Suspected Fibro Dx

[tarnalberry]

Ugh...

I am of two minds of posting this.

So, when I come to report back that my appointment went well, the doc took a full history, went over the almost entirely complete set of lab work my GP had run, and did a few manual exams during the appointment to come to the conclusion that I do, in fact, have a budding case of fibro, I don't really want to argue the point.

I've looked up the differentials for fibro and lyme (and CFS, btw) and I know my history. Quite frankly, I think it's far more likely that the chronic stress of the past year and a half that has had little to no outlet and which has left me, nearly daily, in a fight-or-flight response, has taken it's toll, and I've gotten into a dopamine depleted state that my already well-tuned CNS now gets more pain signals from. It doesn't help that I've been known to be dysthymic for years (at least, thanks to a number of situational events strung together), which may be affecting serotonin and norephinephrine levels beyond what the increased adrenaline and dopamine-depletion chemical cascade might affect. Now, the pain signals from my hypermobile (and always have been) joints are 'louder', if you will, as are all the rest of the sensory inputs going to my brain.

I think all of that is far more likely than the odds of coming across a tick, in an area that doesn't have all that many, that is infected with a disease that doesn't infect all of them, and being transfered that disease, which doesn't happen in all cases, and not noticing the bite or initial symptoms which happen in most cases, and developing a chronic form which doesn't happen in the majority of cases either.

For me, for my case, the long stack of odds in the lyme case doesn't pass muster against the short odds in the stress induced case. (Can you tell I'm stressed yet! ) So, for *my* case, I am moving forward as is. I will not forget what you guys have taught me about lyme, and if I decide in the future that I need to investigate it more, I will. But I also don't want to be reminded/chastised/belittled/pitied/whatevered on this decision at this point. I disagree with some of you guys on this front, and I don't want to argue/debate the point. (No, space aliens have not taken over my body. ) I think we can respectfully disagree on this one.

As for this appointment and moving forward...

* The first thing she wants me to do is have a sleep study done. Woo. I'll do that.

* She also wants the dysthymia treated. She seemed... displeased to have untreated 'depression' on her hands. I'm absolutely unwilling to go on meds without also being under the care of a psychologist or psychiatrist (and "under the care of" does not mean "sees once every two months"), and I may want to investigate the dopamine agents for treatment prior to an SSRI or SNRI as I think I've dealt with the dysthymia fairly well without medication.

* It looks like my GP may be my primary on treating the fibro. I'm not sure how I feel about that. I have a good rapore with him, and I think he's relatively up to date on things (and I might be able to discuss those things in the previous paragraph with him), but it's not the same as someone dedicated to it. I will be thinking more on this.

* That's it for now. I still don't have anything worked out as far as FMLA for work, as this doctor seemed worried I wanted to go on disability (NO!, I want to remain working full time). That needs to be addressed, probably with my GP at my next appointment, to be scheduled tomorrow.

[tarnalberry]

Tiffany,

I was wondering if these are the biological findings you are talking about ?

I only copied in the part of the article about fibro and tartaric acid. I have to look up the other acids still ...

no, I was referring to decreased serotonin levels, increased levels of substance P, alpha-delta sleep disturbances, and - apparently - decreased dopamine levels and decreased ATP supplies in the muscle fibers.

[Fiddle-Faddle]

The only thing that keeps me from investigating Lyme for me is that the one "episode" (they told me it was cellulitis) that might have been Lyme-related 20 years ago was treated with 3 weeks of antibiotics, and I've never had any other symptoms since.

But if I had a dx of fibro, I would want to rule Lyme out before considering treating the fibro, partly because of having read so many pages of the OMG thread, where Rachel was in total denial of Lyme for pages and pages--but it turned that she (and so many others on that thread) really do have Lyme, even though they are not at any more risk for Lyme than you (besides for symptoms).

I'm not saying this because I want you to change your mind and rush out to get tested by Igenix. I'm just hoping you'll store what I'm saying along with all the other Lyme info in case you need it someday.

Either way, I wish you good health ASAP!

[Matilda]

...

[tarnalberry]

Hi Tiffany,

I'm sorry.

As far as the depleted neurotransmitters go, you do sound thoroughly pissed off. I don't know which comes first. I hope you feel better soon.

Matilda

ugh, I'm sorry. I was aiming for stressed-in-my-own-life, not pissed off (because I'm not pissed off). I tend to talk quite quickly, and string long sentences together, so if you haven't heard me speak face-to-face it might be very easy to read it as something other than the way I mean it when it's written out just the way I speak it.

sorry.

[Matilda]

...

[marciab]

no, I was referring to decreased serotonin levels, increased levels of substance P, alpha-delta sleep disturbances, and - apparently - decreased dopamine levels and decreased ATP supplies in the muscle fibers.

Tiffany,

Sounds like you've done your homework on this one. I still have to look up substance P, but I'm familiar with the other things you're talking about. So, maybe I can help a little ...

I had a sleep study in 1990 and found out I had nocturnal myoclonous (sleep disorder). This went away on this diet, but comes right back if I get any gluten what-so-ever. Not saying you have NM, but it's a thought. Over the years, I learned that lack of sleep determined how much pain I would be in.

I don't know if you've seen this. Dr. Sarah Myhill has an excellent article on mitochondrial dysfunction / reduced ATP. I only copied in a small part. IMHO The whole article is well written.

Open Original Shared Link

CFS is Heart Failure Secondary to Mitochondrial Malfunction

By Sarah myhill, MD

EXPLANATION OF THE FATIGUE PROBLEMS IN CFS PATIENTS

Energy to the body is supplied by mitochondria, which produce NAD (nicotinamide adenosine diphosphate) and ATP (adenosine triphosphate). These molecules are the

[tarnalberry]

Tiffany,

I was talking English, not American, meaning "Urghh", not "Aargh", and "I don't feel good", not "you're not good", but if my impression is wrong, even in translation, then I was probably just being a lazy reader.

You just seemed like you have a lot on your plate and this new pain is too much, and I was empathising. Blimey, I know you're tough.

Best wishes,

Matilda

oh, goodness that gave me a smile!

I thought that you thought that I was angry about a post on here, when I totally didn't catch any American/English usage. (Which is funny, because I sometimes use British slang for swearing, though I've spent all of 10 days in the country. Guess I watch too much BBC. )

And these sorts of miscommunications just make my socks giggle.

[tarnalberry]

But if I had a dx of fibro, I would want to rule Lyme out before considering treating the fibro, partly because of having read so many pages of the OMG thread, where Rachel was in total denial of Lyme for pages and pages--but it turned that she (and so many others on that thread) really do have Lyme, even though they are not at any more risk for Lyme than you (besides for symptoms).

I am, at this time, satisfied with the level of testing I have had done for lyme which has come back negative. I will keep what I've learned in the back of my head, but I don't feel like the possibility has been ignored either.

[Rachel--24]

Tiffany,

I totally respect your decision and I've been posting on this board long enough to know that you are very capable of making the best choices with regards to your health.

In no way would I ever belittle you, chastise you, pity you, etc. My only reason for posting is to offer information that might otherwise not be known.....and as you said...the info. is there if you ever need it. Thats all I could ever hope for when I post stuff.

It sounds like your appt. went well and that you'll be moving forward. I hope you'll get positive results from your treatments.

I'm sure you're probably aware of this already...but in case you're not I wanted to recommend the low-oxalate diet. Eliminating high oxalate foods has helped alot of us to reduce imflammation in the body. Its also used for treating vulvodynia.

I notice significant improvement when I avoid high oxalate foods. I had been avoiding these foods for awhile now....but I was not aware of the oxalate link until recently. I only knew that these foods worsened my pain. I did some research on oxalates and it makes alot of sense to me considering the issues I'm currently dealing with.

I know this diet has been helpful for other board members as well.

Good luck with everything....take it easy and try to let go of the stress (I know...easier said than done )

[Rachel--24]

I would want to rule Lyme out before considering treating the fibro, partly because of having read so many pages of the OMG thread, where Rachel was in total denial of Lyme for pages and pages--

Me...in total denial??

Yeah....I suppose I did go back and forth in my mind (and in my posts) for quite some time. Its all settled now....I'm OK with everything.

[tarnalberry]

...

In no way would I ever belittle you, chastise you, pity you, etc. My only reason for posting is to offer information that might otherwise not be known.....and as you said...the info. is there if you ever need it. Thats all I could ever hope for when I post stuff.

...

I'm sure you're probably aware of this already...but in case you're not I wanted to recommend the low-oxalate diet. Eliminating high oxalate foods has helped alot of us to reduce imflammation in the body. Its also used for treating vulvodynia.

...

I know no one here would intentionally be a meanie-head (five-year-old-speak intended ), and I do appreciate the information. It's in the back drawers of my head.

I've tried the LOD before - years ago, for vulvar vestibulitis. It didn't make any difference for me for that. I'm probably not going to try it any time soon, as inflammation isn't one of the issues I'm dealing with right now. (That's one of those distinguishing features - fibro generally has no inflammatory response found, just the pain. Good news for continuing to get exercise - you don't damage yourself, but not so much on using anti-inflammatories for the pain.) I may consider it in the future, depending on how other approaches go.

[Judyin Philly]

hi

so glad you posted and that the apt went so well for you.

I'm so glad that they want to do a sleep study. I had one done and have severe sleep apena. Using the CPAP machine and mask (tho not the most beautiful sexy thing to wear to bed ) increased my energy and decreased my fatigue. It really helped my fibo pain also b/c i was getting restorative sleep again.

good luck and keep us posted ok?

Seems like with all the research you've already done and this dx good times will come. Stress is a real b....... and can take it's tole on us.

hugs

Judy

[tarnalberry]

I suspect that the sleep study is unlikely to find anything terribly remarkable - maybe something slight, but nothing big. My husband hasn't noticed anything obvious (and I've asked him to look) despite the fact that he often comes to bed at a later time than I do, and I'm 'fast' asleep when he comes into the bedroom. But not everything is noticeable by the untrained eye, or the eye at all, so I'm interested to see what they find.

[Generic]

I'm coming into this thread kinda late, but here goes. I was diagnosed with celiac 19 years ago, was diagnosed with fibro in 2002. I have been tested for lyme, done the elimination diet etc. I have fibro and CFS I have ALL the symptoms.

I was officially diagnosed with fibro about 6 months ago by a rheumatologist. He was very savvy on all the up to date info on fibro. He explained that they don't know why people get it. Yes, more women do get it. The latest findings are people that come from some sort of dysfunctional family or have had a traumatic event happen to them seem to have it. They believe that the pain filters in your brain don't work so well. They don't know how to filter out all the pain.

He explained it like this. He was at a convention, the speaker asked how many people were currently having pain. Only a few raised their hands. He then said I can't believe that more of you aren't having pain. Those chairs are horrible, they have no cushions. I know if I was sitting on one of those chairs my butt would be killing me. He then asked again how many of you are in pain? That time around over half the audience raised their hands. Most people just don['t notice pain like that until it is pointed out to them.

With fibro the brain filter seems to be broken. So we feel all the pain and it seems to be more intense. He also said that it is possible the insulation on the nerves (myelin sheath) SP? is damaged.

As for the sleep, you are tired all the time, 1) from the pain, 2) having fibro you don't go all the way into the deep sleep cycle of sleep. (can't remember which one that is). They say your brain almost has constant bursts of being awake, so you don't get restful sleep.

Stress makes it worse, exercise, acupuncture, massage therapy and getting good sleep helps. I take ambien on and off to get good solid sleep. I also am on gabapentin (generic name, not sure of the brand name). It was approved recently by the fda for treatment of fibro. I hate taking pills, but it got to the point of me not being able to function. I tried more anti-depressants than I care to remember. The gabapentin is like a miracle drug for me. It has given me back my life, I am also back to a normal life.

I hope this info will be helpful to you. Good luck in getting it under control.

[Mtndog]

Tiffany- Keep us posted and hope that you feel better! Stress can really wear you down. Best, B

[lily53]

Hi I'm new here but may have some information for you. I have thyroid disease, Celiac,fibromyalgia, Osteoporosis, Atrial Fib, Sarcoidosis and am presently looking in the face of autoimmune hepatitis (talk about awful meds!) I have to really pace myself. I found some really good information about Fibromyalgia when I did a sleep study with a sleep clinic in the Chicago suburbs. They recommended Xyrem. A very new drug. It took me awhile to start it but when I did I found it absolutely amazing. I felt SO much better. I am presently working with my cardiologist and sleep doctor to find a better dose though. It is bothering the atrial fibrillation I have as a result of Rheumatic Fever (another autoimmune disease) as a child. But I would really check out a sleep study and see about this. I know you don't want to take meds but this works so very well. Good luck! Lily

[Judyin Philly]

I suspect that the sleep study is unlikely to find anything terribly remarkable - maybe something slight, but nothing big. My husband hasn't noticed anything obvious (and I've asked him to look) despite the fact that he often comes to bed at a later time than I do, and I'm 'fast' asleep when he comes into the bedroom. But not everything is noticeable by the untrained eye, or the eye at all, so I'm interested to see what they find.

WELL THAT'S A GOOD SIGN IF HE COMES TO BED LATER THAN YOU AND YOUR NOT SNORING OR STOPPING BREATHING...........ALL GOOD.

AGREE.........MANY KINDS OF SLEEP DISTURBANCES THAT THE MACHINES COULD PICK UP.

JUST GLAD YOUR RULING IT OUT.

HUGS

JUDY

[happygirl]

Tiffany, I'm happy that you have a good doctor and am moving forward, but I am certainly sorry that your body is in the state that it is in....no fun for you.

I'm not sue if you've tried accupuncture, but many people with chronic pain, including fibro or fibro symptoms, have found some relief from it. As with anything, you need a good accupuncurist, etc.

Someone earlier mentioned the supplement "l-carnitine"....my dr. recommended it for my muscle pain as well.

Hot baths help---temporarily---but still help.

Good luck and I hope you find some relief.

[sixtytwo]

Also new to this thread, but it is exactly what I have been wanting to weigh in on. I was dx with fibro first and then celiac six months later (through Enterolab). I guess I had been doing so well, that I had been thinking that maybe I don't have fibro anymore (taking Mobic for pain daily)..........SO (SILLY ME) I got careless with the gluten intake, which is something I thought I would never do. It had been three years of being gluten-free. Got away with it for awhile and then BAM.........I was in so much pain one night and really suffered. I did my own VERY unscientific test, but it really was plain to me. The doctors may not realize that a thyroid condition (which I also have), fibro and celiac are all in hooked up, but I am here to tell them that they are. This has been interesting reading and I am not into the lyme's theory as I don't have that, but the fibro/celiac/thyroid thing will come to be known by doctors soon as going hand-in-hand, I think. I am going to point this out to my doctor when I have my check-up in November. I think I am also sensitive to white sugar and I have not seen that mentioned in this thread, but it has been talked about in others/also food with flour in it, even the gluten-free kind. I do much better without them. We just have to figure it our for ourselves and then stay with what we know. Barbara