Hi there,
I was diagnosed with primary SJS in 2012, but I am sure I have the illness far longer, maybe my whole life. Symptoms have been there all the time. Since the diagnosis my general physician has checked my blood for signs of SJS three times and everytime my ANAs where at 1:10.000, SS/A and SS/B postive and above the normal levels, RF too high and so on. Six weeks ago I finally found a rheumy in my area, which was hard enough because I live in a rural place.
On my first appointment the new rheumy again did my blood work with the same results as discribed above. Then, at my second appointment I had a long talk with him. He told me that my blood results confirmed that I have primary SJS and Grave?s disease. But all that would NOT explain my litany of symptoms, fatigue being the worst of them, because there was no "active inflammation" to be found in my blood (CRP etc.). Further he stated that he thinks that my fatigue is secondary, probably psychologically induced. After that he said he would get me on 400 mg of Plaquenil and strongly suggested I do three hours of cardio exercise every week to help my general health and most of all my psyche.
Since I left his office I am really stirred up. I have fought against the fatigue for the last 10 years, and earlier in my life was a big time runner, before I got sick. Everytime I do try to do exercise I feel just terrible now.
Now I am confused - am I just a nut case? Am I basically healthy despite the SJS as long as there are no signs of inflammation?
Oh my, what a flux you are in. Brainstorm some ideas for discussion with your PCP.
Fatigue: Graves could be a factor. As you browse the boards, you find that a number of us also have OSA (obstructive sleep apnea) which would also be a contributing factor to fatigue, from what I've read on the boards here pretty much most us struggle with fatigue that is NOT psychological. Sjogrens itself contributes to fatigue. Also, if you've been told you snore a lot, well perhaps a sleep study is in order.
On the Graves, is that being managed by an endocrinologist? If not, you may want to consider that specialty for that aspect.
I notice you're a paramedic. If you work rotating shifts, that does throw off the body's natural sleep clock - so there is another possible contributor to fatigue.
active inflammation Well, my sed rate until F/up last May was showing 0 value. Yet biopsies from non-related procedures showed chronic inflammation during the same period. No explanation for that, but my sed rate usually shows 0, yet all my doctors OBSERVE obvious inflammation in my everywhere. It is only since being on Plaquenil that my sed rate started showing a value.
Also on inflammation, again while minie is not measurable for many years on sed rate, every single MR of spine and tissue biopsy from various parts clearly reveal chronic inflammation. Why the sed rate and CRP don't reveal it, I have no idea. But then my body tends to run subclinical anyway.
As you browse the boards, you'll find a number of us has been through this same journey to appropriate diagnosis AND treatment, initially attributed to "psychological" when that isn't the root cause at all.
Sometimes we have to "kiss a few frog" doctors to get to the "prince" who doesn't automatically assume "psych" instead of considering the full scope of physiological root causes.
Sounds like his rx-ing the plaquenil shows willingness to treat. You may want to see how rheumy is on follow-up and if it's the same attitude, consider a second opinion.
Not sure what it is about some specialists lately slapping on the psych label. Seems to be a new trend.
Hugs
Amanda
Hello Cat, I'm so sorry. This is one of the most frustrating components of dealing with AI. I actually wrote my second article "A Picture is Worth a Thousand Lives" on this subject. If You & Me doesn't publish it, I'll post it here as I know that we can all relate (as Amanda said) to having glaring symptoms, said to be in (and/or brought on by) our heads. Some docs can see it all in front of them and yet they are blinded by tests.
You have more positive testing than I do, yet your doc is refusing to see the things that are negative, simply because the unreliable test says so. It's maddening. Amanda gave you some great advice. I understand that you live in a rural area, but please get a second opinion. In the meantime, the plaquenil is standard treatment for AI and whether a doc admits to obvious signs of inflammation or not, this would most likely be what they treat you with.
So hang in there, take the plaquenil and search for another rheumy who CAN see the forest for the trees, whilst you treat your disease with the plaquenil.
Hope that helps a bit.
Grace and peace,
~Andrea
Well let's see. If I went out and ran 5 miles right now, I would be fatigued. My CPR rate would be fine...but you can bet I would be tired so a Doctor telling me that there was no way I could be tired because my CPR rate was ok wouldn't set well with me.
I second the others suggestions to try another Rheumy. It's great that he's treating you, but you need someone that understands how autoimmune disease effects people without just relying on blood work.
Cat,
You absolutely are not nuts! Of all the doctors, a rheumatologist should know full well that sjogrens causes fatigue and that there are more symptoms to sjogrens than just dry eyes & mouth and joint/muscle pain. Pain alone can cause fatigue.
As for inflammatory markers, I am one of those mystery patients that have been negative always
for elevated CRP and sedrate even with visible signs of inflammation!
I was being treated for seronegative sjogrens with plaquenil, pilocarpine, restasis, & meloxicam.
Rheumy leaves that clinic and is replaced by new, just out of school NP, who tells me since my labs are normal now (had a high RF for several years but not sjogrens specific labs), that I don't I have sjogrens or any other AI for that matter, and perhaps I needed to see a psychiatrist. I really think they are teaching the new comers in medicine these days to push for that. Also seems to coincide with the DSM 5 criteria for somatization, the new diagnosis dujour'.
It is extremely frustrating and especially difficult in rural areas to find a good doctor. To travel to larger areas in search of a doctor can be daunting. I know for me, being in pain and sick with nausea, fatigue and more often than not, brain fog, driving any distance is a major feat. Having to drive 2-3 hrs. is near to impossible.
Now that you will be starting on Plaquenil perhaps you will gradually see a decrease in some of your symptoms.
Others have given good advice, and please know that you are not alone. Not in your symptoms or the way that doc treated you. Going forward, just be on your toes with this rheumatologist and if possible always take someone with you to your appointments. I find that I am treated differently
(for the better) when my husband is with me. Anytime a doctor suggested my symptoms were psychological, were the times I went alone. Since your PCP was instumental in getting you a diagnosis, perhaps he can work with you regarding the fatigue and other symptom issues?
Wishing you the best!
sassygal
Quote from: MirkeshCat on December 04, 2013, 02:21:47 AM
On my first appointment the new rheumy again did my blood work with the same results as discribed above. Then, at my second appointment I had a long talk with him. He told me that my blood results confirmed that I have primary SJS and Grave?s disease. But all that would NOT explain my litany of symptoms, fatigue being the worst of them, because there was no "active inflammation" to be found in my blood (CRP etc.). Further he stated that he thinks that my fatigue is secondary, probably psychologically induced. After that he said he would get me on 400 mg of Plaquenil and strongly suggested I do three hours of cardio exercise every week to help my general health and most of all my psyche.
I'm so sorry for you. I so wish there would be a device that would show them in big bright letters on a screen that "THIS FATIGUE IS NOT CAUSED BY PSYCHOLOGICAL REASONS".
To me, depression was first. And yeah, there was a time when I was depressed. And again. Also, during those times I had trouble with my thyroid numbers. But maybe there was a time when I had "just" depression, without thyroid- or other problems, I'm not sure. Then, I had what my PCP labelled GAD (Generalized Anxiety Disorder). I was (again) put on anti-depressant, and it did help. The next winter I was diagnosed with severe occupational exhaustion and moderate depression. AFTER that, the next summer, I was dx with Sjögrens. Until then, at least for two years, I had been complaining about fatigue that was overwhelming, as well as brain fog.
Probably because of my history, they still think my fatigue is due to the depression. I'm saying, IF there is any depression left it's due to the fatique! Nobody listens to me there, they just keep wondering why I don't respond to the anti-depressants. Well, my new shrink (who I - to put it nicely - don't like a bit) kind of agreed and is sending me to a sleep study, so maybe that's a start.
My problem is, that they say often the neurological problems with Sjs come before other symptoms - so WHAT IF that was the case with my depressions and the GAD? Nobody answers that question to me. Would I be treated differently? Like maybe steroids instead of a suitcase-ful of antidepressants and therapy I don't want?
Also, my rheumy tells me to excercise. Says that it would be important also because of my fibromyalgia. Yeah, I believe it would. Just that I don't have the "spoons" for that, so swiping the stable isle and walking the grocery store mileage gets to serve as my excercise.
Anyway, I understand your frustration and confusion. First hand. I'm sad that I do and I'm sad that you too are in that situation. And I'm sad that ANYONE has to be in that situation :(
Sorry the feisty rant. Just that my life is a mess because of this very issue...
Cat you've gotten good advice here. Makes me crazy when doc's say it's all in your head like you are crazy.
For one, the stress if living with undiagnosed disease is very significant and fatiguing in and of itself. Now would they say to someone in the same boat who was eventually diagnosed with cancer it's all in your head? Not on your life. Second living with chronic illness takes a toll on the body, day and and day out. If someone had Parkinson's or diabetes and was fatigued would they say it's all in your head? I doubt it.
Not sure this doc is salvageable, but if you believe you can approach him in a way that won't shut him off you might take a book about SJS or article that speaks about fatigue and ask his thoughts about it. You might ask something like, is this article in The Moisture Seekers, published by the Sjogren's Foundation, inaccurate? If he continues to insist the fatigue is not part of the disease and is all in your head, I'd high tail it out of there and find a new doc.
MirkeshCat you are NOT nuts. Your doctor is. I am seronegative but have many symptoms of Sjogren's including dry eyes, dry mouth, chronic sinus infections with five sinus surgeries, very bad muscle and tendon pain with visible swelling, inflammation and redness that my rheumy finds every visit, horrible fatigue, and rashes. She has diagnosed me with a definite Sjogren's.
I have a good friend who is a physician. He even said that doctors coming out of medical school now in general do not listen to their patients, and are not skilled at diagnosing by listening to their patients. Instead they rely on laboratory tests alone. They are not good diagnosticians and they are very lousy doctors.
Do not doubt yourself and your symptoms and do not let this doctor make you feel bad.
I hope you can find another doctor who will listen to you.
It has taken me about 20 years since my pain, fatigue, and all of the other symptoms began to finally get a diagnosis and now it all makes sense.
I could go to a new, young rheumy tomorrow and based on my blood tests, he could tell me I do not have Sjogren's and this is all in my head.
I do have some other general blood tests that can be indicative of autoimmune disease, but my Sjogren's tests, ANA, CRP are negative.
Good luck. Trust yourself. Discount this doc just like he is discounting you!
Yes, you have to be your own best advocate, because you can't believe all doctors these days. I have even had the sleep study, and do have severe sleep apnea, and use a cpap, but I still have the extreme fatigue due to sjogren's and lupus.
susanep :)
You are not "nuts". You are not alone.
I have very similar symptoms and have been told many times it was psychological. I did the antidepressants and when they did not work referred me to a psychiatrist. He actually discharged me and said nothing was wrong mentally with me. Doctors still try to send me back.
Good Luck. I have not seen a rheumy yet but am looking forward to it. (Yes and No)
Rae
Hello folks!
Thank you all so very much for your understanding and your wonderfully encouraging replies! I was really starting to doubt myself after the visit to that new rheumy. Sad as it sounds, I may have to re-start my "quest" to find a good rheumy again.
Thanks to you all again!
Greetings from Germany!
MirkeshCat,
Being in a rural location is indeed difficult when trying to find a specialist.
In fact even in cities sometimes finding a 'good match' can be difficult as well.
Your Rheum has done tests, given you a DX and started you on Plaqueninel.
Plaquinel takes time to work ...up to 6month for full effects. However, often patients feel relief earlier, so hopefully building up to the 6 months does get better.
Having Graves will involves management by a Endocrinologist. The symptoms overlap those of Sjogrens...so muddy waters. http://www.mayoclinic.com/health/graves-disease/DS00181/DSECTION=symptoms
You posted that you gave your Dr. a number of symptoms and we do not know all that was said. He did take time to talk you.
Hopefully the fatigue will diminish with plaquinel.
However, if you look at posts there are lifestyle changes patients can make to help themselves and one of them is indeed exercise. But, it is not working out with weights necessarily...a simply 15-20 minute walk every day would give you 2.5 hours of some cardio...you can look up walking on the net. It also is a bit of "me" time...which is healthy.
Having a series of symptom on a daily basis does have to affect us emotionally ---> psychologically ---> depression.
There are studies of lowered serotonin in Sjogrens and AI patients. Exercise raises serotonin.
So your Rhuem was not totally off the mark.
Sometimes when patients hear the words depression and psychological, they think of those term as a defect in themselves (personality), rather than a biological symptom of their chronic illness. And both can also be symptoms of SJS / Graves combo or result of one.
Hope this helps you.
I would think about what other things your Dr. discussed, mentioned during the visit and of course you need to keep him while you do search for another, should you chose to do so.
Following-up on Graves will be important.
I vividly remember when I was searching for a diagnosis hearing things from the docs such as, "What do you want me to do?" Whatever you have is beyond my expertise (at least he was honest), etc. but the one that really got me was "You need to go for counseling." I said to her, "No, I don't need counseling, I need a diagnosis." Her response was, "Then you need counseling to deal with the fact you don't have a diagnosis."
What helped me the most was my daughter's encouragement. She said, "Mom, we can tell something is wrong. Don't give up.
Listen to your body and keep searching for someone who will join you in the search.
Yes, what encouraged me to continue my quest to find out what was wrong with me was the validation by friends a family members who kept telling me I needed to see another doctor and find out what was wrong because something WAS wrong when I tried to keep acting like I was just fine but I couldn't walk from the pain or I had to sleep a lot or I kept getting sinus infections, eyes crusted shut in morning and watering during day, face kept getting red, etc.
I hope the Plaquenil helps. I am still on 400 mg, but it doesn't seem to be working as well. Now starting on methotrexate.
Good luck.
Believe in yourself.
Weird as it sounds, eyes watering can also be a sign of dry eye. Don't let anyone say that therefore you don't have Sjogren's.
Maybe someone on here could suggest a good rheumy where you are.
Sharon
Hi there!
Well - here is an update to all of that. I just got my hands on my new rheumy?s report written to general physician.
It basically says: Yes, there is no doubt that the patient (me!) has Sjogrens Syndrome. All tests hint to that (SS/A, SS/B, RF, ANA). Yet my rheumy also states that all the various symptoms discribed by the patient can hardly be blamed on Sjogrens (extreme fatigue, sensivity to sunlight and heat, joint pain...). He goes on to say that in his opinion the patient is really suffering from a somatization disorder as there are no signs of an active inflammatory-rheumatic disease.
I am very angry and stunned. Yes, my CRP is always negative, yet my blood sedimentation rate, monozytes, gamma-globulines and alpha2-globulines are regularily highly increased. How can that "specialist", that rheumy, make such a statement? It all gave my general physician more "ammo" for his theories and he immediately suggested again that I put myself together and start to do excercising daily.
What do you think of that?
QuoteYes, there is no doubt that the patient (me!) has Sjogrens Syndrome. All tests hint to that (SS/A, SS/B, RF, ANA). Yet my rheumy also states that all the various symptoms discribed by the patient can hardly be blamed on Sjogrens (extreme fatigue, sensivity to sunlight and heat, joint pain...). He goes on to say that in his opinion the patient is really suffering from a somatization disorder as there are no signs of an active inflammatory-rheumatic disease.
I would be as confused AND ticked at the contradictions in rheumy's report. Does your wife accompany you to your appts? As an advocate, I mean.
My previous PCP, who initially referred me to rheumy to be assessed for Sjogrens AND possibly scleroderma, didn't even LOOK at me from her computer screen until I brought my then SO to appt. Then she actually EXAMINED me for the first time in three years.
I am seronegative for Sjogrens, tho my rheumy is treating me for Sjogrens-Primary. Even my sed rate was zero initially, but my inflammation was quite visible and there was no doubt of the Sicca symptoms in my eyes, mouth, nose and "bum". Plus I already had one diagnosed AI (Hashi's) and endo had suspected for a couple of years another AI lurking in the shadows so to speak.
I would suggest bringing an advocate to future appts for a while, such as your wife. And... perhaps it would also be helpful to print out some info about the manifestations of Sjogrens for your next appt with PCP.
And consider changing PCP/GP
Hi MirkeshCat,
I'm sorry you're going through all of this, and it is pretty much 'par for the course' as most of us have experienced it.
I wish that everything were clearer and easier, and somehow I"m not getting my way on anything.
1 a) Profound fatigue b) Body Pain c) Depression are the universal symptoms of Immune Mediated Conditions.
2. Medical Science does not know very much about our Immune System, and can only use the tests they have to test the conditions they associate with those tests.
3. The General Public and most doctors, including most Rheumatologists do NOT know the first two points.
4. I have had Immune Mediated conditions all of my life, accelerating rapidly in the past 15 years. Only at age 71 was the true unifying diagnosis made. Primary Immune Deficiency Disorder. My Immune system is so weak that it cannot DEFEND my body against infections AND in its confusion it ATTACKS my body instead.
5. I live in a highly medical family: my husband is a medical research Immunologist who did research and taught in a Medical School in Boston for 25 years. My son is a doctor. Six of my sisters-in-law are nurses. I have always sought out the best possible medical care, and I deal very professionally with medical professionals. And STILL my conditions have been dismissed as somatization! Yes, Mirkeshcat, I have been told to 'get over it' 'get more exercise' 'stop being so self-centered'.
6. I have seen therapists, psychologists and psychiatrists for years on end since age 30. That's 42 years (I'll be 72 in March). That has helped me enormously with my personal growth. It did not change my Immune system one single bit! It did not change my pain and the progress of deterioration. It did not create one iota of acceptance in my family for what I experience on a daily basis.
My current research Immunologist is working to understand Immune Mediated conditions. With understanding will come better tests and better treatment. And while we wait, we do our best to live with our conditions. And seek those medical professionals who are the best and brightest.
For many that means great amounts of time and money spent in the process.
Keep us posted Mirkeshcat on what is developing for you.
Hugs, Elaine
MirkeshCat - I have found it hard to explain to doctors and friends exactly how I feel with the fatigue. I think the only person who really gets it is my wife. It is extremely frustrating to think that someone who is supposed to be helping you is sitting in front of you doubting what you are telling them. If I were in your shoes, it would be awful hard to not wish this disease upon your new rheumy so he could see that it is indeed not in your head.
If you haven't had your testosterone tested lately, you might want to get that checked. Mine was low at 226. I'm also a 37 year old male. The testosterone level for a healthy male our age should be in the 600-800 range. Since I've started testosterone injections, my quality of life has improved dramatically. The fatigue has all but disappeared.
Good luck and hope you get to the bottom of it quick!
CAT.. I am fairly new..to this site and SS. I don't have Graves. I am 71 and can easily trace this syndrome in me to my late 40s. I understand what you are saying. You have lived in your skin and finally receiving an EXPLANATION as to why you have had various symptomotolgies is such a relief. It lets you know you DID feel and experience those unusual times and events...and they are NOT in your mind. As various people state on this board, no one in your family or circle of friends will understand, want to hear about your symptoms/diagnosis, or treat you with anything but boredom (and/or disbelief). Ignore them..and stay on the board where you can receive support.
I am going to digress a bit...but stay with me: I have a 72 year old cousin. She had polio as a toddler...her feet, ankles and Achilles tendons were affected. I will spare you her life details. She lived as much a normal life as I did or the next person...till about 20 years ago. Now she suffers Post Polio Syndrome. Her neuropathy advanced rapidly in her feet and ankles till she has no feeling in them at all. This has NOT stopped her--merely slowed her down. HERE IS THE KICKER and relation to where you are: there are no doctors who know post polio. Polio has not been taught in medical school in decades (unless it's the history of it) and NO ONE had a clue the virus would raise its head in later life. She takes each problem / symptom on on her own. She is thriving. Now then ....not all rheumatologists are interested in esoteric syndromes as they study. Your doctor may be the best in actually diagnosing...but not so much in listening to what is really bothering. It is extremely likely he just does not know.
The person who suggested sleep apnea is a great thought. My suggestion is to see a physical therapist. This could help you know if it is in your limbs or something internally causing the fatigue. In the last five years I have taken a nap when I complete a workday. I put it off to old age. The SS dx was the best news I could hear just why I was "sleepy" so often. I feel better just understanding. I never thought of being sleepy as being fatigue. I was being too hard on myself. Give yourself a break and allow your body to replenish itself. Do not worry about why you are tired right now. Today walk a block once. Tomorrow, twice, etc. Don't feel weak because that is all you do. Listen to your body. Continue to search for a more knowledgeable Rheumatologist...or hope your present one will take up the banner and read up and learn to treat you and other SS patients more thoroughly. So many people are geographically challenged for excellent care.
Don't make an appt. with a psychiatrist yet ...ha, ha. Try pilates and/or yoga to help you keep up stretching and strengthening. You will run again...you don't want to be complete mush when you start again. You do not need to do cardio @ 3 miles per day while you work full time unless you have a heart condition you didn't mention. Even if you do, work up to a mile...then two then three.
It's frustrating getting to where you are now...and you are still in shock and a bit confused due to lack of physician's direction for you. Find a group in your area.
Good luck.
Has your thyroid been checked. Hashimoto disease sometimes makes you tired and is common with other AI issues.
Quote from: sewandsew on January 31, 2014, 12:38:27 PM
Has your thyroid been checked. Hashimoto disease sometimes makes you tired and is common with other AI issues.
Yes, it?s been checked and they found out I?ve got Graves. But my TSH levels are normal at this time (around 0.30).
Guys, I thank you all so much for your very supportive answers and I appriciate them very much. It is good to know that there are people like you out there, even if on the other side of the big pond :D
TSH Levels of 0.3 is the low end of normal I believe so I hope they keep monitoring you. As far as I know - in the US - TSH normal is 0.3 to 3 (In the UK its 0.5 to 5 and quite honestly 5 is way too high!
I feel best when my TSH is suppressed - like round about 0.07 but I know at that level it freaks my doctor out. I think she will be OK if its about the 0.1 mark. (Ongoing blood tests to try and get it stabilized)
Take care - Scottie :)
MirkeshCat
Since lab reference ranges can be different per lab AND per country...it's helpful if you are comfortable with it to share the lab reference range on the respective test(s) as well as the results.
Here's an example of my TSH results amd you'l;l see what I mean about variances in lab reference ranges:
Name TSH
Standard Range 0.450 - 4.500 uIU/mL (I am in US)
5/10/13 4.450
7/2/13 12.710
9/24/13 8.390
12/5/13 4.940
1/22/14 3.500
TSH is only part of the picture. Ironically, where you see above my TSH rocketed to triple the high normal - my FT4 and T3 values were within normal limits (low end normal and dropping). Yet I was symptomatic throughout that period. So Endo upped my T3 replacement compound. (Jul-Sep). Sep 2013 was ordered by rheumy AND endo to go gluten-free. Finally in Dec slightly high TSH and per my request Endo agreed change nothing until we saw values in Jan 2014. That is the FIRST time since surgery in 2008 that finally we have stabilized my thyroid levels to purring like a kitten.
ALL thyroid levels stabilized FINALLY. But as previously stated, I would encourage you to have a consult with an endocrinoloist. Especially as you have a dx of Graves. Thyroid problems can cause all manner of problems. Thyroid is part of the endocrine system. And a good endo will have working knowledge of AI's. It was actually my Endo who suggested 3 years ago that I likely had another AI under the radar.
Hugs
Amanda
I think most of us have gone through this crazy idea that fatigue is not part of Sjogren's. Here's a good survey article on the topic http://www.ncbi.nlm.nih.gov/pubmed/20147445 (http://www.ncbi.nlm.nih.gov/pubmed/20147445).
Most rheumatologists remember the "dry eye/ dry mouth" that they learned in school, and treat those symptoms. Only a handful have enough experience to go beyond this. Since you are in a rural area, and may have limited choices on rheumies, you may want to find some articles and share them with your current rheumy, and see how he responds to the new information.
Personally, my first rheumy was determined that if I got into a good exercise program, my fatigue would disappear. She was a very well trained rheumy, and was an athlete herself, so she had a lot of faith in exercise. I tried and tried, but ended up worse and worse after exercise. She wouldn't believe me, and told me that I was hysterical.
I ended up seeing a different rheumy, who believed me, came up with a very carefully supervised physical therapy program, with basically the same results. BUT, she believed me. Throughout all of this, my inflammation number are in normal ranges. I have been assessed for clinical Sjogren's and do have it based on SS/B and lip biopsy, etc.
Some of the possible approaches to treating fatigue include: assess for additional issues (as have been shared by others). Relaxation techniques, gentle exercise (like tai chi), immunosuppression (drugs like prednisone, mexothrate and Cellcept dampen the immune response), anti-inflammatories. It's a long journey to find out what the best mix for your is.
Best of luck on finding the right people.
I think most of the people on this board at some stage have been told to have counseling or to exercise more.
My daughter (diagnosed at 17) was once told she needs to exercise for 10hrs a week. We were both absolutely flabbergasted at that statement.
As the outcome of your Rheumatologist visit wasn't so good, it might be worth seeking a second opinion from an Immunologist.
Good luck, I hope you get answers and feel better soon.
In the past, on the rare occasions when I was not out right ignored, I have been told by my PCP that my problems were all due to getting older and to weighing too much. If I exercised more, lost weight, (and got younger), my problems would go away. So I know the feeling of being told that basically it is all in your head and there is nothing wrong with you and, in addition, it is your fault that you don't feel good. Well, I fired those doctors and got me some new ones. Now I have a gem for a Rheumatologist.
My Rheumatologist always asks me about fatigue, sensitivity to sunlight and heat, skin issues, joint pain, dryness, and many other symptoms that she knows are connected to Sjogren's. When I tell her the symptoms that I have, she always says they are connected to Sjogren's.
My hand and wrist x-rays show severe osteoarthritis, and no erosive changes, but my Rheumatologist, when she feels my joints on every visit, always says that she thinks that there is some inflammation there as well.
Most of my lab work is normal. All I have is the positive ANA and the positive SS-A and the low Vit D. The rest of my blood tests come back within normal limits every 3 months when she checks them. Yet, even without the blood inflammation markers being elevated, she feels there is inflammation.
Bringing an advocate along is a good idea. It is sad, but some doctors need to know there is a witness. Or, if possible, try to find a better Rheumatologist.
Best of luck.
Hi there, it?s me again from Germany with a little update.
I decided to write a letter to my ex-rheumy who basically said I HAVE SJS but actually I am also a case of somatization disorder. The letter is in German and pretty long, so it does not make sense to post it here. I just told him in the letter about all the symptoms that can occur with SJS and attached a lot of sources from books and websites to educate him. At the end of the letter I informed him that I would never return to his office again. I also sent a copy of the letter to both my general physician and my intern. As you can imagine I never got a response from the rheumy. My intern told me that the letter was very good and she liked it and that every patient had the right to write such a letter.
Despite the ex-rheumy telling me that I was basically all psycho I went to see a pneumologist near my hometown because I have severe air hunger from time to time. He was so friendly and kind and HE completely understood the symptoms of SJS that I suffered from. "Of course, fatigue is so common in SJS patients!", is what he said. Ok, to make this short, he ran some tests and then came the horrific diagnosis - I may be in the early stages of lung fibrosis. He will have to run several more tests like a biopsy or CT scan. But if I really have lung fibrosis, can you imagine how much anger I feel for my ex-rheumy? That nerd declares me a psycho when in fact I might have a potentially deadly fibrosis!
Other than that I also found a new rheumy in Munich, Germany. That is rather far away from where I live but I would do anything to find a good doctor. My appointment there will be next Wednesday. I will let you guys know what she said.
Thank you all again for your kind replies! You really gave me strength!
Mirkesh, from Bavaria
QuoteI have severe air hunger from time to time. He was so friendly and kind and HE completely understood the symptoms of SJS that I suffered from. "Of course, fatigue is so common in SJS patients!", is what he said. Ok, to make this short, he ran some tests and then came the horrific diagnosis - I may be in the early stages of lung fibrosis. He will have to run several more tests like a biopsy or CT scan. But if I really have lung fibrosis, can you imagine how much anger I feel for my ex-rheumy? That nerd declares me a psycho when in fact I might have a potentially deadly fibrosis!
Way to go, Cat!! :) The lung issues alone can contribute to fatigue. Yes, I can imagine how angry you are at that rheumy. Unfortunately, part of our respective journeys involves advocating for ourselves, and encountering a few frogs along the way. So when you think about that rheumy, visualize him as a toad. ;), as he sure wasn't a prince from your description of your experience.
I would add that one of the challenges is that medicine has become so specialty focused that unfortunately it sometimes involves several specialties to get to the root of all of our medical issues. Thankfully you did consult with a pulmonologist. That is outside the realm of rheumatology unfortunately, although rheumy (in my view) SHOULD have at a minimum referred you to endocrinologist for the Graves. Graves can also cause significant fatigue. And NO, it is not imaginary fatigue at all. Been there done that.
If it does turn out to be lung fibrosis, thankfully it sounds like your pulmo caught it at the early stage.
Hugs
Amanda
Oh dear Mirkesh Cat,
You have validation of your conditions and experiences! Even a diagnosis of something unexpected and possibly scary validates you, your perceptions, your experiences, and mostly your patience, persistence and acceptance that you had to keep seeking medical advice until you were satisfied! Bravo, Mirkesh Cat!
I can tell you that in 2011 my Duke Rheumatologist included a chest x-ray in her routine screening of my health when I was a new patient for her. SHE KNEW TO LOOK AT MY LUNGS. I didn't express a single concern or symptom about my lungs. But she ordered that test.
I suggest that you write another letter to your ex-rheumy, with this new diagnosis sent, not in anger, but in an effort to show him that he missed a major condition and diagnosis. Include any written diagnosis from your new doctor. You will do this to help yourself let go of resentment against that ex-rheumy. He may or may not learn something, but you can begin to close the door of remembering how wrong, dismissive and cruel he was to you.
For living with chronic conditions, as we do, our physical and emotional strength and stability must be reinforced as much as possible. You have reinforced both with your persistence in seeking help. You can now help yourself by closing the door on that ex-rheumy and his mistakes. That will help you emotionally, and that will also help you physically in the long run.
Thank you so much for keeping us up-to-date on your experiences. It isn't at all nice to hear that you are in the early stage of lung fibrosis. The term 'early stage' is hopeful. Now you can do what you need to care for your health. And now you know what you have many of the symptoms you experience. Knowledge is power.
Hugs, Elaine
What Elaine said!! :)
I am finding the more I go to different doctors the more I find they are getting paid to do nothing, especially these so called specialist! They are not caring for and treating patients. They are passing difficult cases on to others and it keeps going and going and these doctors are giving the ones that actually do care and spend time researching a disease and helping people a bad name. These doctors tell you you are stressed and thats the problem so they can send you out the door sicker than ever with no answers. I wish for all those specific doctors to come down with this particular disease so they will understand. Yes I am angry. I found only one good doctor and I guess I was lucky it only took 6 months to find him. but had I had a doctor that cared in the beginning I may be better by now. Just had to vent. I hope you get better!
Kimberly
Mirkesh
I am so glad that you kept trying til you got some answers! It can be very hard to do. We all learn to trust doctors when we are children, and if we are unlucky enough to get very sick, we have to unlearn it.
I hope that your treatment goes well.
Again, thank you all so much for your interest and your hearty replies! I really appreciate that!
My pneumologist has suggested that I will have to see a (new!) rheumy for obvious reasons, an urologist for my bladder problems (interstitial cystitis?), a haematologist/oncologist to see about lymphoma or blood changes and an endocrinologist because of the Graves. After I have all the results/reports I will update you guys, if you are interested.
Mirkesh :-*
Quote from: MirkeshCat on February 22, 2014, 11:08:55 PM
Again, thank you all so much for your interest and your hearty replies! I really appreciate that!
My pneumologist has suggested that I will have to see a (new!) rheumy for obvious reasons, an urologist for my bladder problems (interstitial cystitis?), a haematologist/oncologist to see about lymphoma or blood changes and an endocrinologist because of the Graves. After I have all the results/reports I will update you guys, if you are interested.
Mirkesh :-*
MirkeshCat,
Be REALLY PROUD of yourself!
Early in this journey I had a general practitioner "decide" that my symptom were due to depression. I told that Dr. he was "depressing"
With the help of a therapist I did push and get answers and better Drs.
The therapist would say to me " Only You know your body". Fortunately for me the therapist has a strong medical education, she became my 'rock'.
Got a Dx from a Rheum, dumped the GP, kept the therapist to help me navigate life with chronic illness. Still no classical depression.. after all these twists in the road.
Overwhelmed, exasperated at times.
But, we muddle through.
Sounds that you have a good team now, and I wish you the best.
With your experience with the 1st Rheum so fresh in your journey, if it takes up "head space".
I would take the advice of Carolina and send the information to that Dr. give him a wake up.. then let it go, as you need your energy for yourself and the new Drs.
Turn a bad experience into hopefully something good, in that the Dr. may be more diligent with the next patient.
Please let us know how you are doing, when you know more. And always feel free to just come and talk.