Hello Everyone....Here's My Story

• by sdjones
• 2007-07-13 04:07:51
• General Posting
• 2009 views
• 4 comments

Hello Everyone,

Let me tell you all about myself.

I am 40 years old, weigh 211(down from 245 last year), and have had CFS for the last 8 years. During this time I had the swollen lymph nodes, pressure in head, vertigo, forgetfulness, trouble finding the right word, unrelenting fatigue, palpatations, low blood pressure, and low temperature.

My primary care physician never, and I mean never, requested any tests for me other than the complete blood count, thyroid, and the chemistry panel. These, they said, were normal.

Fast forward to the beginning of this year. I have been having trouble with my nerves off and on for the last three years and also during that time I've been losing the vision in my right eye due to a swollen optic nerve.

My disability was approved just last May of 2006, so, I guess that is why I never pushed for further tests. I didn't have any money to go get them done. But, now I have medicaid and I am finding out a lot that I didn't know before.

I've never went on a nerve pill because I had read about all of the terrible side effects, and with my nerves already bothering me, I couldn't bring myself to try the nerve pills that my dr. wanted me to from the beginning.

I am a herb person. Have been since I was 17 years old when I first began reading about the help that natural treatments were giving other people. As time went on, however, over the next 5 or 7 years I got away from reading about them.

It's now 1999 and I came down with the flu that was making its way around that year. I was sick for 6 weeks. I mean really, really sick. Couldn't get out of bed for most of the time.

After the flu left I was feeling mostly back to my old self. I still was a little weak and since I hadn't been able to eat much of anything for the prior two weeks(I thought I was gonna starve) I was happy the first day I was able to eat an entire Hardee's cheesburger

Two weeks after this, I was shopping in Winn-Dixie and hadn't no more than got to the second isle when it seemed like all of the previous mentioned symptoms hit me all at once. Panicky, I went back to the car and left my buggy.

Every year since then has been more of less the same. Until this year. I knew that caffiene and me do not mix, but, I was depressed about turning 40 and still being overweight. In January of 2007 I stopped paying attention to the amount of sodas that I was drinking, as I was depressed. I just said to myself, I'm never gonna take this weight off, I can't exercise, I'm never gonna feel better, so eat and drink what you want.

Of course I truly cared what I drank. I just got so disgusted at myself and the way my life had gone; more times than not, I just said to myself I don't care what I eat or drink.
I knew that when I drank caffiene, my chest would feel tight and my heart would palpitate more often and sometimes would feel scary. When this would happen, I would try so hard to quit the sodas and would go about two weeks then I'd be right back on them.

Fast forward to May 08, 2007. I was feeling better than usual that day. I had spent the previous few days digging a little garden for myself right out back of our back door. All I had to do was go get the water hose from the front yard down by the chicken coop and pull it back to my garden.

I made it with the hose until I got to the back steps and then the hose felt like it was stuck on something; maybe a tree root. So, I gave it a good pull, and felt a tightening in the center of my chest. Then my heart went racing; all the way up to 123 beats per minute. And my blood pressure went up. Also, my temperature, which was at 93.8 at the time dropped two degrees during this episode.

This had never happened before. I've always had a relatively low blood pressure, but, a good pulse when I checked.

It scared me to death and I sat down. My mom has some Inderal for a fast heart beat 20mg tablet that she only takes less than a quarter of when her pulse is in the upper 80s. So, I got one of them and took just a small piece. After a little bit it began to calm down and I was so relieved.

That was on a Sunday. Monday nothing happened at all. No, irregular heart beats, no rapid pulse. No out of the ordinary symptoms.

Tuesday it was back again. Rapid pulse, higher blood pressure.

Wednesday; normal. Nothing.

Then it gets to Thursday and after that it was an everyday occurrence. My nerves began to bother me big time and I called our naturopath. Told him of my unusual experiences and that I thought it was from the caffiene that I had been consuming since it always had such a bad effect on me in the past. I told him about my temperature readings and he said that it sounded to him like my thyroid was collapsing.

He sent me L-theanine for my nerves, some cell salts for my nerves, told me to take a calcium/magnesium supplement(said they were good for panic attacks), a thyroid supplement, and told me to call him back in about a week to give the treatment time to begin working.

Well, I want to tell you kind people. My nerves were so bad by this time that I couldn't even have the t.v. on. No noise. It was hard for me to even have a conversation with my mom because of my nerves.

I tried, faithfully, his program. And I believe that it was helping. My nerves were trying to calm down. But, the breaking point when I finally had to go to the ER was when we had a bad thunderstorm with hail. It made so much noise that I thought my heart would come out of my chest.

After that evening, which was the 6th or 7th of June 2007, I would watch with dread when another storm approached. One evening, on the 8th of June I couldn't handle another panic attack. It was bad enough to be beat up by my nerves all day. I had gotten to the point that they were even preventing me from eating. There would be days all I could do would be to drink something and eat no food. I was getting weak.

So, I called the rescue squad. They came and got me and took me to the ER. I told the attending physician everything that I have just told you. He gave me Ativan 2mg. That was Friday. The next day, Saturday, I slept until 2:00 pm and checked my pressure when I got up. This is the first day that I've ever recorded my pulse as in the 40s.

While at the ER they gave me a prescription for Clonazepam 0.5 mg. 2x daily as needed. I took one about 3:30 pm Saturday afternoon as I was beginning to get anxious. During this time I was measuring my blood pressure and I noticed that when I took the Clonazepam, my pulse was climbing back into the 60s and 70s. Then, after the med had time to begin working, my pulse went back down to the 40s.

That scared me and I asked my sister to take my back to the ER that night. I asked them to please admit me to the hospital as I knew something was terribly wrong with me. I asked them if the med could have slowed down my pulse like that. They told me that yes, Ativan was designed to slow everything down.

The doctor ran an EKG and she said that they couldn't admit me without a medical reason. She said that my EKG looked fine(a 10 second EKG). I kept talking to her and telling her that for the past 2 weeks I have had to sit in a chair all of the time because when I stood up my pulse would race and my blood pressure got up to(at one time) 153/113. I begged her to let me stay for observation.

She ran another EKG and this time saw the arrithmyia. They sent me up the road to Roanoke and place me on the observations ward of the cardiac unit.

I felt so relieved that I was finally going to find out what was wrong and fix it so I wouldn't have to sit in that blasted chair anymore.

I got at the hospital early Sunday morning about 3:00 am. They checked me in and hooked me up to an EKG monitor that they could see from the front desk at all times.

When morning came, Dr. Ronnie came in and told me that my problems might be coming from the meds(both natural and chem.) and they wanted to go as natural as possible for the next couple of days to see if my problem resolved itself. They told me that I came in with first degree heart block, however, I was going in and out of 3rd degree heart block. My pulse was dipping into the 40s and even to 38. He told me that I also had a 5 second pause in my pulse.

So, on Sunday June 11th, they began informing me that I needed a pacemaker. This really scared me. They told me it would be permanent and then they went through the in and out's of the procedure with me.

I didn't want to get one. I never knew anyone with one. And in my mind, I blamed myself for starting this whole thing with the caffiene and then I blamed them at the ER for giving me Ativan that slowed my pulse down so much. I was a mess of nerves. The nurse told me that I could take something for my nerves if I wanted to, but, I thought that would finish me off if I did.

Every nurse and nurse's aid that was assigned to me I worried them to death with questions.

Do you know anyone who has one? How did they do with theirs? How long have they had theirs? Do you know of anyone that got better from heart block? and on and on.

One particulary kind nurse, John, talked to me the night before the procedure for two straight hours. He said, If it was me I would've had them do it the first day, because that is where my faith lies; in modern medicine.

The night before my procedure, my blood pressure dropped to 85/45 and I was so scared. My other nurse that night told me that don't worry about those numbers because that isn't even your true blood pressure. What in the world does that mean? She said it's just the machine's reading.? ?

I don't understand....

My family came up to see me the next day. That was June 12th and the day that I had the procedure done. They said all went well and I should be able to go home in about a day.

I guess that it was the meds they gave me to relax me during the procedure. But, as worried as I had been, I was the calmest that night and I slept like a baby. Before going to sleep a thought came to me, as I had been praying a lot: my thought was.....you only have to wear this until Jesus comes back. That made me feel so much better. I can't tell you.

While at the hospital, after the procedure, they did a CT scan of my abdomen and found all of my lymph glands swollen. One had already been done at the ER down the road on my chest and the glands were swollen there too.

While at the hospital I had several doctors. I had two cardiologists, one main doctor(the admitting one), and I think a blood doctor(Dr. Ronnie sp?). Dr. Ronnie told me that he was concerned about either lyme disease or lymphoma. The lyme test came back negative. So, he wanted me to see a cancer/blood specialist.

I was discharged on Thursday June 14th and begin my appointments with the other specialist. After he saw me, he said that he thought that they jumped the gun at the hospital. He said that he wasn't to concerned about cancer since I've had it for so long. He believed that it was more a of microbacterial infection as there are 30 - 40 lesions on my spleen(normal size spleem) along with my swollen lymph nodes.

Since I'm overweight, he told me that the nodes were deep inside of me and the only way to biopsy one was surgery. He said he's not in a rush to do that right now. I was relieved.

He wants me to see a rheumatologist(for the fatigue), an infectious disease specialist, have an ultrasound done on my spleen(have that one on this coming Monday), and a lung specialist. As far as I know that's all for right now.

He did say that he thought the infection was the cause of all of my problems including my eye. So, that made me feel better. I thought that maybe if I can clear up this long-running infection then maybe my health will be restored.

I have to hold on to this anyway for now.

I went back to see my cardiologist about a week ago and he said everything looked fine. He saw one of the palpitations on the EKG and said that it was a pre-contraction and that everyone gets them. If they become bothersome and affect the way I feel then let him know. In my research over the years, I have read that these are coming from a defective thyroid and adrenal glands. Maybe if I can get the blood disorder cleared up then this will clear up as well.

This coming Monday I have an ultra sound on my spleen at the same hospital that I stayed at for the pacemaker. I don’t get to see the infectious disease specialist until the 16th of August. I truly wanted to see that one first.

I was weak when I came home from the hospital and I was hoping to at least be able to move about like I used to before all this began on May 08. I can’t stay on my feet but just a few minutes, if that long, before I become short of breath and have to sit down. Don’t know if it’s my nerves(they used to do that to me) or maybe I’m just taking longer to get back on my feet since I have the blood disorder? As of today it’s been 4 and ½ weeks since the procedure.
What do ya’ll think?

I guess that’s about all. I am glad that I found this message board. I have read so many helpful things on it. I especially gain hope from the fact that some of you all are being able to have your pacemakers removed, and that to me means that your hearts are allright! For this, I congratulate you all.

In closing, I would just like to say that I look forward to the day when I can post that my heart is using my pacer less and less and finally the doctor says to me, “You don’t need it anymore.”

God bless all of you and may all of your hearts get well.

Best Regards,
Sandra