fibromyalgia and questions, questions, and more questions.

Hi.

I was diagnosed in about September.  Before that I had heartburn and am just barely getting off prescription medicine for it.

But I feel so different than even others with fibromyalgia. Will it progress to having it like most others here do?  Is it progressive? Or is there such thing as non-typical fibromyalgia (or do I mean atypical?)

Mine started with a feeling that felt like heartburn in my knees and elbows.  That is the main pain I had when diagnosed.

I take Lyrica and Tramadol.  When I got epilepsy  in 1996 I took a lot of medicines before finally finding one that I didn't become tolerant of within a few months.  All stopped working except Lamictal, my current one.

Will I become tolerant of Lyrica and Tramadol?  My doctor will only prescribe things with Codiene for non-fibro pains.  And that is because OTC don't work so I have to take Tylenol 3 for any pain. Also, if one medicine doesn't work, he is very reluctant to prescribe similar ones.  I can't take Neurontin. That made my head hurt worse than any fibromyalgia pains.  And I doubt he will ever prescribe Savella because of my reaction to another medicine that he said is too similar.

I do get burning pains even with taking medicines. So Lyrica and Tramadol don't stop all the pain. I still get burning ones. They are most likely to stay the longest.  The aching ones go away faster. And at times my left hand tingles. Not asleep but tingles. I'm left handed.

But the other one that remains longer is when my face feels so cold it hurts. My leg above my right  ankle feels that way sometimes. My face more I think.

I am limited to a family doctor because of financial reasons.

I can't take anything that is an anti-depressant because of my reaction to them. Usually opposite of what it should be.  Cylexa made me much more depressed.  Adderall, which is supposed to calm thoughts, made much more hyper at a higher dose. I am on a lower one now and just don't get tired. The bad part of having too much energy and the reason I lowered it was because I couldn't show how I felt when upset or sad. I had this Adderall-induced smile all the time and think I would have smiled for a funeral.   

I sleep ok when I do sleep with self-discipline to get myself to take Melatonin. And I am ok as far as energy in the day.  So I don't have chronic fatigue.  Or maybe Adderall is making it so I don't feel like I have it.

My arthritis is OA and isn't severe.

I"m not bragging. I'm terrified of it getting worse and of the other problems (more severe pain, insomnia, etc). 

My depression started a long time before fibromyalgia. And years before even the epilepsy did.

Is it progressive?  Will I get chronic fatigue? Will I get the other types of pains and will type I have get worse?

I feel so alone in  'only' having fibromyalgia and not having chronic fatigue or RA.  Epilepsy and the others (learning disability, Asperger's (form of Autism) Syndrome, depression, and a personality disorder) aren't related enough I think. Except that with changes of most medicines for other things, I do get more seizures for a week or so after starting it.

And even fibro-fog isn't as bad or frequent as described. The closest thing I have had is what I have experienced before. It's a feeling of needing to sleep emotionally even if not physically tired. It's a feeling of if there is one more noise or other stimuli comes, you will end up screaming or in a shutdown (happens with Asperger's, my body gets paralyzed, my mind active).  So it might have nothing to do with fibromyalgia.

Opinions on my future? 

Pain medicines my doctor might at least keep in mind.  They can't be in the anti-depressant family because I can't take them.

Thanks for your patience in reading this.  I hope someone can help.

 

Yes I would like more information on mast cell problems. I am not even familiar with the term.

Thanks.

And Couchtater, thanks for your reply too.

Is it progressive?
No one really knows, but they think not. Most people diagnosed have a difficult first year, and then learn, as Karen said, what they can and cannot do, what medications help, and what lifestyle they can have. For many people, the frustration of the first year of the learning curve can give way into just something normal. Somedays good, somedays bad.

Will I get chronic fatigue?
No one really knows. There are lots of different opinions out there in the cyber world. Worry about the here and now, and figuring out a way with your doctor for you to manage the condition.

Will I get the other types of pains and will type I have get worse?
No one really knows. Maybe, maybe not. One day at a time--Don't borrow pain trouble until it happens.

Will it progress to having it like most others here do?
Everyone is different, you know, with different illnesses, lifestyles, education and social-economic status, families, no families, tall, short, etc. I feel that for most people, learning how to manage lessens the condition. Of course, when you do not manage, you flare and it becomes worse. There is no one way to approach this condition; It is very definitely not one size fits all.

Is there such thing as non-typical fibromyalgia (or do I mean atypical?)
It is a loose collection of symptoms. There is no such thing as typical with this condition. There are only the symptoms you experience, tied together with other symptoms seen with this condition, and no real understanding of how it comes about or why it happens. There is only typical for you.

Will I become tolerant of Lyrica and Tramadol?
No one really knows. I couldn't manage Lyrica or Cymbalta. On the other hand, I have been taking tramadol daily since diagnosis, with no issues. The most helpful medication I take is Flexeril.

There is no one answer, or easy answer, to this condition. It affects people all over the world, of all races, in all parts of life. Not very comforting, I know. What I find comforting is realizing that I can manage this, and have a good life.

I never did have injuries to knees or elbows. The only thing that might qualify as an injury is having a toe that I managed to sprain. Probably didn't even sprain, just hurt for a few days.