Newly diagnosed ( sort of)

I have been ill since I was 27. At 34, my obgyn said she thought I had lupus and offered to send me to a rheumy. I declined. At 38, a move made my symptoms worse the climate change was tough and I was sent to a neurologist by my family doctor for "probable MS.".. It was determined that despite two lesions, they were not MS lesions and I was MS free. During the next several years, my symptoms came and went.

I of course, thought I had MS and told my family it was only a matter of time till I was diagnosed with RRMS. Finally the fatigue, pain, brain fog, rashes, etc became way too much to bear.

I was sent to a local university hospital. I have been diagnosed with Mild Cognitive Impairment, so I went to memory clinic. I was diagnosed with a rare form of early dementia and told within seven years I'd likely be dead.

It was a mis-diagnosis.

During all the poking and prodding I did have a positive ANA, ( low) so off to a rheumatologist I went. She told me she did not think I had Lupus, and instead diagnosed me with low vitamin D as the cause of all my woes.

I went on vitamin D still having issues, she threw a fit with another paitient in front of me and her staff quietly suggested I find another doc.

I went back to my old neurologist, he explained everything stems from a head injury( car accident) suffered years ago. Silently wrote fibro on my chart, and continues to treat me b/c of my cognitive problems.

I found out I had fibro from my Long Term disability company. They are trying to stop my payments because they consider fibro a "temporary" condition. Fortunately, my doc believes that my cognitive issues ( very bad) might be early dementia as I have speech issues fibro paitients do not have.

So, I get to stay on LTD for now.

I am sorry this is so long. It has been a long battle to find out what is wrong. I feel so sorry for all of us. I've been labeled crazy, major depressive, possibly thought of as a hypocondriac, spent thousands on medical testing for aches and pains that were "nothing". Of course my doctors did not understand why still insisted I hurt. Nothing was "wrong".

I am so grateful to have my current doc, he is not a pill pusher and while not a specialist in the disease he is caring and compassionate -- and with this diagnosis it goes a long way.

I am grateful to find this forum as well. good luck and love to us all.

Hi. Txcola, and welcome! You sure have been on some journey! I can't believe some of your doctors and I REALLY can't believe your insurance company! No where have I seen that fibromyalgia is a temporary condition. Doctors don't even know what is causing it but they think it's a neurological problem. That definitely would not be temporary. When you first open the thread Fibro 101 that Karen directed you too, you will see an interview by Dr. Clauw. He's one of the leading doctors studying fibro and he explains what they think is going on with is....in plain language, too. You will find this interesting.

Speech problems...we have fibro fog and some do have speech problems. It is a cognitive memory problem. Try googling "fibromyalgia and speech problems" and you can read things there and see if this is what you are experiencing. Your doctor may not have seen this in fibro patients but apparently it does exist.

I use some supplements that help with all of this. I take malic acid/magnesium supplements, vitamin D3 supplements, CoQ10, and folic acid...which helps with memory. There are links in Fibro 101 about the malic acid/magnesium supplements and vitam D3 and how these work in your body

I also use ibuprofen with food, Tylenol, and a prescription muscle relaxer. These do help me be in control of the pain. We are all so different in what will work for us but I'm sure others will let you know what helps them. It's a trial and error processes but you can find what helps you the most.

I also do gentle stretching exercises and I walk daily as my form of gentle exercise. I also swim. I pace myself when doing things, too. All of this helps me be in control of fibro and not fibro in control of me. I have had a full and enjoyable life in spite of this illness.

I think you have come to the right place. You can get a lot of help on this forum. I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Good to know the speech problems are part of the fibro. It can be incredibly infuriating. I have developed a sign language of sorts with my kids. With other people it is embarrassing.

I belive docs do not tell us as a test. Some of them might not entirely believe in this disease, and want to see if we are "making up" symptoms. With the internet, I am sure there are a lot of people who come to them believing they have diseases or conditions that they do not.

I never once considered fibromyalgia. I firmly belived I had MS for years, and for a while possibly lupus because of my positive ANA. It is still hard even now to make the "transistion" to having fibro and "owning" being ill with the disease. As I learn more and more about it, I wonder why it was NEVER suggested during all these years.

Yes, the insurance company ( The standard) is full of baloney. I have been sick since I was 27. I am now 47. It has not gotten better, or improved. I have no medication to treat the disease, so each flare is worse and worse. I have no idea how they can get away with such BS.

I will read the info you guys suggested. Thanks.

I had to give up volleyball for the same reason when I was in my late teens....I would bruise all over my arm and wrists. I was also first diagnosed at 29...interesting.

BTW- How does diet coke help? Wouldn't the nasty sugar substitute make things worse?

Welcome txcola! Your story sounds like many of us on the forum. it is sad that we had to go through to finally get a proper diagnoses. I am glad you found some great Dr's to help you. I finally have some too after all these years.

I hope you find this site as helpful as I have. It has given me hope and I have got great support here. You might be able to share some things you learn here with your Dr's. Most of the Dr's dont know all this info you get here. I hope to see you around again.