Not sure where I belong - can't get an answer from anyone.:(

Hi everyone,

I've been quietly lurking for a while. My nightmare started just over a year ago. Here is my story -

One day last Sept. while meeting my husband for lunch (with our one year old daughter) I started experiencing chest pains. At first I didn't panic. But after a few minutes it wouldn't stop and I went into full blown panic attack. :( I told my husband I wanted to go to the ER to get checked out. They couldn't find any reason for the chest pains after doing chest X-rays, blood work, ekg, ect... I was sent home. For the next two weeks I experienced more chest pains to which they finally diagnosed me with costochondritis. I was in so much pain that I started experiencing TERRIBLE panic attacks. I couldn't sleep. I couldn't eat. My heart was racing constantly. I was having palpitations all the time. In October, I started having sharp head pains every day. An MRI was done on my brain that came out clear. I was told it was occipital neuralgia due to tension. So, now I'm experiencing daily chest pain, sharp nerve pain in my head, stiff neck and shoulders and down my arms. Saying that I was a mess is an UNDERSTATEMENT. I quit functioning. I had no idea what was happening to me. I didn't like leaving my house. I felt like I couldn't watch my daughter because I felt like something was going to happen to me. I had ringing in my ears, facial pain, weird sensations, shortness of breath that came and left. I felt like I was having an out of body experience. It was horrible. I cried constantly. No-one could tell me what was going on. I went from perfectly healthy 35 year old to a barely functioning person with severe anxiety. So, this continued through-out the months. I lost 25 pounds. The neurologist diagnosed me with tension myasitis syndrome or mind-body syndrome. And, my PCP agree's with that diagnoses. He says "no further testing is needed." O_o In January, I started getting terrible pains in both my legs and arms. It feels like someone was hitting my legs and arms with a jack hammer on and off all day. More testing (ultasounds) were done. More bloodwork is done. Everything comes out normal. By Summer my leg and arm pain started to subside but I was left with tingling and numbness where the jackhammer pain left. :(

I forced myself to start living like a human being again. We took our kids to Disney World. I started feeling a little better. Some of my symptoms have gotten better. My PCP offered to get my into a Fibro clinic to do a treatment program. I only got into half of it and had to drop out due to my work. I'm a freelancer and Summer time gets really busy for me.

So, right now this is where I am at symptom wise -

Occasional sharp jabs of pain anywhere in my body, occasional chest pains, occasional tingling in arms and legs, strange "nervy" sensations through-out my body (that's the WORST), body limb jerks when I'm resting (these come and go), anxiety, neck tension and tension headaches. I am not 100% by any means but I am FUNCTIONING and it's an improvement from one year ago. I feel sad a lot. I'm really trying to get my life back and am scared that I will never feel "normal" again.

I did go see a homeopathic Dr. this Fall who performed muscle testing on me. She thinks it's Lyme but she also does not "believe" in Fibro so I took her diagnosis with a grain of salt. I was tested for Lyme in my Dr.'s office last winter.

So, I have cut out gluten, dairy and sugar. I swim and also do hot yoga, too. However, I still have many days with lot's of symptoms. I never know what each day is going to be like.:( I feel so bad for my husband. He is very supportive but feels helpless. I don't know what else to do or who else to talk to. Does this sound like Fibro or should I press harder to get a Lyme diagnosis? I feel so lost.

If you made it this far - thank you for taking the time to read.

:)

We have recently learned that my daughter has RND-reflex neurovascular distrophy. I don't know the details about it for adults, but I believe that adults can get this as well. I think it may be more common for children. Check it out and see if maybe what you are describing sounds like it could be that. I don't know the difference between that and fibromyalgia either. Just saw this and had to mention it. I have fibro so I know it is NOT fun. But, good luck, and I hope you get some answers. Good for you for figuring out how to still live life! With RND they say that is the best thing you can do. The less you do, the worse you'll feel. Oh, also I have chosto, it is soooo painful!

I get the muscle pains in the chest area too, and ribs. I found that when it happens the best thing to do is relax as much as you can. It does go away, but it can be pretty scary and painful. Mine only lasts a few minutes and they subside, as long as I relax. If I fight it, it seems to take longer.

I would stick with the doctor that believes in fibro. It sure does sound like you may have it. In the beginning it was the worst for me. I think it has settled down some. But I sure can relate when you said you never know what kind of day it is going to be. It gets very difficult to make plans when that happens.

Take it one day at a time, try to relax. It is a lot easier to contend with that way.

Hugs, Karen...

Karen, yes...learning to relax when these symptoms come on has been very helpful. There are still times that I struggle with it but I've found things that help take my mind off the symptoms like baths and neck/shoulder massages from my husband. Also, getting out of the house and being functional seems to help too.

Joy, I was seeing a therapist when enrolled in the fibro treatment program and she was very helpful. Unfortunately, our insurance is not that great so I have not seen anyone since I left treatment.:(

One of the things that helped me was an 8 week class in MBSR- Mindfully Based Stress Reduction. It's curriculum is mostly meditation practice and a little yoga. My naturopath sent me to it. She says that many times, you don't feel stressed, but your body does with many different medical conditions. These classes should be available in a lot of cities. It might be worth checking out for you.

I do hope you get some help from the Fibro Treatment Centre. Many of the symptoms you have I have had also. There is one really dreadful pain that starts in my back and makes its way to my chest. It is disabling. I have to sit very still and take deep breaths until it stops. It has happened outside when I was trying to do something in my garden. Other times I have been in bed and sometimes I woke up with the pain. My Nurse Practitioner said it might be a muscle spasm. Touch wood, it has not happened for quite some time. When a pain stops you don't think about it and move on.

I do get hand numbness and tingling in my hands. I got bad nerve spasms and restless legs when I came off Lyrica. The medication might have been masking them. Nortriptyline has stopped them.

Yes, I agree, there is a lot of scary stuff online.

I so hated when my Doctors told me, 12 years ago, that I have chronic pain. I could not believe that there was not some magic pill in their medicine bag to make it all stop. I had to stop work but I am still living in some way. I do have enjoyment in my life, despite the pain.

Take care.

Loring

Osteoarthritis in Multiple Joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...

Do you sometimes feel like you can't get a good breath in? That happens to me alot...I am breathing normal but find it hard to get a good full-filling breath at times...does that make sense?

Makeup- yes journaling is very helpful. I know people that do blogs too. Meditation is my helpful tool. I am very spiritual and love to listen to worship music. I get to church even if I feel bad. I feel this is very helpful and great distraction fom the pain. Volunteering can be great to be helpful to others especially during the holidays. It gets me out of pour me syndrom I get sometimes. Lol

She is right. If it is costo. I get the same thing Mojave. It is muscle spasms in the chest area and ribs. I find when I bend over wrong or turn wrong, it happens. I know people can have chest pains with anxiety, but this is different. It is in the muscles. I think she is experiencing the same thing.

Have a good day...

Hugs, Karen...