Is Fibromyalgia an Inflammatory Illness?

@Sherrine

I'm pretty sure I saw an ophthalmologist 4 or so years ago, and not an optometrist. I saw him at a hospital... Since its been awhile and I have a few more floaters since then, I've considered going back but I guess sometimes I'm nervous to hear bad news and so as long as my vision hasn't changed drastically I've just tried to find peace with it.

I try to be cautious about preservatives and additives but I need to be more cautious and less lax. I know I need to start doing a food journal. Recently I've made an 'allowed' and 'not-allowed' list... a list of foods I know cause bad reactions.

I do notice that my eyes are more likely to be sore or hurt during Fibro-fog phases and sleep-deprived phases, and I think this could be muscle related. I also believe that that muscle tension that affects us sometimes affects my facial muscles and that that could be influencing the eye pressure or pain. Its hard to tell sometimes what's causing the pain/sensations. haha.

I think you are right about having to be a detective. I don't like making assumptions but at the same time I also sometimes have to be a co-doctor to know which direction of medical professionals to go in. Hopefully you find what you need to with your bone health. I'm happy that my detective work helped my low back problems 5 years ago. I found out the cause of my problems from my research online.. so that I could find the best specialist to help me.

My two main issues right now are this recent batch of headaches I've had the last month (with accompanying eye pressure) and the fact that I am considering getting married and having children (They are one in the same since I know my partner wants children very badly). I've been hesitant to think about having kids because of all of my issues.. and I'd still like to know why my menstrual cycle is different. It makes me nervous that I might have trouble conceiving, or might have complications and I don't want to be locked into a marriage if I can't help my partner's dreams come to life, literally and metaphorically. I'm scared that if I go to a reproductive endocrinologist, my insurance might deny it since I have a private policy. Should I just go to a regular endocrinologist? To this day, no doctor has been able to tell me why my period suddenly changed in my mid 20's when my FM symptoms started.

I may have to think about seeing: An allergist, an endocrinologist, and maybe another ophthalmologist. I've never seen the first two on the list.

Thanks for your feedback!

You have mentioned your eyes quite a few times on the forum. I think you need to get them rechecked by a specialist...the opthamologist. That will take some stress off you and help with pain. It might be absolutely nothing and you could be worrying for nothing, too.

Many women have irregular periods. That shouldn't interfere with having children. I had Crohn's and back problems when I had my children and they were young when I developed fibro but everything went well. I did have two miscarriages but that wasn't due to anything I had. That just happens when the baby isn't developing correctly. But I was blessed with three wonderful children.

I have a friend who tried to have children for quite a few years and ended up adopting. The week they were going to court to finalize the adoption she found out she was pregnant! She had a healthy baby and went on to have another one...now she had three beautiful children. Adoption is always a possibility.

You do need to stop projecting yourself into the future. No one knows what the future holds. You are putting extra stress on yourself doing this. Instead, start developing a positive outlook and look forward to the great life ahead of you. Getting married? Now that's exciting. I'm happy for you.

Liz, I've seen that list before. I have sensitivities to MSG but not to everything on that list...like gelatin. You just have to see how your body reacts and everyone is different. That's where the food journal comes in handy.

Sherrine

@Sherrine,

Thanks for sharing those stories with me. Its encouraging to hear that. For some reason ever since having health issues this has always been a big fear of mine and has affected the way I approach my relationship. I'm just afraid I'll come up short, and I have a fear of making a commitment I can't keep or will resent being in. Marriage is such a big deal to me, and I'm not the type of person to commit to something unless I feel secure.. The fear that I won't be able have a child makes me feel less secure about making a lifetime vow. I've been considering seeing a therapist because I'm hung up on this issue. In the past I would just wallow and cry thinking I'm too 'sick' or broken to have a child. I didn't realize how messed up my thinking was on this issue until the last year or so.

Charm, I think your boyfriend is marrying you because he loves you..not so you can produce a child. If he's marrying you just to have a baby, I wouldn't get married.

But I think he wants to spend the rest of his life with you and you have to feel the same way about him. If children come along, wonderful! If they don't you can adopt a child. You would love them as much as if you gave birth to them. After all, raising and loving a child is the true meaning of motherhood and being a parent.

Sherrine

I have seen people on this forum tell others that fibromyalgia CAN'T cause inflammation, that if someone has any inflammation they must not have fibro or else they must have another unrelated condition in addition to fibro, etc. I object to those kinds of statements because:

1) According to studies a lot of people with fibro do have inflammation that hasn't been attributed to another disorder. In addition, it's also widely accepted that many people with CFS have inflammation but there is disagreement in the medical community as to whether CFS and fibro are even separate disorders or are in fact just 2 slightly different expressions of the same thing.

2) Fibro is not a disease per se, it doesn't "cause" or "not cause" anything, it is simply a "syndrome" - a collection of symptoms where no other cause has been detected. We have no idea what causes fibro.

The correct thing to say would be that inflammation is not part of the fibro diagnosis, that it is not necessary to have inflammation to be diagnosed with fibro, and that there are many people with fibro with no inflammation detected (note that that doesn't necessarily mean someone has no inflammation whatsoever, just that none has been detected). The symptom lists for fibro are constantly evolving. The symptoms needed for diagnosis are not exclusive, it does not mean any symptoms not listed are not fibro and nothing to do with it. Some lists of symptoms of fibro do list inflammation, most don't currently. So one could say that too, that "inflammation is not usually listed as a symptom of fibro".

I think it would also be fine to say that if someone has inflammation that that should be further investigated in case a cause can be found. But to say someone "doesn't have fibro" if they have inflammation, like I've seen people say, doesn't seem helpful to me, nor to make bold pronouncements about what symptoms definitely are and aren't fibro or what fibro definitely can and can't do - we don't even understand what fibro is! How can it have such strict rules?

This reminds me of the pronouncements that certain people make that "fibro can't get worse over time". I think that comes from a misunderstanding of what is meant when certain doctors say fibro is not a "progressive illness".

Post Edited (Pelagicdancer) : 6/10/2013 12:52:24 PM (GMT-6)

getting by said...
I think too it depends on the individual. Some people tolerate pain better than others. I have a high pain tolerance, I can keep going in spite of the pain. I think that is why some people think some of us don't have pain. But it is there, for real...

Oh yeah, I think we can (at least partly!) get used to being in pain. It's so frustrating because people don't realize the severity of our pain just because we're not constantly complaining about it or crying or unable to move. We have to learn to live with pain in order to be able to function at all. That doesn't mean it's not there or that we're exaggerating it! If an average healthy person could feel the pain that a person with fibro feels even on a normal non-flare day I bet they would not be able to handle it. I wish there was a way to communicate pain like that! Then doctors would take us more seriously! :)

Some of us can adapt to chronic pain more easily than others, and for some of us it takes a long time and a lot of effort. I have had to do a lot of hard work on the way I think about pain. But I do think we all get used to pain somewhat in that a certain level of pain becomes our new "normal". Of course I'd rather not have it than just get used to it!

Pelagicdancer,

I don't think anyone meant to say that if you have inflammation, you can't have Fibro. Many people here have both (I don't - although I probably shouldn't be attracting the evil eye this way ;) - it's just that as far as they know, the inflammation is being caused by something else...of course, as you said, knowledge is constantly evolving. We have to do what we can with current knowledge.

I was thinking about what you said about functioning even though we're in pain. How true - what choice do we have? A chiropractor told me 20 years ago that I must have a high pain tolerance because my sacral joint was locked down tight, yet I was still doing everything it took to be a mother of 3 young kids. (That was refreshing! Most people seemed to consider me a wimp.)

To be without pain...a sweet dream

Debbie