I've been diagnosed with SJS and fibromyalgia. In the past few months, I've had an increase in pain both in intensity and frequency.
Not sure what's causing the pain, so don't know how to treat it.
It's hard to describe the pain because it changes, but here goes:
Burning pain, sometimes tingling occurs all over but mainly legs and arms. This pain is always there, but varies in intensity, from hardly noticeable to wakes me up & I can't sleep.
Joint stiffness & pain in hips & knees, sometimes in elbows & wrists. It's also a burning pain, but feels more like it's from swelling or bruising.
Elbows & wrists hurt & are weak. About 3 years ago a dr. said I had carpal tunnel & had me wear wrist splints for a few weeks. This helped a lot & I didn't have problems with it much until about November. I've been wearing the splints off & on since then but am still having problems. Burning pain shoots up my arms into my shoulders & sometimes travels on down my back.
Jaws & neck get stiff & sore, again a burning pain.
I currently take 200mg Plaquenil twice a day, Evoxac, 30 mg Cymbalta, DHEA, Vitamin D, & fish oil. My dr. has given me a 6-day prednisone taper a couple of times in the past few months. This helped a lot for a couple of weeks. For a few days, the pain is gone & I have energy & it is so wonderful to feel almost normal. Then it all comes back again. I sure would like to find solutions that will give me more of those days!
My doctor talked to me last year about methotrexate & said I might find relief with it, but I wasn't ready to take that step. Now I'm considering it, as the pain & fatigue is really getting hard to live with. I'm also researching anti-inflammatory diets, & looking at how changing what I eat might help the pain. Just don't know how much diet can help relieve the pain.
I've read a lot of what has been previously posted on this board about MTX, and still having trouble making the decision. I'm a teacher & just started my summer break, so now is the best time if I'm going to try it. If I start it now, will I be past the "getting used to it" stage by the time I start work again the first of August? My job is VERY demanding & I'm trying to weigh what's the best options to try.
I'd appreciate any advice from your experiences with diet changes and/or methotrexate. Sorry for the long rambling post!
Stress can make all your symptoms worse. I hope your summer break brings you more sleep, less stress, and more easy physical activity.
Diet has made a huge difference for me in terms of inflammation and pain. I've tried a lot of changes. The biggest benefit came from simply going gluten and dairy free. For years, it reversed my symptoms and kept them away.
I'm now Paleo, which is mostly animal protein, nuts, vegetables, and fruits, heavy on the veggies. When I slip up, I feel the joint pain returning starting the next day.
I hope you can use the summer time to try different foods and see if you can get some relief through lifestyle changes. It's empowering to know you can make a difference in these afflictions.
These diseases have a way of progressing, even if we're doing everything we can. After Plaquenil, my rheumy suggested I add cellcept and that has made a big difference to me. I know a lot of people get relief from methotrexate. I hope you'll be one of them. Be sure to get regular blood work while taking it, to make sure your liver is handling it well.
Hello,
I would talk to your doctor (Rheumatologist?) right away about this.
I am intimately familiar with the types of pain that you are describing, and am also familiar with the unanticipated progression of pain, major pain, in Sjogren's Disease.
For me, the hips/spine pain, which I arbitrarily decided to call "core pain", is the most debilitating, but the pain of the arms and legs can get very bad as well. It can wake me up at night, and leg pain can also keep me from falling asleep - to say the least. All of it interferes with working effectively, either directly in the workplace, or indirectly by degrading sleep quality.
I don't know you, but if you are definitely diagnosed with Sjogren's based on physical symptoms in combination with positive ana, either positive SSA or SSB, or both, and possibly also a positive lip biopsy, then it appears to me that you are asking the correct questions about whether or not you should increase your treatment of Sjogren's.
Again I would say that you should ask your doctor these questions, but if you want opinions from this forum, then I would say you should very aggressively ramp up your treatment for Sjogren's if you want to make it through the next school year without missing large amounts of time because of Sjogren's pain and fatigue.
I would suggest that you talk to your doctor about possibly increasing your Lyrica to 150mg/day (the maximum dose) right away.
Then, I would suggest that you start taking that methotrexate as soon as possible if that is what your doctor is recommending.
As you know it will take some weeks to see if the methotrexate will work well for you, and you might possibly do better on a different medication. There are a number of different medicines that you can try if the methotrexate doesn't work. This will mean that you could likely be dealing with changing strong medications while you are working during the coming academic year. You can do it - unfortunately things like this are part of the Sjogren's lifestyle.
Based on what happened to me, I would say that it is possible that you are at the start of what could be a very serious situation, which is trying to work while you are sick with Sjogren's that is progressively getting worse. I would suggest that you use any tools available to adapt to your deteriorating health. Perhaps naproxen sodium (Alleve) might help in addition to your prescribed medications to cope with severe pain during a bad flare.
Various changes in diet help many people, and figuring out how to reliably get a good night's sleep, even during Sjogren's flares, could help you cope with the hardships of your job when your Sjogren's is acting up. I suspect that you know these things already, but it may be time to really take action now.
In short, follow your doctor's advice, and ask your doctor for help with things that might aggressively increase your ability to work. Start planning ways to cope with all aspects of Sjogren's while working. You are fortunate that you have the summer off to do some planning and start ramping up your pain and fatigue medications, and possibly supplements, if any of those help you. You are off to good start just by thinking ahead enough to ask questions of your friends here on this Forum.
I have had great improvement so far - and very few side effects - with methotrexate. I have been on it for about a year, and was very afraid at first.
My key bits of advice (though everybody is different, of course):
- Take daily folic acid - it helps with side effects (I take 800mcg/day, but you can take more)
- Take your Mtx on a FULL stomach.
- Take it at night so you sleep through the side effects (I actually always sleep BEST on Mtx nights)
- You might talk to your doc about splitting the dose - I take 10mg Monday night and 10mg Thursday night - fewer side effects for me, and less "down-time".
- give it a couple of months - side effects often fade over time
- right now, my main side effect is hair loss - it's not horrible, and it's worth it to feel better - but my hair is definitely thinner :(
- drink lots and lots of water to help your liver deal with the drug
- i have chosen to go pretty much completely off alcohol (I have the occasional half-glass of wine in special occasions) to protect my liver. i have also noticed alcohol makes me feel REALLY lousy now i am on Mtx!
As far as diet goes, it has helped me a LOT to go GF (gluten free) and DF (dairy free) - though i seem to do okay with goat and sheep-milk products, and small amounts of super-aged cheeses like parmesan. Many people also have trouble with nightshade plants (potato, tomato, peppers, eggplant), but they feel okay to me in moderation. Everybody is different - you just have to try an elimination diet and then occasionally add things back in to see what they do to you.
I also feel best if I keep carbs (grains, sugar, etc) to 15% or less of my overall diet - basically, sort of a "modified Paleo" diet. I mostly eat veggies, fruit, lean meats, fish, eggs, nuts - and a few whole grains. I'm not super-strict about it - I just kinda let my body tel me what it needs and what it doesn't do well with. It took me close to a year to really get used to this new way of eating, after 43 years of being the Bread-and-Cheese queen!!!! ::) But now I really like it - I lost my old cravings (mostly) and really enjoy feeling better - more energy, less achy, sleep better, etc.
Best of luck to you, whatever you decide....
Wow, THANK YOU SO MUCH for all of the wonderful information and advice!!
I am sero negative & haven't had a lip biopsy. My rheumatologist diagnosed me based on symptoms & Schirmer's results showing very dry eyes. I'm not taking Lyrica, but did take it a few years ago when I had Shingles. I had some problems with side effects from the Lyrica, not real bad, but enough to not be sure if the benefits are worth it. I already take naproxen a LOT to help with the pain. Some days it doesn't touch it though. When flare ups are bad, I take nucynta, a pain med that basically knocks me out. I can only stand to take a couple of doses of the nucynta though, as it begins to make me nauseous.
I'm still undecided if I should try diet changes first, then see if it helps enough not to need methotrexate, but from what you're saying it sounds like I should do both?? I know that if I do start methotrexate it should be now in the summer while I'm not working, but I'm still just hesitant to start such a serious drug until I've exhausted all options... So hard to know what to do! I missed a great deal of work last year & the year before that. I ran out of sick days & lost several days of pay, not good. I can't afford to miss so many days this next school year. In addition to being difficult financially, I hate being out so much away from my students. I take great pride in my job as a teacher, and it's so difficult to not be able to do a good job.
What also makes the decision hard is my sweet, supportive husband who is very worried about me taking strong meds & the long-term effects of those meds.
I have an appointment with my rheumatologist July 11, but really want to see if I can get in to see him sooner.
Thanks again for "listening" and for all of your advice to help me sort things out!
One thing to keep in mind is that NSAIDs (Ibuprofen, naproxen/Aleve, etc) do NOT mix well with Mtx - so if you take a lot of pain relievers, you should find some alternatives. Hopefully the Mtx will alleviate symptoms well so you don't NEED all those NSAIDs, but the transition could take a while and be a bit uncomfortable.
Also, I am not completely convinced that low-dose Mtx is any more dangerous that taking lots of naproxen or ibuprofen - more and more research seems to be showing that chronic NSAID use can be just as troublesome (or more so) than Mtx.
I (and many others on this forum) find that using a turmeric-based supplement like Zyflammend or TumericForce can be a pretty effective substitute for NSAIDs, without the side effects or cross-reactivity with other meds like Mtx.
Of course, don't take ANYTHING without first asking your doc. Mtx DOES cross-react with a LOT of other medications, including antibiotics - so it's a good idea to use an online drug-and-supplement interaction checker (there's a good one at Drugs.com). Doctors and pharmacists don't always catch everything, and it can really help you - especially if you are wondering if it's okay to take some OTC medication with your prescriptions.
I don't mean at all to push the Mtx - it's a serious med and you should think a lot about using it, and talk to your doc to weigh the options. I am just giving you my experience so far (only a year). I have been healthier and happier on it that I was for YEARS beforehand, and I wish I had started it sooner. Mtx has side effects - but untreated/under-treated autoimmune disease also has some very serious effects!
The important thing is that you don't give up - if your quality of life is not good, you should work with your doc to try some new treatments to try and solve that. Treating these disorders is not an exact science - some of it is just TRYING stuff if it works for you, great - if not, you move on to something else. But don't let the disease rob you of your life in the meantime - keep fighting it! :)
Sleepy in Seattle,
I looked at Turmeric Force at the vitamin shop today. It says to take 1 softgel a day that has 400 mg of turmeric. However, I've read on several websites about taking turmeric for inflammation that you should take 400 - 600 mg 2 or 3 times a day.
So I'm not sure how much to take? And do you take it on a regular basis to help prevent inflammation, or do you take it as needed like you would naproxen when inflammation is causing pain?
I can't get in to see my rheumatologist before July 11. So I researched other rheumys a few miles away & today I was able to get an appt. with a new dr. for next Friday, June 7. So my plan is to see what he says about what I'm taking & see what changes he recommends. If he also thinks methotrexate is the way to go, then coming from 2 doctors I'll be ready to try it & my husband should be more convinced as well.
I'm definitely not giving up! I love my job as a teacher & want to keep at it. Thank you so much for all of your information and encouragement. :) I know everyone is different and we all have to try what works for our specific problems, but it still helps to hear from others who've been there and found what works.
Quote from: MiJoy on May 28, 2013, 06:19:27 PM
Sleepy in Seattle,
I looked at Turmeric Force at the vitamin shop today. It says to take 1 softgel a day that has 400 mg of turmeric. However, I've read on several websites about taking turmeric for inflammation that you should take 400 - 600 mg 2 or 3 times a day.
So I'm not sure how much to take? And do you take it on a regular basis to help prevent inflammation, or do you take it as needed like you would naproxen when inflammation is causing pain?
Hopefully others will weigh in on this too, but I take the recommended dose daily (whatever the bottle says - sometimes I switch brands, and each one is different) - then, if I am particularly achy I take an extra dose. Different brands have different levels/concentrations of the active ingredient in turmeric (which is called curcumin). The stronger formulations list how much curcumin is in each dose, often listed as a "supercritical extract" - the less potent brands are just turmeric, without supercritical concentrations of the curcumin. (I think TurmericForce is one of the more concentrated brands). There are good arguments for each formulation - but generally you have to take a higher dose of the plain turmeric to get the same effect. Then again, you pay less - it's really up to you. In general, I like the more concentrated ones because I feel like I get more bang for my buck, and because I get tired of taking so many dang pills - I'd rather use the more concentrated versions. Also, some cheap supplements come from really sketchy sources and contain almost no active ingredients, or are not terribly sanitary, etc - you have to be careful.
If you search around a bit on the internet, there's some good info out there. I like Dr. Weill for good information....he sells supplements, but he also shows you the research so you can figure things out for yourself - you don't have to buy his stuff. Bastyr University has great info (I also like them because they are local for me, and have a great reputation). Just make sure you are reading stuff from reputable websites/sources.
And none of it is a "magic bullet" - I tend to think that the key is really to balance the "natural" remedies with standard medical care - the two can complement each other quite well if you are cautious and do your research - and of course clear everything with your doc. Some herbs and supplements can affect test results (particularly liver tests, which you should have at least quarterly if you are on Mtx), so it's really important your doc know what you are trying. (I don't believe turmeric is in that category, by the way).
Those are just my opinions - but I hope they help!
I've put almost all my health problems into remission using diet. I follow Dr. John McDougall's diet - it's anti-inflammatory. I started to feel better quickly - it's been 5 years now so I don't remember how quickly but I definitely found differences within a few days to weeks.
I had fibromyalgia - gone - no pain, not tired, sleeping well all night and wake well rested.
SJS - still have dry eyes and mouth - the diet put lots of things into complete remission but some damage was permanent - the lost glands didn't grow back. OTOH they mostly seem to be the same.
Myositis - I was so weak in my arms and legs that I couldn't get up out of a chair and could walk only a few steps with lots of pain. Couldn't make meals or set the table because arms were too weak. Only relief was while I was on steroids. OMG - gone, gone, gone - I can now walk all day long, hike in the woods, walk up a dozen flights of stairs. This diet was more effective than high doses of steroids.
Arthritis - completely in remission - I've had osteoarthritis since I was a kid - even knocking my leg against a desk caused my leg to swell up and I was unable to weight bear......... after being on this diet for a few months, I fell - landed on my knee with 100% of my weight since I didn't have time to use my hands to break the fall. Unbelievable, I was able to walk, exercise, go up and down steps and had no swelling - the only way I knew I had fallen was a small bruise on my knee and when I touched the area it was really painful - I never have swelling in my joints and no pain since I changed my diet.
Cervical disc disease - that nasty electrical feeling and numbness in both arms - gone, gone, gone and I hope it never comes back since it used to wake me up at night. Part of this was changing my posture which along with reducing the inflammation using diet made it go into remission.
Peripheral neuropathy - tingling, burning pain is completely gone into remission. However if you prick me with a pin during a neurological exam I still can't feel it and my Babinski reflex is abnormal. I also used to get foot drop in both feet intermittently and I haven't had that in 5 years either.
Allergies - since I was a kid, asthama, multiple attacks of bronchitis each year - even broke ribs thanks to bronchitis ----- thanks to the diet all in remission - I don't take any antihistimines, no more inhaler, no more nasal spray - nothing and here I am hiking in the woods during the worst pollen, been in moldy caves etc. - no medication needed.
Mental Clarity - seasonal affective disorder/depression, mental fog ------------all in remission and off all medication.
The only medication I take is Plaquenil and I took a vacation from it thanks to the diet. I then had major surgery and has some SJS problems come back- mild problems so I went on it again and now I'm thinking of going off again. I also take B12 every day - just those two pills - don't need anything else.
I could go on and on and on with things like this - irritable bowel, irritable bladder - irritable everything - gone, gone, gone. But I know if I cheat on my diet, it will all come back.
Dr. John McDougall has a website with all the information about his diet for free - don't have to buy anything. I borrowed his books from the library, his most recent on is The Starch Solution. I found this diet reading a book by Dr. T Colin Campbell called The China Study: The Most Comprehensive Study of Nutrition Ever Conducted And the Startling Implications for Diet, Weight Loss, And Long-term Health which I think everyone should read - this book changed my life and from it I found Dr. John McDougall and his diet. BTW, Dr. McDougall has done research in rhematoid arthritis and currently they have a study with OSHU on Multiple Sclerosis which I'm patiently waiting to see those results. And Dr Campbell's book has a section on autoimmune diseases.
The only regret I have is that I didn't know about this diet earlier - maybe if I had started eating this way earlier, maybe I wouldn't have had SJS? I will never know.
Edited to add I also still take my levothyroxine along with the B12 - these are the two that I will have to take for life even if I take another vacation from Plaquenil.
skylar, that is amazing! I started the McDougall diet about 23 years ago and it really helped me feel fabulous!
Long story short, diet is what keeps me going these days. A few years ago I got very ill with symptoms like many that are discussed here. I went from a healthy diet to all raw and 90 percent of my symptoms went away.
I think all raw works for me as there is no room for cheating. Then I went off of the all raw and still ate healthy but added lots of processed "healthy foods" popcorn, gluten free chips, gluten free cookies etc...and ate less and less greens and salads.
Over the last few months the neuropothy, muscle soreness and fatigue has come back to a greater level.
I have been on a strict all raw diet again for 5 days and am already feeling much better.
I know if i ate the standard american diet I would be a real mess.
What a journey! :-\
Wow, Skylar, your story is incredible & every doctor needs to hear it! I went to the bookstore yesterday to look at diet books, and was overwhelmed as I am when researching online. There is so much out there and it's so hard to discern what will work for me. I've been leaning toward trying gluten free. I've looked at Dr. McDougall's diet before, but again was so unsure. Also, there's no way I can try a drastic diet change during the school year.
My whole focus during my summer break is going to be on overhauling my diet. I sure hope I have as amazing results as you've had, Skylar! I'm going to our library TODAY to look for his books and will get started.
What is the best book of his to get started with? I'm researching his website now, and he does have a lot available free.
Each time I'm in a flare & take a 6 day steroid pack, there are a few precious days when I feel wonderful, no pain, no fatigue, lots of energy, you know... normal. Oh, how wonderful it will be to feel that way more often!
Quote from: adaubrey on May 29, 2013, 06:32:43 AM
skylar, that is amazing! I started the McDougall diet about 23 years ago and it really helped me feel fabulous!
Long story short, diet is what keeps me going these days. A few years ago I got very ill with symptoms like many that are discussed here. I went from a healthy diet to all raw and 90 percent of my symptoms went away.
I think all raw works for me as there is no room for cheating. Then I went off of the all raw and still ate healthy but added lots of processed "healthy foods" popcorn, gluten free chips, gluten free cookies etc...and ate less and less greens and salads.
Over the last few months the neuropothy, muscle soreness and fatigue has come back to a greater level.
I have been on a strict all raw diet again for 5 days and am already feeling much better.
I know if i ate the standard american diet I would be a real mess.
What a journey! :-\
adaubrey - WOW, I'm so impressed and envious that you found McDougall's diet 23 years ago.
I really ,really, really wish I had too - I just think of all the health issues I would have avoided - all the doctors I wouldn't need to see, all the pills and other treatments..............
McDougall diet was so quick and effective and better than anything my Drs gave me, including steroids and the only side effect was getting healthy and feeling great. I'm so glad you posted - I usually feel like a lone spokesman for what this diet can do. I don't do raw, I do a mix of cooked and raw but I do avoid processed foods so I'm not eating cakes or cookies, no chips and no gluten etc.
Quote from: MiJoy on May 29, 2013, 07:50:20 AM
Wow, Skylar, your story is incredible & every doctor needs to hear it! I went to the bookstore yesterday to look at diet books, and was overwhelmed as I am when researching online. There is so much out there and it's so hard to discern what will work for me. I've been leaning toward trying gluten free. I've looked at Dr. McDougall's diet before, but again was so unsure. Also, there's no way I can try a drastic diet change during the school year.
My whole focus during my summer break is going to be on overhauling my diet. I sure hope I have as amazing results as you've had, Skylar! I'm going to our library TODAY to look for his books and will get started.
What is the best book of his to get started with? I'm researching his website now, and he does have a lot available free.
Each time I'm in a flare & take a 6 day steroid pack, there are a few precious days when I feel wonderful, no pain, no fatigue, lots of energy, you know... normal. Oh, how wonderful it will be to feel that way more often!
You know MiJoy - I didn't write even half the stuff this diet put into remission - it's amazing. I know how you feel on those steroids - you will feel better on this diet. But it makes me upset and mad at my Rheumy - he saw the before, during and after and he can't explain it and the difference is day and night but he says that he couldn't change his diet, he likes the way he eats so he couldn't ask any of his patients to change theirs.
My PCP also saw the changes and she did read the books and made a lot of changes to her diet and she is now gently encouraging her patients to make some changes. Same with my Ophthalmologist
My dermatologist also said she couldn't change her diet so she would recommend it - but the last time I saw her she had come back from a conference where she was excited to tell me someone was using a similar diet and getting fabulous results and she was going to look into it and recommend it to some of her patients.
A lot of my other specialists - well I just haven't needed to go back to them so they never got to see the changes.
There are two books that perhaps are best to start with: both are well written and explain the diet. I have read everything on his website - amazing and generous resource.
1)
Dr. McDougall's Digestive Tune-UpI had a lot of problems with my whole digestive tract since I was a kid. The scariest was episodes of Vasovagal syncope where with little warning I would pass out while on the toilet and wake up on the floor. I found this book to be extremely helpful and clear. And I haven't had a vasovagal syncope episode since starting this diet.
2)
The McDougall Plan for Maximum Weight LossHe recommends that patients with lots of health issues avoid processed foods - especially when foods are ground up into fine particles such as with bread, pasta etc. Even if you start with whole wheat - when it's ground up fine and you eat it, it can dump immediately getting absorbed quickly since the particles are so tiny - smaller than even your body can chew/digest. Eating whole wheat berries - that you digestive tract slowly breaks apart so absorption is slow into the body.
The Maximum Weight loss - doesn't allow any foods made with "flour" where as the regular plan does allow for bread and pasta, cakes and cookies according to your health and weight. The thing is the MWL book is geared to help people lose weight so if you don't have to lose anything, there are several things in the book that you would do the opposite. So for example people losing weight need to avoid eating dried fruit or juices and stick with fresh whole fruit- you could eat dried or drink juices. You could also eat avocado or olives and other higher fat veggies.
This diet is so powerful that for the first month or so I was on it I was eating home made whole wheat bread and whole wheat pasta - that was until I found the MWL program. I later found out I have celiac disease - so even though I had been eating gluten every day for a month, getting rid of those other foods still had a huge healing effect. Getting rid of gluten helped of course but I find it amazing how well I could do even with gluten.
As for healing - I know with celiac - when the do follow-up biopsies - it can take two years for a biopsy to become normal after a patient completely avoids gluten. So some health issues do take time to heal, but others are very quick.
BTW, I had read The China Study by Dr. Campbell first and that really made me understand why I had to make these changes in the diet. There are other similar diets but I found Dr. McDougalls made the most sense for the way DH and I eat - I can buy all my food in a regular grocery store if I want and it's cheap and easy.
I went to the library today and found The McDougall Program for Maximum Weight Loss and have another of his books on hold. I'm looking forward to learning & REALLY looking forward to feeling better!
Thanks again for all of your information. I may be asking more questions as I get into it. It will be hard at first, just figuring out what to buy at the grocery store & what to cook, & what to eat when we go out, but I know it will be worth it!!
Mijoy ,
Good for you! Yes it is hard at first but when you start to feel the payoffs it is soooo worth it!
Food can truly be medicine. I have eaten healthy for a long time, but I started eating processed healthy foods again and less and less fruits and veggies.
I started to have lots of body pain recently after a long stretch of feeling well so I went back to a pure diet. 5 days in I am already feeling much better!
You can do it!
When I began the McDougall diet many many years ago I had all kinds of stomach troubles and aches and pains. They all vanished and i also lost lots of weight. Our whole family followed the diet and my kids are still vegetarians.
While I do not ad hear to a McDougall diet now (I eat less grains and no gluten) I can tell you it works to help the body heal itself!