheumy. I have had hard time with many other doctors so completely understand about not getting a diagnosis. I went undiagnosed/untreated with one condition from the time I was 12-25 but that's another story.
Do you take anything for the pain? Right now all I have to work with is over the counter stuff and it doesn't exactly help.
Are you able to see a different rheumatogist or are you stuck with the one they assign you?
Have a good day!
Christie
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
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.
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
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!
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
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
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
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....