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FreckledKat

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I’m about to turn 25. I’ve been sick for 6 years now, going into the 7th year. I have seen tons of doctors, including specialists at Cleveland Clinic, and have had many tests done, but not one doctor has been able to diagnose me. A couple doctors have even said that it’s all in my head and told me to see a psychologist. But I KNOW it’s not in my head - I physically feel ill every day. A few people have mentioned to me over the years that I could very well have Fibro based on my symptoms and when I look up the symptoms and read the forums, a lot of what people complain about matches my own complaints. I want to see a Rheumatologist, but I just got a new PCP (internal medicine) and he wants to runs a bunch of tests, including a sleep study, so I’ll see what he comes up with first, if anything. In the meantime, I’ll explain my symptoms to see if anyone can relate, and if I should in fact see a Rheumatologist next.

I intially started feeling unwell in high school (2011) after an infection lasted a month and took three types of antibiotics to fight. I woke up one day feeling completely out of sorts. I couldn’t think straight, and I didn’t feel “here” cognitively. I felt like I was in a dream, that despite everything going on around me, I did not feel a part of it. This feeling lasted for months with no relief. I progressively started to get worse - my short-term memory was going, I was drawing blanks during conversations, staring into space a lot, my speech was beginning to slur, and my reflexes were practically non-existent. I didn’t learn to drive until I was 22 because I felt so bad cogntively that I knew it was unsafe for me to drive.

Along with this, I began to have extreme fatigue, needing to sleep for half the day to function even the slightest bit, as well as weird pains/sensations in my back that I can’t describe that well. It wasn’t exactly muscle pain, it was like a constant tingling/electricity feeling (maybe in my nerves?) mixed with severe tension, but it was enough to make me feel like utter garbage and to want to sleep the day away.

On top of all this, I was no longer getting a menstrual cycle. I had my hormones checked and they came back normal. Doctors could not explain why this was happening, but they put me on a progesterone pill anyway (which worked). But I sometimes felt like the lack of a menstrual cycle was somehow connected to whatever else was wrong with me.

During this time I had two EEGs done and both showed abnormal brainwaves. 3hz polyspikes post hyperventilation according to the reports. The neurologist seemed to think I was having seizures (the kind without convulsions) so I was admitted for a week into an Epilepsy Monitoring Unit. They tried everything while I was in there, but nothing lessened or exacerbated these polyspikes, so I was declared “not epileptic” and sent home.

I also had an MRI done that showed a 6mm microadenoma in my pituitary gland, but nothing was particularly made over about that, nor did any doctor say it was a cause for concern or related to my symptoms so I was once again dismissed.

Every blood test I had done came back normal. An ultrasound of my thyroid, and an allergy test, both came back normal, too. It seemed every result was proving more and more that I was crazy rather than actually sick. I became depressed from this and eventually gave up trying to see doctors. I went about 4 years without seeing any specialty doctor or having further testing done. However, I did try a chiropractor and an acupuncturist in the hopes thaf it would help, but it did not. I also tried getting braces to ease the discomfort of TMJ thinking that that was the solution (because an article in a magazine I read showed that a woman with similar symptoms was magically cured after treating her TMJ). It did not help either. I also tried different diets and supplements but it was all for naught. Exercise did not help either, in fact, after months of actively going to a gym and having a trainer, I still felt weak and had little energy. I eventually stopped going.

Fast forward to today and I am still sick but feeling worse than ever. I have the same sensation/pain/tension in my neck, upper and lower back. It feels as if poison is running through my body. I also have a constant achey pain in my knees. My legs and arms sometimes feel so heavy I can’t even lift them. I also have restlessness in my arms and legs, too. The fatigue is just as bad as it was then, I can hardly stay awake during the day. Sometimes I feel like I’m just going to collapse from the exhaustion. I have zero energy and am very weak. It’s an effort just to lift groceries from the car to the house. Sometimes I feel so sickly that I barely have the energy to speak. My mom thinks I’m lazy but I truly have no energy or stamina to do anything. I still have trouble thinking straight, I forget what I’m thinking or talking about constantly and need to have things repeated multiple times in order to retain anything. I even have to go through a checklist every morning to make sure I did even the simplest of things, like putting the proper clothes on or brushing my teeth. I still have no menstrual cycle, and am still without answers.

The thing I hate the most about this is that my quality of life has gone down dramatically over the years. I can hardly keep house or hold a job, and I can barely make the effort to go out and do anything fun for myself. When I do, by the end of the day my body feels horrible and I am completely exhausted.

Based on what others have stated experiencing, it sounds like Fibro or CFS could be a possibility for me, but I’m worried that once again, I’ll not get any kind of real diagnosis and I’ll continue to suffer. I’m hoping my new PCP will find something others did not, but I still feel like a Rheumatologist should be the next step for me. Do you agree?
 

1sweed

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Welcome Freckled Kat, While your symptoms do fall in line with a bunch of the fibro health issues, we can't say for sure you have it or not but we are willing to try and answer your questions and provide emotional support and daily living tips. One thing you mentioned about what doctors to see, and at this time I think you should follow the lead of your new PCP and see if he comes up with anything.

When I was in Florida, I went to Cleveland Clinic and was not impressed. I saw the neurologists and was told I should do the Epilepsy Monitoring Unit, as well. But due to lack of insurance and money I did not have it done. However, I was having the same symptoms and odd things going on and was later diagnosised with complex partial seizures (the kind without convulsions) by another neurologist. Once I was given medication most of my symptoms stopped. So you might want to get in touch with the Epilepsy Foundation of Florida, and see if they can help you.


Otherwise you can have more than one illness at a time and so the different symptoms can cause many different reactions within your body. But as I tell most everyone the most important thing you can do for yourself is to manage each symptom on it's own merit. Meaning start a journal and list your problems and any new problems that come up. That way if you see a new doctor or go to a appointment and get brain fog you will have it all written down. We all know that feeling of going to the doctor and our mind goes completely blank and of course you are luck if you get more than 15 minutes with any doctor anymore.

When you see a doctor try to stick with the things that bother you the most. Let the little things go for a while or other wise docs tend to see us with a shopping list of complaints and either think we are looking for drugs or just hypochondriacs. I as well as many other members have been rudely tod that it was all in our minds. So your not alone in that.

If all your tests are normal then another suggestion is to stop running from one doc to the next. Your tests are normal at this time and may stay normal and until something shows up the docs consider you to be healthy. So save your self some money and start managing symptoms at home.
Do you have a comfortable bed? If not get a thick foam pad to provide extra cushioning for your body. Are you able to eat healthy foods? To avoid eating too much sugar or unhealthy snacks. If your having pain in legs at night wear socks to bed and throw an extra blanket over your lower legs and feet to prevent leg cramps and be a bit warmer in that area.

Try to avoid direct contact with your air conditioner as the cold air can cause muscle pain. Avoid stress as much as possible, rest and relax as much as you can, as anxiety alone can cause loss of menstrual cycle. If you find you are really upset with lots of worry and anxiety go and talk with a counselor at one of the many mental health centers in your area where they bill on a sliding scale which means cheaper then most places or talk with a pastor at a church. In other words no your not crazy but we all need help once in a while and it can ease your mind to talk with someone who can be objective about your mental and physical health.

As you gain control to a point over some of your symptoms you might feel better in regard to your overall health. Other ideas take warm baths with ebson salts in water as it helps with muscle pain. Run a blanket and wrap yourself in it when muscle pain is at its worst. Try and enjoy life by watching funny movies as laughter is good for the soul. Take up a new hobby to take your mind off your pain.

Most of all come back here and share with us and try to be an active member and we in turn will try to help answer any questions that you post around the forum. Also answer other posts with how you have coped over the years as your answer may help someone else. Look forward to your replies. :)
 
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