Meltdown......anybody had one?

General
1

…because I really feel like that is where I am headed. I realize this isn’t really a “topic”, but I needed a place to vent for a moment. I have had several different symptoms pop up since December, and I have been to 3 specialists and my rheumatologist and really haven’t gotten very much help. My rheumatologist was the worst, she basically told me that I needed to learn to live with it and see you in six months. WOW! I wanted to slap her, but I held my composure.

I have lived with a cough for nine months now. My ENT believes it is laryngeal neuralgia. I’ve been a nurse for 13 years, and I’ve had to give up being a hands on nurse to be a telephonic nurse as a disease manager. And I can’t even seem to manage my own disease. The newest symptoms were as follows: severe pain in my ribs and upper chest (which I assumed was from the constant cough), trouble swallowing, weakness in my lower legs to where I couldn’t get up after squatting down, weakness in my arms, extreme fatigue, ability to do any activity or exercise was almost impossible (I lasted about 15 minutes before feeling pain and/or short of breath), numbness and tingling in my hands and feet, loss of appetite, weight loss, and severe constipation and nausea. Now doesn’t that sound like quality of life??? NO!

I just returned from going to see a Rheumo at Duke University Medical Center, which is four hours from where I live. She was very thorough. What I understood from her is that if your inflammatory markers are normal then you should not be experiencing any symptoms. So, I’m waiting on the lab results from those inflammatory markers along with the other 8 vials of blood they took.

I’ve lost friends and family because I “look fine”, and they don’t believe anything is wrong. I’m tired, and sick of physicians who don’t seem to take the time or concern with patients. As a healthcare professional, I’m disgusted. As a human being with Sjogrens disease, I’m discouraged and depressed. Sorry for it being so long.

2

Hi Karyn,

Yes, I do think it's a topic, and this is exactly the place to put it. I don't think there's a person out there that suffers from a chronic, systemic illness that has not gone through a meltdown. As common in occurrence as this disease is, so little is known about it, and so little is being done as far as treatment and cure, since being discovered in 1933.

Before I jump into this, please understand that I am not a medical professional, your knowledge and understanding of disease will always exceed mine, but as a friend and fellow sufferer, lets take a look at it.

From looking at your profile, I see no other disease mentioned such as a type of arthritis, I see no accidents/injury mentioned, so I have to assume that all of your struggles are coming from Sjogren's, and a neuralgia of the larynx (little to no info on that to be found).

Yes, coughing can certainly cause rib pain, but so can costochondritis, I have had this to the point that my husband nearly carried me to the Doctor, I could barely lift a tea cup or a dinner plate. He gave me a shot of Demerol in the sternum area, and it knocked it out of me, broke the pain cycle, though the problem arises again and again, most often aggravated by cough, stress, or lets just blame it on the PsA and Sjogren's?

My hands are numb, mostly the fingers on the outside of my hand, but can that be neuropathy caused from DDD, with collapsed discs through out my cervical spine, spinal stenosis, scoliosis, due to 3 rear end car accidents, or PsA and SS?

I have so many more factors than you do, but we suffer so closely. Have you had any type of x-rays done, and what was indicated?

This info seems to put magnesium deficiency down as the root cause of inflammation? That's a big surprise to me!

http://tuberose.com/Inflammation_Damage_&_Repair.html

I know Karyn, I have lost friends and family because of illness too, but I'm sure on some level, I'm at fault for a least a little of that, if not feeling well enough to interact is a fault!

To me, the more we seem to uncover about this disease, and all autoimmune, the less I understand, especially when we get into the genetics of it, I'm really lost. The info that I found yesterday that stated that different genes are involved in different races of people with Sjogren's is just dumbfounding, and though a link, I don't understand it!

Being injured and/or ill is the biggest challenge we face, next to trying to get well. I understand exactly how frustrated and angry you are. I'm not sure that I've solved anything for you, or even made a lot of sense, but I do care about you and hope that you can get some solid answers, and substantial relief.

Sending you some love and understanding,

SK

3

Have you seen a neurologist about weakness/tingling?

Good Luck

4

Hi Karyn -
I’m so sorry that you are having so many symptoms! And also that we as patients with autoimmune seem to be so misunderstood by doctors - especially the Rheumies who should know the most. I have the cough issue, too - sometimes it gets to the point that I start gagging (very embarrassing in public) - I think it’s a dry throat problem, though sometimes it seems to be triggered by specific things (like when I’m chopping hot peppers). And I, too, have experienced people just thinking I’m a complainer or lazy because I can look perfectly fine, but feel like crap. We all understand these things on this site and are all here to support you anytime you need to rant!

Given the severity of your symptoms - have you had a brain scan to rule out MS? Fibromyalgia might also be a factor. SS can definitely cause the neuropathy - I have it in my face and lips, but in the arms and legs it can cause weakness, too. At least these are things to discuss with your Dr. Hang in there - we are here to support you when you need to fall in a soft spot for a bit!
Linda

5

Karyn, I am so sorry for your disappointment and suffering. SK is right, all of us have breakdowns. We're human and we are constantly under attack from our own bodies! It really stinks that anyone has to suffer and to top it off lose friends and family of their own ignorance! Compassion and empathy have slipped away from society, partly because everything moves so fast (well, not us!) We all need to keep re-educating family, friends, co-workers and the medical field until they get it! Hope you have less pain, less frustration and feel supported and loved this Easter season, Michelle

6


SK said:

Hi Karyn,

Yes, I do think it's a topic, and this is exactly the place to put it. I don't think there's a person out there that suffers from a chronic, systemic illness that has not gone through a meltdown. As common in occurrence as this disease is, so little is known about it, and so little is being done as far as treatment and cure, since being discovered in 1933.

Before I jump into this, please understand that I am not a medical professional, your knowledge and understanding of disease will always exceed mine, but as a friend and fellow sufferer, lets take a look at it.

From looking at your profile, I see no other disease mentioned such as a type of arthritis, I see no accidents/injury mentioned, so I have to assume that all of your struggles are coming from Sjogren's, and a neuralgia of the larynx (little to no info on that to be found).

Yes, coughing can certainly cause rib pain, but so can costochondritis, I have had this to the point that my husband nearly carried me to the Doctor, I could barely lift a tea cup or a dinner plate. He gave me a shot of Demerol in the sternum area, and it knocked it out of me, broke the pain cycle, though the problem arises again and again, most often aggravated by cough, stress, or lets just blame it on the PsA and Sjogren's?

My hands are numb, mostly the fingers on the outside of my hand, but can that be neuropathy caused from DDD, with collapsed discs through out my cervical spine, spinal stenosis, scoliosis, due to 3 rear end car accidents, or PsA and SS?

I have so many more factors than you do, but we suffer so closely. Have you had any type of x-rays done, and what was indicated?

This info seems to put magnesium deficiency down as the root cause of inflammation? That's a big surprise to me!

http://tuberose.com/Inflammation_Damage_&_Repair.html

I know Karyn, I have lost friends and family because of illness too, but I'm sure on some level, I'm at fault for a least a little of that, if not feeling well enough to interact is a fault!

To me, the more we seem to uncover about this disease, and all autoimmune, the less I understand, especially when we get into the genetics of it, I'm really lost. The info that I found yesterday that stated that different genes are involved in different races of people with Sjogren's is just dumbfounding, and though a link, I don't understand it!

Being injured and/or ill is the biggest challenge we face, next to trying to get well. I understand exactly how frustrated and angry you are. I'm not sure that I've solved anything for you, or even made a lot of sense, but I do care about you and hope that you can get some solid answers, and substantial relief.

Sending you some love and understanding,

SK

7

Hi Karyn, I've had break downs. I almost had one last week. I was on Prednisone for Crohns disease, and went off, and it put me in a full blown Fibromyalgia attack. I was in so much pain I barely got out of bed. I was ready to just "quit" for awhile. But I made it through last week (remarkable, though it is). My Rheumy put me on low dose Prednisone for another month. I'm scared to go off it, because I know I'll be in another Fibro attack. I don't want Cushing's disease.

I totally understand about your Rheumy! I had the same thing you did!! I swear he was thinking "big deal!" But it IS a big deal to us! They don't have SS, they don't know the pain we go through. When I'm feeling mean, I wish they had what I have, just so they know what I'm going through. Then I rethink it, and realize that I don't want anyone to go through what I'm going through.

Just keeping letting off steam, and rant away. We all are there, or have been there. We understand, hun. *Hugs*

Stacie

8

Thanks to all of you for your kind replies! So a little bit more of my history that I should have divulged…I started off having Hashimoto’s, and I had a total thyroidectomy. Then in the same year I was diagnosed with Fibromyalgia and Sjogrens. I have seen a Neurologist which did not prove to be helpful. I know that one of the many labs drawn yesterday were my magnesium and potassium levels. I guess being part of the healthcare profession, it makes me particularly angry that we struggle so much. Love and hugs to all of you!

9

I understand completely, hon. We are having an awful day here because our water tank blew, but I feel I'm in that same place. So much is going on here - losing so many things including our home because of illness. People have no idea. I just wanted to let you know that you are heard. My new rheumy is as awful as yours. I didn't even go back for the followup because all he wants to do is to recognize and treat my fibro with Lyrica, and I can't tolerate that drug.

I think it's just so important we can be a support for each other as we understand how devastating this disease is.

Take care of yourself! *hugs* Jane

10

Oh Karen, I am so so sorry you had a doctor treat you like that. It’s unprofessional and very detrimental to you over all wellbeing. Everyone is correct this is a place that you can feel comfortable ranting, having a meltdown or whatever else you need to do. I don’t think there’s anyone here that can’t related to what you’re going through. I have alot of the same symptoms you speak of. It has been an uphill battle every step of the way just to get answers or just feel validated. I had a rheumatologist tell me "you have fibromyalgia, what more do you want? " in tears I told him nothing but answers and relief. I never saw him again. Thankfully the guy that I see now is very up to speed with sjogrens and other autoimmune diseases. I am not a doctor or any kind of health care provider but I can tell you from personal experience that the inflammation markers are not always elevated. My dr. told me that asmall percentage of his patients have blood tests come back “within normal range” please don’t get discouraged if they are not elevated you still have the bloody symptoms. Again know that you are cared about here and if I can do anything to help you please let me know.

11

Dear Kayrn,

You are in good company here! I believe we have all had most, if not all, of the scary symtoms you've shared with us; I have had the same experiences.

The cough is a constant with me, especially if it is windy and dry out and at night even worse; what is probably worse than the disease is the "you look fine" or "you look great" along with the skeptical look on the faces of even your loved ones. I was diagnosed almost 3 and half years ago and my husband still "doesn't get it", I have heard couples getting divorced over this!? Anyway, I have to take a little something at night for the anxiety (that turns to depression if I don't) of having Sjogren's, if I think, even for a minute, about how it has changed how I see myself I break down and cry and I wonder how many more "flare-ups" I can handle and how many more will come!?! So I don't think, I just "do" anything and everything I need to fight this disease!! I will not "just learn to live with it", like both your Rheumie and mine suggested! As I am writing this to you I am drinking my Mean Green Drink, which I have adjusted even since I posted my receipe a few weeks ago; it gives me energy, helps with aches and pain, both in joints and muscles and I have added Alive!, which is Calcium with Vitamin D3, all veggie based and also a sublingual B12. I know, and have had those mornings when I feel that my legs will not hold me, but I get up put on my walking shoes (weakness, pain, and all) and take the dogs for a 30 minute walk, when I get back I have my Mean Green Drink and I reassess how I feel and by then I am feeling much better, then I have a gluten free breakfast and the world is fine again and move on. I am on the trail of getting us more information on Gene Therapy, which is a game changer!! Hang in girlfriend!

Goddess

12

Been there too. It's so horrible. But remember this too shall pass. I think that it's so sad that we have to go around trying to prove to this one and that one that we aren't faking. I dealt with that w/ my fibro. I stopped trying to convince people. Once I did this AND learned to mourn the "old me" I really started getting better. The only one that needs to know the truth are you and God. Just do your best and let God do the rest. I've had many melt-downs. That's only b/c I was keeping everything inside. Trying not to "bother" others and do everything for and by myself. even though I was making myself sicker. Life is poetry in motion. People that judge should be careful b/c it'll come back on them or someone that they really love. My SW used to always laugh b/c I would always say..." All I'm asking for is to be very sick in peace." LOL

I said a prayer for you already. God Bless you Karyn. This too shall pass. Learn to treat yourself the way that you're always treating others...even when you're not feeling well.<3

13

See if you can see a pulmonologist. I had a cough for "9 months" and it turned out to be an "brochiectasis" (interstitial lung disease caused by the Sjogren's that's similar to juvinile cystic fibrosis). Not that that's what you have. But SICCA can cause chronic lung diseases.

When the brochiectasis started, I had osteoporosis. All my ribs have been fractured 1-3 times. Was treated with Reclast for the Osteo which has allowed me to cough and clear my chest without hurting the ribs. I take nebulizer treatments as well.

Don't like this sentence: "if your inflammatory markers are normal then you should not be experiencing any symptoms." NOT! That's the kind of baditude that keeps us from being diagnosed earlier.

Turn over every stone in your care. We are here for the support that we all need. You got to hold on!

14

I think you have something there, confused...

Sometimes I think we get sick from trying to run around and do everything, be everything, please everyone. With the amount of time and work I put into the Fibromyalgia group, all the profiles, discussions, and blogs, I read, the thousands of people I came to know, I started to consider Fibromyalgia the 'over doers disease' But really the suffering is not that much different from autoimmune, and I think a lot of us with autoimmune have Fibro, and even if undiagnosed, or underdiagnosed, I believe many with Fibro have autoimmune. It is all a stress response to 'too much'!

Acceptance is surely a process, and morning the old self is certainly a part of that. As hard on us as others can be, we can get down on ourselves sometimes too. We get upset at ourself because we just cannot make ourselves push through and get better. It's what we have always done, but our bodies finally stopped us from it.

15

I also think the holdays are hard on us. Work and interaction are required, if we commit to having a holiday or taking part of another's meal, we feel we need to be reliable, capable and charming! That's a big order!

16

Karyn
Vent away. Prior responses show that you really not alone. Costochondritis is certainly one possible explanation. I get it on a chronic basis. It hurts me to breatheand I feel like someone’s constantly stabbing me.

I don’t believe that it is a true statement that if your inflammatory markers you should be symptom free. I guarantee many other Sjogren’s sufferers will disagree. I suggest finding another rheum for another opinion. Going to Duke doesn’t guarantee the right answers.

Before I forget you mentioned chronic coughing. I have chronic asthma and I thought that’s why I coughed all the time. None of my medication seem to work. I went to see an ENT and everything looked fine. He suggested that maybe dryness that was causing the chronic cough and I didn’t believe him. I tried pilocarpine and believe it or not it made a difference. Just a thought.

Let us know how you make out.

17

http://en.wikipedia.org/wiki/Pilocarpine

18

Amen to that SK!!

SK said:

I think you have something there, confused...

Sometimes I think we get sick from trying to run around and do everything, be everything, please everyone. With the amount of time and work I put into the Fibromyalgia group, all the profiles, discussions, and blogs, I read, the thousands of people I came to know, I started to consider Fibromyalgia the 'over doers disease' But really the suffering is not that much different from autoimmune, and I think a lot of us with autoimmune have Fibro, and even if undiagnosed, or underdiagnosed, I believe many with Fibro have autoimmune. It is all a stress response to 'too much'!

Acceptance is surely a process, and morning the old self is certainly a part of that. As hard on us as others can be, we can get down on ourselves sometimes too. We get upset at ourself because we just cannot make ourselves push through and get better. It's what we have always done, but our bodies finally stopped us from it.

19

I find that not only the "need to be reliable, capable, and charming", but I can't eat all the food so I look like one of those people who I used to wonder about, saying I can't eat this and I can't eat that, being fussy or worse a snob!

SK said:

I also think the holdays are hard on us. Work and interaction are required, if we commit to having a holiday or taking part of another's meal, we feel we need to be reliable, capable and charming! That's a big order!

20

Oh yes, and then there's that! Hope you can still have a good holiday, Goddess!