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Confused... do I fit in here?
11 Replies
HerRoyalHighness - August 2

Sorry in advance that this is so long... If I have posted in the wrong place, I am sorry.

I am a middle-aged female who was just diagnosed with FM a week and a half ago. Some trigger point pain can be traced back 17 years to an auto accident that resulted in whiplash.

Three years ago my husband was diagnosed with a life-threatening disease and within several months of that, I experienced sudden sensorineural hearing loss, resulting in single-sided deafness. In addition, that is when I took on the director's position at my place of employment. In spite of the health setback and worries about my husband, we survived and my job, although stressful, went well until about a year ago.

Through no fault of my own, and certainly not as a result of poor performance on my part, our executive director developed a bad attitude and started making my life miserable. It turns out she had two relatives who needed work and she was hoping I'd quit, so they could be brought on. (Money concerns prohibited having all three of us.) When I didn't quit, I was let go. It was an ugly scene, and I have been working part-time positions until I can find something permanent.

This lengthy saga is meant not to elicit sympathy but to set the stage to explain my illness. I realize now that most of my pain kicked into high gear about 3 years ago, and has intensified even more in the last year. I live with constant stress - it's just a fact of my life.

When I read this and another FM forum, though, I think I have things pretty easy. I haven't had to spend days in bed. My back and shoulders hurt pretty much all the time, but it is usually tolerable. My forearms and hands tingle and ache at times, and I have trouble sleeping.

I cannot remember the last time I woke up feeling relaxed and rested. I tend to go through spells where I am awakened throughout the night by pain in my shoulders, hips or hands - then I go for spells when my sleep is just disturbed by multiple times of waking.

I manage to do all the things I need to do, I just pay the price afterwards in pain and muscle spasms. At times, I feel as if minor pain is "brushing up against" my body - I'll feel an ache on my calf, then it moves to my arm, then back to my hip, then across my jaw... does that make sense?

I get horrible sinus headaches and at times pretty bad pain in my gums, jaws and TMJ. Ice or heat often help. Lately, I have noticed I am making many, many mistakes as I type, and that I am stumbling every now and then because my feet don't seem to lift as high as they should when I walk sometimes.

There are probably more symptoms I have forgotten but my point - which I am finally reaching (thanks to all who have hung in there!) - is that even with all these symptoms, I seem to be the exception to the rule. Right now, I am functioning fairly well, and I don't understand the constant pain described by many here. I DO NOT QUESTION IT! Please don't misunderstand! I guess I just wonder if we have the same illness, or maybe even if I am just starting on this journey and am destined to have a future filled with unimaginable pain as is often described here.

I don't want to be a "poser". That sounds stupid but I can't think how else to say it. I want to find a community to which I belong and can relate. Could this be it or do I belong somewhere else?


HerRoyalHighness - August 2

Another thought... I have been being treated (with meds and psychotherapy) for depression, anxiety and sleep problems for the last 3 years. Could that be helping me to stave off worse pain and keeping me functioning a little easier?


Fantod - August 2

HRH - Welcome to the board. You do fit here and are certainly not a poser.

Fibromyalgia (FMS) affects all of us differently which is why it is so difficult to treat. If we were all gathered in a one room the array of symptoms would be staggering. It is no wonder some doctors still think we are all nutters.

You are welcome to participate, vent, ask questions anytime. Take care.


Stacey373 - August 2

Hi! Don't feel bad for writing so much, I tend to ramble on and on and every one seems to tolerate me (well at least I hope so! LOL)

I've been dealing with fibro for years, but was diagnosed about 1 1/2 years ago. I realized now, thinking back, that I didn't totally believe it. I basically did all the research myself, took it to my doctor and told her this is what I have, and she agreed with me. I was already taking all the "proper" meds for this, so basically life just kept going the way it had been...nothing new happened because of the diagnosis.

Even now I have days and weeks where I feel pretty good. (although I have to admit it's because of my pain meds I've been doing so well lately) The last couple of weeks I've felt great...been doing tons of stuff and haven't even gotten one of my horrible headaches!(knock on wood! LOL) yesterday I only took a couple pain pills and by last night I felt like I'd been hit by a truck! And this morning I feel even worse! It's days like today where I definitely DON'T question that I have Fibro...I can feel it through my whole body.

What I'm trying to say is that we do all have different symptoms and varying degrees of pain and problems. But just because you might feel better than another person TODAY doesn't mean you have this illness any less than everyone else.

I'm 37 years old and I do worry that this will progressively get worse as I get older. I honestly don't know if it will...I guess I don't really want to take the time to research that because I don't really want to KNOW! I do know that over the last 10 years I have gotten worse...don't know if that's because I wasn't treating this right because of not knowing what it was or if it really means that it will get worse as time goes on. My motto lately has been "Take it one day at a time" and I guess that's all we really can do.

Something I didn't realize until you said it...I have noticed I've been stumbling a lot because I'm not picking my feet up all the way and I also used to be an amazing typist and now I make a mistake every other key!

One of my biggest problems is stress! My doctor tells me all the time I need to find ways to relieve it, but that's "easier said than done!" I think lately I've really been trying not to stress over everything and basically just tell myself "it is what it is and I can't change it" I'm not a religious person but I do believe everything happens for a reason and also that it will all work out in the end. (does that make sense?!?) I know that stress is one of the worse things you can do to yourself with this illness, so trying to find ways to lessen it "in your mind" should be a top priority.

anyways...welcome to the group! Oh! and you asked about your meds maybe helping you function better? Probably! We are all on a bunch of different meds and I'm sure they help us all to a point. A lot of people have a hard time finding the right combination of medications, so you should feel pretty good knowing that yours are helping you so much. (and that's 1 less thing for you to worry about!)

Take Care and feel free to talk to me (and everyone else) any time, Stacey :o)


Katzra - August 4

Welcome HerRoyalHighness!

I think to some degree we all wonder if we fit in with others. Sometimes I feel very alone and unsure that anyone else knows what it is like to live with what I with. I know of many occasions I wonder if I should just isolate myself from everyone. I had a doctor tell me something once that I tend to think about at times I need strength to move past what others think of me, and that went something like "everyone feels pain differently, reacts to it differently, and is affected by it differently; so you can't compare what you're going through to what someone else is going through. You can't say something someone else is going through is easier or harder because it isn't the same for everyone." I hope that made sense, sometimes I have a hard time expressing things due to a TBI I haven't fully recovered from. Anyway, I just want to go back and say that in this board I have found others that are going through similar daily experiences and I don't feel as alone as I used to feel.


HerRoyalHighness - August 4

Thank you for the warm welcome! I'm still trying to wrap my head around this diagnosis and I have a lot to learn. It's nice to have a place to "check in" for advice, support and encouragement. I'm hopeful someday I'll know enough that I can be on the answering end of the questioned posted. :)


fibromite.u.k. - August 4

Hi to you and welcome HerRoyal Highness, you certainly seem to fit in here and have a lot of symptoms similar to me. I think that the medications that you are already taking may be taking away any pain you might have had. Just enjoy the fact that you are not in pain. The thing I found interesting is that you had sudden sensorineural hearing loss. That also happened to me a year ago and I have lost virtually all hearing in my right ear, which has been hard to adjust to, especially as I love music so much. I put up a thread about sudden deafness on this forum quite sometime ago, but not many people replied to it. There was just one other person who said she had it, but that it happened to her before she had firbromyalgia, so it doesn't seem to be a common symptom of fibro. I am also a middle-aged female by the way. I do think that fibromyalgia can be a lot worse when under stress.


HerRoyalHighness - August 5

fibromite.u.k. -
I'm sorry to hear about your hearing loss. I never would have believed how difficult it would be to hear and communicate with just one hearing ear. You'd think one good ear would be sufficient, but I've since come to realize it's like having one arm. That one arm may work perfectly, but if you only have one, it has a major impact on your life.

I wonder if there's not some auto-immune component to the hearing loss. Mine happened two weeks after a major upper respiratory infection resolved, so they think it may have been a viral cause, but no one knows for sure.

Today has been an achy day, a reminder that yes, I *do* have fibro. I just hope I can sleep tonight.


hollowsnothorcruxes - August 5

Per my rheumatologist, FMS goes away sometime between age 60-80. So it's not forever, just almost. I'm 25, I wish I'd gotten to have kids first. Don't know how I'm supposed to be off meds for a year.


fibromite.u.k. - August 5

Hi HRH to you again, It is wonderful to hear from someone who knows what it feels like to have only one hearing ear. As I said before, I love music and play several instruments, but I just don't feel like I want to bother that much with it anymore. All music sounds flat now, and as the ENT specialist said, I have lost my stereo effect. I do have a digital hearing aid now, but to be perfectly honest, it doesn't do a lot and sometimes seems to make things sound a bit distorted, however it is marginally better than not having one at all. They never really discovered what was the cause of it happening and said it was most likely a virus. At the time though I wasn't ill with anything viral-like. The strange thing though was that I was in church on the Sunday before and felt very strange, a feeling that I can't explain now, just very odd, and I also had even worse pain than I usually have for a couple of days. Then the day following that, my son was unwell with a high temp, shivery and aching, and what we assumed was flu but amazingly it only lasted for one day. Then three days later (on the Thursday) was went I lost my hearing in a matter of seconds. Then on the Sunday, my husband woke up with an extreamly swollen and painful eyelid. This led to him having eye drops that didn't help and eventually seeing an eye specialist who ran tests, but found no cause. The eye lid trouble went on for months. I am sorry to ramble here, but my point is, I wonder whether we all had some kind of a stange virus, which must have been pretty bad considering what it did to me and my husband, or whether it was all just coincidence that this all happened within the same week. I suppose I will never know. It's lovely to talk to you and I hope we do again. Sue x


amora - August 6

Welcome HRH. I just joined myself. I don't have a formal dx, but after reading your post and others, I think we both fit in. Don't worry about it.

Tell me more about your hands. That is what is plaguing me....for nearly two years now.



HerRoyalHighness - August 6

Hi Amora,

My hand symptoms come and go but I usually have some pain any time I make a tight fist. Other times I get a deep, sometimes throbbing ache in my hands, especially the heels and palms and into my wrist. I had surgery for CTS 7 years ago, so it shouldn't be carpal tunnel.

If I am having pain in my elbows or forearms I generally have pinpricks or tingling in my hands, along with pain. Strangely enough, sometimes it's only on the tops of my hands and sometimes only the palms. There are days when just holding a steering wheel to drive sets off the forearm pain and tingling.

I have noticed that I am making more mistakes lately when typing, even when I am not in a lot of pain, so I wonder if I am losing some dexterity. At times I have difficulty holding a full glass; it feels as if I will drop it, so I carry heavier things with one hand underneath them and the other hand holding the item.

Another hand problem is pain when pushing a thumb latch for a door or a similar action. Again, this is not all the time.

Things I have found to help are self-massage, heat or cold, and using one hand to press my fingers back to stretch the other palm (the opposite of making a fist). Sometimes nothing helps and I just have to wait it out.



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