PDA

View Full Version : I can't find the words....



Kara
12-28-2009, 09:39 PM
Hi. My name is Kara. I am 35 years old. Mother to a 3 year old boy, and 5 year old girl. Up until April 2009 I had a picture perfect life. Then I woke up one morning with a numb buzzing feeling in both of my wrists. The feeling did not go away, and within a day or so it had spread up my arms to my elbows, and the tops of my hands. I started to panic. Next my entire body started to buzz and I started getting muscle spasims all over. I knew something was terribly wrong...but what? I spent hours on the computer searching everything about numbness and tingling in the hands. I managed to completely send myself over the edge with panic. I was convinced I had MS or ALS. It was at that point that I started having nausea and vertigo.

I went to my GP who told me I was stressed and wrote me a prescription for Ativan...When my symptoms did not subside, I went back and she sent me to a rhumy. On my third or fourth visit to my family doctor, I convinced her to send me for an MRI. I had both my cspine and my brain MRI'd to check for herneated disks or MS...they all came back with no abnormalties. I visited a naturopath who belived that I might have Lyme disease, so I paid for a $400 test, which came back negative...Even after the test came back negative, she still insisted it was Lyme disease. Then I went to see the rhumy, and he ran an extensive blood panel on me. While I waited for blood test results, I visited the ER twice, and was sent home both times. Reasured that it was "nothing serious" probably an injury. But inside I knew they were wrong. I visited with two neurologists who said they could find nothing wrong with me, and also belived I had injured a neve in my neck or my back.
I started to believe them...and for a while I improved. I went back for the blood test results from the Rhumy and he told me everything came back normal...except for one test. The Anti-SM or smith antigen test had come back with a "low positive" result. But he assured me that it could be a bad test, and I should come back for a retest in 6 months...Not knowing anything about the test, I agreed. Besides, I seemed to be improving. The twitching had subsided, the electric shock feeling in my body had dissappeared. I still had pain in my arms, but it also seemed to be improving. I thought I had really "dodged a bullet". Maybe the neurologists were right after all. I started to relax.
But just when I had convinced myself that I was going to get better, 2010 was going to be a better year for me - everything flared up really badly again....9 months after the initial flare up! I was crushed. I knew this was not the result of an injury.
This happened on Christmas eve.
Now once again my mind and body are spiraling out of control. I know something is seriously wrong with me, and Lupus seems like the likely culprit. I searched the Smith Antigen online and it said that it is a marker for SLE, and that false positives are very rare...
So here I am...I feel like I am stuck in a dark well and I can't see the way out. I am not dealing with what is happening to me well. Anxiety is out of control, sleep is not good. My husband cannot understand and I think he thinks I am making it up...Sometimes I wonder if I am just crazy?
I am in a downward spiral and I don't have any control over it. I keep wondering, how I am possibly going to get through this. I am not a very positive person to begin with...
I see my two childrens beautiful faces and I wonder what effect this will have on them. Will I get to see them grow up? Will my marriage survive this disaster? Will I be able to work?
What will happen to me when I start taking medicine for this?
There are so many unknowns....I search your forums for answers but really I seem to just have more questions....My hands are burning and my heart is racing as I type this....I am feeling very sorry for myself, and I know that I have to change my attitude. But how? How do you accept something like this life? I love the sun. My family spends the summer at the lake. I am going to Mexico in 4 weeks...I am going to Arizona in 8 weeks...Am I going to be sick the whole time?
I just don't know where to begin with this? Does it ever get better? Do the medications actually work? Should I be changing my diet? Should I go the natual way for treatment? Will I ever be the same again? Will I ever feel like myself again? Racing thoughts just overwhelm me. I know...things could be worse..I could have cancer...but there is nothing about this that is good.
Have you all been to this place before? Do you ever get out? Is it possible to have Lupus and still be a happy person? What do I need to do?
Well I guess I found the words. And it felt good to get them out. I would love to hear back from some of you. Thanks.

rob
12-29-2009, 05:05 AM
Hi Kara,

I'm Rob, and I was diagnosed with Systemic Lupus in 2004, and then MS last year. You certainly have alot going on. I read your story twice to try to get an overview of your symptoms. Sometimes we have people here who mention some very typical symptoms associated with Lupus, others have more non-specific ones. Your symptoms are a bit confusing, but Lupus is notorious for being very different from person to person. No one person ever has the exact same set of symptoms, and the symptoms can change at a rapid rate.

However, there is one thing that stands out as far as your test results. You mentioned the Smith Antigen Test. The Smith Antigen is named after a patient who had Systemic Lupus. A positive result of this test does indicate that there is Lupus activity present. From what I know of the test, it is rare to have a false positive. However, a negative on this test does not rule out Lupus. Confusing disease Lupus is.

I don't know if you have Lupus or not, but I do have some ideas for you to consider. In the "sticky" areas of each page of this website, you will find info and facts about Lupus, including a list of the Diagnostic Criteria for Lupus. I would read these criteria, and go to a Rheumo and ask if you could be tested to see if you meet this criteria. There is no single test that determines if a person has Lupus or not. And, the disease is notoriously hard to diagnose.

Also, have you ever noticed that the symptoms you are having are related to sun exposure? Have you had a flare up of the symptoms shortly after being in the sun? UV radiation is a sure fire way to trigger a flare in most Lupus patients, and could be another clue as to what's going on with you. I wish I had more specific answers for you, but Lupus is a complex disorder.

As far as living with Lupus, I live with SLE and MS, and although I'm on full disability, I do lead a relatively good, fulfilling life. I'm pretty happy despite it all. I have good days, and I have bad days. I endure the bad, and I pursue the good with a resolve that I never knew when I was "healthy".

Hopefully some of our other members here will chime in with their opinions on your situation. We have a large base of knowledge here, and we'll do what we can to help you figure this out. Welcome to our group, and know that your are not alone in your fear as we have all been there at one point or another.

Rob

Kara
12-29-2009, 08:01 AM
Hi Rob,
Thanks for your response. I really appreciate it.
As for symptoms I have had the following: constant pain in my forarms that never completely goes away. Changes from burning, parasthesia (sp?) feeling to deep muscle aches to bone pain randomly. When it is really starting to flare up I get stabbing pains in the muscles. I also get really stiff joints especially the knees, pain in my back, neck and shoulders. I get nausea and vertigo. Fatigue comes and goes. Muscle twitches all over my body that wake me from sleep. I have had some headaches but none too severe so far. A burning feeling on my skin primarily my arms and face. I have not noticed the butterfly rash yet, but I have had a lot of burning on the skin in that area. I am so hot at night I can't get comfortable...sheets go on, sheets go off...Insomnia is always there especially when things flare up.

I was at my worst in July and August. My initial flare up came on about a week after I returned from a three week long trip to Arizona. My symptoms improved during the fall. With only mild flares every few weeks. Until now. It is cold here...very cold. I live in Canada. So I can't blame the heat for this one. I would say this flare up is close to as bad as my initial one. I don't know what brought this one on...I am guessing maybe bad diet (too many christmas parties) or stress and lack of sleep.

I have looked at the list of criterea, and I think I fit a lot of it. I have read a lot of posts on here that sound so much like me....and I think the Smith Antigen test is likely going to come back positive again....but who knows for sure?

Up to this point I have taken nothing to relieve my pain. Advil and Alieve do nothing to help me. I have had no pain killers. No treatment at all. Other than Ativan which did nothing but add other problems. I feel Lucky that I did have a 3 month period where I could function quite well. My symptoms slowed down and the only thing that still bothered me was some slight pain in my arm....But for the last few days I have been in the throws of a major outbreak...The last one I had was terrible and lasted for 4 months. I really hope I don't have to suffer that long this time...
I am really glad to hear that you have managed to find a good life for yourself despite all of this. I hope that I will be able to do the same. At this point I don't feel very confident...but what other choice is there?
I will say that this disease has given me a new appreciation for health. I really do enjoy the good days...when they come. I don't think I knew how lucky I was before this happened. I stressed out about all of the wrong things...I wish I could take some of that back.
Anyway. It is nice to know there is someone out there who understands what I am going through.

rob
12-29-2009, 08:27 AM
Hi Kara,

That clears things up a bit for me. Many of those symptoms are the same as what I've experienced. The joint problems are very common with SLE, and I have those strange burning aches that seem to be down deep, in the bones is the best way to explain it. I get a burning sensation both on, and under my skin. I am too warm all the time too. At night I sometimes feel like I'm on fire. I also get muscle twitches but my neurologist attributes that to MS and not SLE. For me, it's hard to tell where one disease ends, and the other begins. Just an FYI, I have been dealing with Lupus for over 6 years now, and I have never had the butterfly rash on my face.

Getting a better overall description of your symptoms does make my opinion lean towards Lupus. Of course, I'm no Dr., and I'm simply basing my opinion on a comparison of your symptoms next to mine. I used to live in Arizona, and I had to move because of the heat, and the intense sun. I live in Maine now, and the cooler climate combined with the lack of intense sun has really helped me. Also, the low stress lifestyle here has helped more than anything I think. Stress can easily cause a Lupus flare. Overly taxing your system with lack of sleep and "burning the candle at both ends" can also cause a flare.

I would keep a notebook or journal of all your symptoms, their frequency, and intensity. Make note of things like feeling fatigue after sun exposure. Find yourself a good Rheumotologist, and take your notes with you. Tell him/her that you believe that you may meet the diagnostic criteria for an SLE diagnosis, and you want to begin tests to see if it's possible. Do not let anyone tell you it's all in your head. That's a cop out commonly used by some lazy, less qualified health care "professionals". Don't hesitate to seek a second, even a third opinion.

Educate yourself (which you are already doing), and be your own advocate. All of us who have been diagnosed with SLE just knew in our heart, and mind, that something was wrong. For me it was pains and sensations that were totally different sensations from "normal" pain. Trust your instincts.

Check this thread to see what others may think. There is alot of sound advice to be had here, and our members collectively are a virtual autoimmune encyclopedia. And please, have hope. You can get the answers you need, and when you do, you can start a course of treatment. I hope you don't have Lupus, but you need, and deserve an answer. If it's Lupus, so be it. It can be managed, lived with, and is by no means an end. The hundreds of active members here are a testament to that.

Rob

P.S. What part of Canada do you live in? Nova Scotia is just across the bay from me, and my mother is Canadian. She's from New Brunswick.

abbasgirl
12-29-2009, 10:15 AM
Hi Kara and (((((Hugs))))

Rob's reply covered so much. I'd just like to add that in your search for answers, you're going to find a lot of information. Don't let it overwhelm you. As Rob said, stress is a big trigger for flares. Labs alone are not a good way to find a diagnosis/es. Make sure you have a doctor that is considering all your symptoms and is running other tests. For example, a nerve conduction test or EMG may be a good idea. A good neurologist may be the best help with that.

You are not experiencing these symptoms because it's all in your head. Your body is telling you something is wrong and you need to know what it is and be treated so you can have a better life. There are many treatment options and so many here are living life happily.

bunnie
12-29-2009, 11:30 AM
Hi Kara!
I have little ones too. I think that adds a whole other layer to being chronically ill. My boys are 9 and 7, and I have a 10 month old girl. The best thing about being a mom and dealing with all this is that they bring me out of myself. I can't get lost in self-pity. I have cuties to hug and laugh with.
I have had terrrible forearm pain for the past 4 weeks or so, so I can emphasize...
My story is long and I'll try to keep it succinct.
When I was 27 (9 years ago), I had sciatica that began while I was pregnant with my first child. I was told it would get better after his birth. It just got worse with time, and a year after he was born I was also diagnosed with sacro-iliac arthritis, which caused the sciatica. I had an MRI shortly after that and was diagnosed with degenerative disc disease, bone spurs and calcium build up in my spine. I had baby number 2 and things got worse. My back pain was constant and debilitating. Visited a rheumy who was very dismissive: ( come back when you can't walk anymore), saw a pain specialist who caused me more pain when giving me cortisone injections. Then I was diagnosed with chronic hip bursitis and depression. ( been on zoloft ever since, except during pregnancy) Tried many nsaids, none worked better than ibuprofen. I take the occasional (5 times a month at most) vicoden to get through days that are bad.
I think I went through about 3 years of really adjusting to my new status in life. I was too focused on my pain, and what I couldn't do anymore. I had this vision of what I would be like as a mom, and I wasn't living up to my own expectations. Learning to live in that "narrow energy window" , where I was at my physical peak, and could push the pain back for a while, was the hardest thing to learn. My house wasn't clean enough, I wasn't cooking enough meals, I wasn't able to run and play as much with my kids. I felt robbed.
I often had thoughts of guilt. I would talk to my hubby of feeling worthless. I wasn't a good enough mom, a good enough wife, a good enough friend. If I wasn't meeting my OWN standards, how could I meet anyone else's??
I had a miscarriage in 2005, and after that I started getting strange rashes, headaches, hair loss, all attributed to the hormone-roller coaster I had just been on. We had our miracle daughter last winter, and shortly after her birth, my skin went hay-wire. I can't be in the sun at all anymore. I wear spf 70 at all times. I have lesions on my arms, face. Petrichae on my legs, trunk. My toenails all fell off. My hair has continually shed at astronomical amounts. ( I am a golden retriever, I'll say) Joint pain is spreading and now includes: both hands, wrists, shoulders, hips, ankles, balls of feet and toes. I get frequent headaches. My forearms are in constant pain, not helped by lugging cute 22 pound girl around. All of the compact flourescents I had in my house are now gone, and I think that has helped with the headaches a bit. But all the stores have them, and it causes me pain.
I have been told it could be fibromyalgia, my docs are reluctant to diagnose with lupus, because my ana is normal.
So it's a matter of waiting, re-testing, etc until it is definitive.
Things I have found to help the most:
1. My kids, who help me not to focus on myself. And I don't complain in front of them, they can pick up enough from my talking to others about it, and the level of activity I am at on any given day.
2. Faith in God. I don't know where you are with this, but knowing I am loved unconditionally and just as I am, is priceless.
3. My hubby, who makes me laugh and feel human everyday. We use the "spoon theory" (you have to read this, just google, it comes right up) to communicate pain levels.
4. Knowing when to rest, when to push, is more of an art than a science, and finding this balance has been wonderful for me.
5. Letting go of those images I had of me in my head, and just accepting what I could do, and learning to appreciate that.
6. This website. You will find great advice, lovely souls on here.

God bless, and keep us updated on your journey,
Deb

Kara
12-29-2009, 01:07 PM
Thanks to all of you who have answered my post. It means more to me than I can express...
Rob, I live in Calgary, Alberta. Western Canada. Close to Banff if you know where that is? I have tried to keep a pain journal in the past...but I had a hard time keeping it up. I should try to do it again...
Abbasgirl - Thanks for the hugs!! Virtual hugs hurt a lot less than the real ones.
To tell the truth, I already feel very overwhelmed with all the info I have read. (I have read a lot!) And I am very scared as well...A lot of posts make it sound like the treatment is worse than the disease...what are your thoughts on that? I have always been a very small person, athletic, I used to run everyday....I know this sounds like the least of my worries, but I am worried about gaining weight when I go on medication. Because I know that that will send me into an even deeper depression than the disease itself. It sounds stupid and vain...but I know it is the truth.
Bunny - You are a very strong person. You are so right - having kids makes this problem even more complicated. Today my daughter asked me why I couldn't push her on the swing, why I couldn't pull her in the wagon...why I was sick yesterday, and now sick again today. It broke my heart to hear her say that....I know my illness is going to have an effect on her life, and the thought kills me! I, like you have this idea of what I am supposed to be like as a mom. I was doing a pretty good job of it up until this disease started its attack...now I do feel like I am a complete failure as a human being. Even though I know that this is out of my control - I still feel the desire to control it and frustration becuase I can't!

I am in awe of your strength. Going through all of that and still going ahead with a pregnancy...I could not imagine being pregnant or even having a baby to take care of in the middle of all of this...you should be very proud of yourself. I am sure you are a great mom too.

I do agree, having my kids around helps me to pull out of my bad thoughts, put my fears aside and get on with life. I really want to do this for my husband as well. I know that he is struggling to understand what has happened to me...

Today my husband is at work, and my kids are still off school. My friend called and said she was taking her kids to the park to go sledding. She wanted us to come a long. I managed to get the kids out the door and walk all the way to the park. When I got there I felt awful. Just felt sick and achy all over. But I managed to push my kids down the hill a few times and have a few laughs...it was good. Now I have just arrived home and I feel totally exhausted...I think I must have sent all of my spoons down the hill with the sled...I need to get some more spoons to make it through the rest of my day.
Anyway, I am going to go see the rhumy again in January for the re test of my blood. Maybe this will provide me with some of the answers I am looking for. Anyway, I should go break up the fight my kids are having... Thanks again! Kara

joaney
12-29-2009, 06:58 PM
Hello Kara
I wasn't going to reply to your post, as sometimes it's hard to find the right words to say. You remind me a lot of the way I was when I first found out about my AI problems. I am 30, also with 2 young children aged 6 and 3, so I know how hard this all must be for you, however, now that you have found the right words, i'm sure that you will also find the strength and courage to help you get through this.
My thoughts and prayers are with you.
Joaney.

bunnie
12-29-2009, 09:46 PM
Hi Kara,
I laughed when I read that you had to go break up a fight!! Ah, motherhood. :laugh:
You will be amazed at the strength of many of the members here. And we all struggle day to day, so we can lift each other up on those sucky days. I don't necessarily feel strong, but I do have a peace now about my condition and my health that I didn't have when things began for me. After I lost our baby in 2005, we figured that was the sign that we shouldn't have any more, and my sweet hubs went under the knife!! (snip, snip) And four months later: Hey, honey, I think I may be...... Pregnant!
Ah, God always has the last laugh, and now we have a beautiful, healthy, baby girl. We needed to balance the testosterone out in our house!! I was so scared she wouldn't be okay, we weren't planning on her, and I was on all these meds, but I stopped them the moment I found out I was pregnant, and God protected her!!!
I am so glad you got to go play with your kiddoes, doing those things can really help you feel "normal" for a time. Just take it easy afterwards, and be prepared to take it slow the next day, or two, or three.... It varies. You'll find your limits, and learn to see the times when you need to go slower, or can chance pushing things more.
Bless you and yours,
Deb

puzzled
12-30-2009, 03:58 PM
Hi Kara, i know exactly what you are going through. I to am undiagnosed with the possibility of lupus. Like you i have horrible symptoms that interfere with my ability to raise my two young children the way i would like to. At the moment i get by, but wish that i could do more with them without the feeling of pain and fatigue (and gulit). It's rather sad and a cruel blow that we should have to deal with such awful symptoms while raising a young family. In fact its awful that anyone should be experiencing such awful symptoms.

But what i do know is this, I have been having symptoms on and off for six years. There are weeks when i am good (despite some aches and fatigue) and then there are weeks when i appear to be in a major flare (hair loss, joint pain, chest pain, brain fog etc). Recently the major flares have become more frequent, but there have been times that i have only had minor symptoms for awhile. I have learnt to enjoy those times. I have come to accept in the past six years that this could be as good as things get. My hope is that eventually i will be diagnosed with something and that treatment can commence and i will begin to have more good days than bad. I hope the same happens for you.

Good Luck in finding some answers next year!

Kara
12-30-2009, 09:15 PM
Bunny,
Your daughter is adorable!! It must have been quite a surprise to find out you were pregnant! Little girls are wonderful...my daughter Ava was kind of a miracle as well...it took 3 years for me to get pregnant with her. My son Max (3) is a bit of a terror...but I love him just the same. He loves to play the guitar he got for Christmas. He is actually pretty good at it for a three year old!
Joaney, Thanks for all your kind words. Joining this board and talking to people who actually understand what I am going through has helped me so much over the last few days. My family tries to be understanding, but well I am sure you know how it is. Our kids are almost the same age. It is a busy time. My 3 year old still likes to be carried a lot, I find that difficult. I have always wanted to visit Australia. It looks like a beautiful place. But how do you cope with the heat? I ask because I am going to Mexico in a few weeks, and I am very worried that my trip is going to be a disaster...
Puzzled, you hit the nail on the head! I do feel like it is cruel that this happened to me at this point in my life...I said that to my mom and she said "why not you, why not now". Which I suppose is true. I know everyone has things in their life that they have to deal with, and this is what I have to deal with...but some days I am better at dealing with it than others. Three days ago I was ready to jump of a bridge. Today - I don't feel too bad. Tomorrow....is a mystery. I guess that is how this disease works.
Thanks to everyone who has been writing back. I love this forum. I think I will be around for awhile. Probably asking too many questions. I don't know how much advice I can provide, but in time maybe I will be helping the newbies get through these days just as you have all helped me. Thanks again!