Hello, I've been lurking here reading many helpful posts here, I believe your insights will help me.
I tried to post a short story but it got very long :) so I'll try again--
I was diagnosed with Sjogrens and raynauds in my early twenties (I'm 48) and I led a pretty normal, active lifestyle without severe problems. I only had to take thyroid pills (for low thyroid) and plendil for raynauds. But my blood work always said: misconnective tissue disease, Lupus, CREST syndrome, scleroderma, or Sjogrens. I saw one rheumy for a long time and she diagnosed me all of these but my last diagnose was Sjogrens.
But about 3 years ago, my eyes got very dry and I started to get chalazions. I went through many stressful events (deaths in family, career changes, moving etc.) I stopped working out and took naps a lot -- I thought I was out of shape and being lazy.
Early this year, I got put on Oracea (docxycycline) for my eyes by my eye doc and plaquinil and Vitamin D by a new reumy. So I was taking synthroid, plendil, vitamin D, plaquinil and generic sudafed and during this time, I got dizzy, lost appetite and got extremely weak. So my rheumy stopped hydroxychloroquine, and then plendil. My dizziness seemed to improve however very slowly. I stopped taking sudafed and even stopped drinking wine.
It's been about 6 months and the dizziness and weakness are still there although not as bad. Well, I had to quit my job...and not working may be helping. I'm wondering if Oracea is causing the dizziness too. I saw another rheumy for a second opinion and he wanted to do a lip biopsy. I feel like so many things could be causing this, I don't know how I should approach my current symptoms:
I've been depressed. Depression could be the cause. Should I go see a psycho therapist?
Do I need to do a lip biopsy? If it is negative, does it mean I don't have Sjogrens??? I should revisit my Rheumy again on this.
I'm going through perimenopause and this could be the cause. Should I pursue treatments here?
Should I go see my general doctor and start with her? Or, should I see a neurologist? Can I request an MRI?
Or all of the above? Or, maybe since I took so many meds all at once, I just got bad side effects?
I just want to feel normal again soon... or well enough to function..
I just learned that dizziness, weakness and fatigue can all be symptoms of pulmonary problems as well - and lung problems are common with Sjogren's. Isn't doxycycline an antibiotic? You take it every day?
I think seeing a psychiatrist is a good idea if you are experiencing any symtpoms of depression and/or anxiety - it seems that both are common with chronic illnesses. As you can see in my list of meds, I'm on an anti-depressant and an anti-anxiety med and they've both helped tremendously with my depression and anxiety.
I'm sorry I don't have any advice on your other questions, but I know what you mean by wanting to feel normal again. I think we all do.
I'm sure someone here will be able to offer you more advice - good luck and welcome to the board!
Hi Charlie :)
Welcome to Sjogren's world.
Has your dizziness been checked out by a neurologist or an ENT specialist? It is possible to have autoimmune inner ear disease and that can cause dizziness as can some neurological stuff. I'm not a medic but I have a friend with dizziness problems and it stems from her inner ear.
I hope you find the site useful. Take care - Scottie :)
I had terrible dizziness -- what I called the carsick-hangover-flu -- constantly until I was on Plaquenil (hydroxychloriquine) for at least six months. I thought I was dying. Really.
If taking you off the hydroxy didn't help your dizziness, I wonder why the rheumy didn't place you back on it?
I would start there, myself. But that's because I think hydroxy is a MIRACLE!!! :D
But I'm not a medical person, just a fellow sufferer.
Thank you for posting your history and welcome to the forum Charlie. Depression is nothing to play with. It would be good to see a therapist and the therapist my be able to guide you through the maze of doctors. I have had problems with most of the typical medication so I use supplements and alternative therapies. Some of us have posted what we are taking in our signatures.
psychiatrist is more medicallly inclined - as in pills. A physchologist is more "mind" inclined.
It doesn't sound like you need more meds but a trained person to listen to you and help you sort things out. Choose a Physchologist or counselor, not the pill one! Also, please do not think you will be stuck going to see em all the time. Even a few sesssions can do a world of good.
My work will pay for 3-5 sessions per year in their insurance coverage. I went once for work stress (long story *boss!) and once to get a handle on things due to dr stressing me on what it might be in the 6yrs I was trying to get a firm diagnosis. It did help!
Also, I would not do the lip biopsy unless absolutely positively necessary. I was diagnosed positively with Sjogrens from an immunologist and never needed one.
Welcome to this site. Lots of great people here with a ton of information.
I am assuming that you are taking a maintenance dose of the doxycycline every day. Just to let you know that the doxy can cause some dizziness as part of its central nervous system side effect. Most of the antibiotics do but some are worse than others.
Also, the autoimmune issues can be causing dizziness also. You need to see a neurologist to get things sorted out and to have one on your medical team. The central nervous system issues that sjogrens and other autoimmune disease can cause can be the pits. Some balance issues are also caused from autoimmune but in a little different way. Lots of ways to be "dizzy".
Hope that you can get your life back on track. Going to a psychologist would be a good way to sort things out for you. So many times we get so overwhelmed by our health that we lose our perspective about ourselves and our life and family. Having someone outside the family to talk with can be a lifesaver. If this doc thinks that you need an antidepressant he/she will see that you get the appropriate treatment.
Do not be discouraged about having a depression and needing antidepressants if it comes to that. Many, if not most, of sjogrens patients end up on antidepressants. Studies have shown that sjogrens causes a very high incidence of anxiety and depression. The study showed that sjoggies have even more depression than lupus patients. How the medical community was able to do that study I will never know cause these 2 diseases are kissing cousins.
Just know that we are here for you and we care. Better to come and vent here cause it saves us from venting on the relatives who just sit and nod their heads and don't get it. Good luck. irish ;D
Thank you everyone for your insight into sorting my problems. I haven't searched my own thread until now.
I've been having good days and bad days (more improved days) and it seemed like I was getting better slowy. My dizziness seems to be gone actually!
Because of the fiascoes I had that started around April and May, I stopped Hydroxychloroquine and Plendil(for Raynauds.) I read somewhere that our body renews itself completely in about 9 months. So I wonder all the possible drug reactions I was having are taking their time to be removed.
So, I was beginning to think that maybe I might not have Sjogrens on those rare days I almost feel normal. (Maybe that's why my reumy wanted to do lip biopsy!) My Raynauds seems to be fine even though I stopped the blood thinner. Then today, I feel like I climbed a mountain yesterday, so sore and tired. All I did was sleep, eat and sit around, being tired from sleeping...drinking coffee to wake up. I'm ready to call my primary doctor to get her perspective. And a psycho-therapist for my depression. I will see my Reumy and revisit the lip biopsy issue again and find out what he had in mind.
Can depression cause you to be so sick and tired as well? How do you find a good, effective psycho therapist? I think having Sjogrens makes it harder to deal with stressful events perhaps.
Charlie,
I apologize; I missed your earlier post. Allow me to welcome you to Sjogren's World! ;)
I'm glad you're feeling better, and not dizzy. I am not a medical professional, but it seems possible that if you were having side effects from meds, they can take months to release from your system. Best to ask you doctor about their views on that.
You may also want to check with your GP about their recommendations on finding a good therapist. It seems so many of us struggle with depression from time to time. I believe it actually could be a part of the disease, rather than a cause from being ill. And I think you're right that having Sjogren's can make it difficult to deal with any other stress.
Yes, depression can make us feel "unwell" overall, very tired so that we sleep alot or not much, and we can have physical pain, too.
Please keep us updated and feel free to ask anything. We will try to help. ;)
Take care and again, we're glad you're here.
Melinda
Cognitive Behavioral Therapy provides us with methods of managing depression. "Feeling Good" by David Burns is a good resource.
Chronic Pain has been proven as a major factor in depression. With Sjogren's as with other autoimmune diseases you have chronic pain. It is best to find help.
Hello all,
So, I saw my primary doctor the other day. She recommended therapy for my depression and wait on any medication since I'm sensitive to meds.
Still extremely tired to perform normal stuff :(
I would like to hear from you what you are doing for your depression, what treatments are you getting? Are they helpful? What are your experiences?
Is waiting on meds too passive approach? Should I just go for some meds if I want to get better more aggressively? I found a therapist online and she does cognitive therapy using eye movements that sounds interesting.
Thank you Joe. I am going to get some books like Feeling Good as well. Are you getting professional treatments as well?
My next visit is in February. I am doing the exercises and CAM therapies to manage between sessions. It has been suggested that I find a new hobby as a distraction.
In the past I never would have thought so, but finding a new hobby for a distraction does help me now. I can have a day feeling nervous, and go to my couch where I do some quilting.
I am working on a quilt, and I never use to do this. Because I enjoy it so much, it seems to take me away from everything else, and I can feel the stress leave my body.
i do also take antidepressants, (effexor) and have for years now. After I had a second time of having depression the Dr. said I then needed to be on them for life.
I do believe the sjogren's and Lupus both connect with the depression and other disorders I deal with.
susanep :)
Hi Charlie and welcome:
It sounds like you are doing all the right things for your situation, by dealing with the depression first and then figuring out if you need any meds. If I could get along without meds I would. As it is, I've been able to cut back the dosage on many of them.
I've had the dizziness caused by auto-immune vestibulopathy and one of the most useful things I've done is get a set of physical therapy exercises to help my balance. We are fortunate to have a physical therapy clinic nearby that includes specialists in balance issues. Doing the exercises helps both with balance and with energy level, for me.
Another way I keep moving is to work in the garden, which is both exercise and relaxation or meditation for me. It takes my mind off my body. It is important to find what works for you and not overdo it, but also don't "under-do" it.
Take care,
Genko
Charlie, in your first post in this thread, you said:
"I just want to feel normal again soon... or well enough to function."
In another post, I think you said your doctor (rheumy?) greed with staying off meds for a while. She (the rheumy?) also suggested seeing a psychotherapist.
I'm going to do some interpreting, here. Your doctor did not suggest contacting an online therapist who diagnosis and treats by eye movements. Your doctor, others on this forum, and I, would want you to see IN PERSON a qualified licensed mental health professional. Such a person can be a Licensed Clinical Social Worker, or a Licensed Couviornseling Psychologist, or a Licensed Clinical Psychologist.
I understood you to say that you and your doctor agreed to stay away from drugs, including drugs for treating depression. That means you would not see most psychiatrists, because they are MDs who can and usually do prescribe medications to handle depression.
Cognitive Behavioral Therapy (CBT) treats depression in the here and now, without delving into childhood and family dynamics. Often what you would do is make a contract with the therapist to complete certain behaviors between sessions. You might also contract for a certain number of sessions at the therapist's suggestion, or according to your health insurance.
This would be difficult if you have Sjögren's type of fatigue, that hits willy nilly, whether you've been eating and sleeping properly, or not. If your depression is predictable, with times of day that you are particularly sad or slow or down, then, yes, go for Cognitive Behavioral Therapy.
On the other hand, if you are uncertain how to describe a typical day, or there is no typical day, but you do feel sad, then see a Licensed Clinical Social Worker, or a Licensed Counseling Psychologist, or possibly a Licensed Clinical Psychologist in private practice.
Here's an example of behavioral therapy -- that may seem silly to you. A therapist might ask you to carry around 3 x 5"cards, and write down each of the questions you have asked in your posts here, and put them away in a carrying case, without looking at them again. More questions? -- write them down, and put them away.
Bring them to the session with the therapist. Deal with the questions there and then. Go home. Some questions have been solved, some have not, but they have been dealt with for the week.
You may be disappointed that the therapist doesn't do what I've said.
What I *can* promise is that when you see a real live professional person, you will get a full 45 or 50 minute session of concentrated attention on you and your problems, by a trained listener who wants to understand what is happening with you. You, in turn, bring your honest responses to the sessions.
You are not working now, and may not have health insurance. How to solve that issue depends on the resources you have, that I don't know about.
I can suggest some possibilities if you are willing to tell me what they are, either in a pm or a reply to this post.
Steady. Talk to you soon,
Soycoffee
Hi Charlie,
Let me also welcome you to the SJS World and family! I'm so glad that you had a chance to look around the board!
It looks like you've gotten some good advice and there's not much I can add.
Take care of yourself -
Patze
I read your post, but not the replies. (may be a stupid move!)
I have had Lyme disease and I can tell you that docycycline can and will make you dizzy if you have Lyme or some other infection. Doxy crosses the blood brain barrier. What you are experiencing may be a Jarisch-Herxheimer reaction. That would also explain the weakness and even the depression.
Quote from: jazzlover on November 27, 2011, 06:36:56 PM
I read your post, but not the replies. (may be a stupid move!)
I have had Lyme disease and I can tell you that docycycline can and will make you dizzy if you have Lyme or some other infection. Doxy crosses the blood brain barrier. What you are experiencing may be a Jarisch-Herxheimer reaction. That would also explain the weakness and even the depression.
Fascinating!! Learned something new today!
Like we say on the Lyme board... "not everything is Lyme"
same here.. not everything is Sjogren's
It's always good to keep that in mind.