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Posted 5/1/2006 6:05 PM (GMT 0)
I made it through my doctor's appointment and I must say I really like my doctor. He seems very knowledgable and concerned and asked all the general questions and what not. As of right now just from the exam today and from him speaking with me he is leaning towards fibromyalgia. We're not 100% sure yet. He did order some lab work to be done today to rule out arthritus and lupus and such. he also took XRay's of my hands to make sure we're not dealing with something else. He said he has several places that he checks for tenderness and soreness and I had tenderness and soreness in all the areas he checked. So it looks like Fibro. I'll keep you posted. Oh and not only is my doctor smart and seems to know his stuff he's cute too hehehehe. So is his male nurse. Don't tell hubby i said that hahaha. i don't ever get that lucky to have a cute doctor. anyway, i'll keep y'all posted. i just am so thankful that im not going nuts yea know that something is going on and the doctor is going to help us figure this out. He thinks i might also have Raynaud's Disease. My hands are forever changing color. They've done this as long as I can remember. In fact they were so pale in color at the doctor's office and now they are bright red. Its kind of funny to watch them. They change with mood, with weather, stress, anixety. Its strange really. I've heard of mood rings but hands. Anyway, i really feel like i did the right thing by going to the doctor. I'm glad i'm with someone who wants to help me feel better. I really like him and its true you can usually tell within 30 secs or less if you like someone or not and I liked him. anyway, i'll keep y'all posted.
Posted 5/1/2006 10:55 PM (GMT 0)
I know its not 100% diagnosed but it all makes perfect sense to me the fibro. God it will be such a reliefe to have some answers to know i'm not loosing my mind and to have a doctor that seems so knowledgable in this stuff. I've been to enough doctor's over the last five or six years to know a good one from a bad one. Plus if he treated my grandmother and she really likes him, then he must be good. I find that as I get older and the more my mother has to care for my grandmother she and i my grandmother and myself are a lot alike in many ways and in some ways i feel good about that. She's a sweet little old lady with a big heart and if we share a lot of the same health issues then i couldn't think of anyone i'd rather share them with.

anyway, now i'm just anxious to get the results back and get this ball rolling. i know i'll never be 100% but it sure would be nice to be 65 to 70% back to normal. I'd take that any time. I just knew their was something going on I knew it. Not that i'm wishing my self more health problems, only we know what's normal and what's not right. Before any of y'all see a doctor i highly recommend you ask around for references. Ask your friends, neighbors, family members, anybody. don't let your health insurance determine who you see a lot of times they'll just throw you to someone in the network and that's fine, but the doctor they give you might not be the right doctor for you. I mean its really bad when my rheumy doctor and my endoc doctor both have heard bad things about a particular doctor that i saw for a short time last year. so just take the time and ask around trust me its your health and would you want just any ol doctor treating it i don't think so. I mean you check around for good mechanics right? take the time to do the same to find a good doctor. that's my advice. i'll keep ya posted on this next journey. It seems like ever since i've been diagnosed with hashimoto's disease and being hypothroid all kinds of problems have come up but i'm tackling each one as its own. my next step is to see a dermatologist about my skin problems. Anyway, i can't type long my shoulder's are beginning to hurt again. one thing that concerned me was my blood pressure. it was pretty darn low even for me. It was 92/20 I think. I've never had it so low in my life. my heart beat was a little irregular which that's pretty normal. I'm hoping it was because i was a little anxious about the appointment. It might explain a little why i was feeling so poorly yesterday with a terrible headache and had a pretty bad dizzy spell yesterday afternoon. who knows. it'll just be something i'll have them keep a close eye on. I see the doctor again in two weeks maybe it'll be back up to normal by then. anyway rest well all, sleep good, and relax hard to do on a regular basis believe me I understand.
Posted 5/3/2006 10:53 PM (GMT 0)

hi taintedangel,

i'm writing because something you wrote caught my attention & concerns me SERIOUSLY! 92/20 for a blood pressure? 

what came of that?  what did the MD say about that?

i mean i get a 90/60 or even a 90/52 sometimes...but 90/20!!!  that 20 is seriously LOW!

do you have an @ home BP cuff?

please be careful

Posted 5/4/2006 11:52 AM (GMT 0)
They didn't seem to terribly concerned about the low blood pressure at the time. In fact I should've gone back to have them check it again before I left the office but didn't think about it after the blood work and xray's. I think the reason they weren't to concerned about it was because it was a first time deal. It really has never been that low before. They also said my heart beat was a little irregular. I go back on wednesday for the results of lab work and such and I'll have them check it again. It could've been I hadn't eatten anything that morning cause I had a feeling they would do lab work and the only thing I had to drink was a cup of coffee. Who knows. I'll keep you posted. It does have me a bit concerned myself I'm pretty right on with my blood pressure so for it to drop that much is kind of bothersome to me.
Posted 5/6/2006 12:21 AM (GMT 0)
something else that was kind of strange about my appointment; when i went to check out it was only $15 normally when you see a specialist of any kind you have to have a referral and it's $25 but the lady told me I didn't have to have a referral for this doctor. Why? You got me. Maybe it's because I had already seen a doctor at this particular office building. I told her I had one faxed over and she was like we got it, but you don't need a referral. I thought hmmm ok. I paid the $15 and we'll see what happens. She supposedly made note on my records. If my insurance sends me anything or they charge me extra next time I go in i'll say something about it. I should've got her name just for reference purposes. dang why didn't i think of that when i was there. Always get names. just found that a little strange. i didn't complain though. $15 is better than $25 that it usually is for a specialist.
Posted 5/9/2006 3:34 PM (GMT 0)
hey all just a quick hello. needed a break from work for a bit. Hope everyone is well. I'm hanging in there aches and pains and all. I've been noticing quite a bit more swelling espically in the hands the last few days. So I will definately bring that to my doctor's attention when I see him next wednesday. No major changes other the more swelling. I just feel over all achiness today everything seems to be hurting. I don't know if it has to do with the storms we're expected to have this afternoon or what but seem to be hurting all over down to my feet today. Its kind of strange do any of you find yourself becoming accustomed to the pain.
Posted 5/11/2006 11:48 AM (GMT 0)
hey all just checking in hope all is well. I've been feeling particularly miserable lately. a lot of it has to do with my monthly. I seem to feel worse a week or so before my cycle. I mean more than your standard pms its like extreme pms. I've been very dizzy and lightheaded the last couple of days and having what i call head swims every so often. I was feeling so weak last night on my way home from work I ate some crackers and that helped a little but just feel run down today and everything is just screaming out to me I hurt all over and i'm having one of those mentally not with it days and having to force one foot in front of the other. I really should've stayed home today but they've shut down our vacation calendar at work for the next two months so that's causing a bit of anxiety for me. I'm just constantly telling myself ok just take things slow today you know your not 100% with it no need to rush yourself and make things worse.

I'm wondering it was exactly a week ago when i was at the doctor and had my blood pressure checked and it was considerably low for me. I'm wondering if the onset of my cycle was any cause of that. I guess I'll find out when I go back on wednesday. I'll be at the end of my cycle so we'll see if my BP is back up to normal. I just haven't been feeling well. I felt so nausiated and lighted last night I didn't eat dinner. I just had a PB&J and went to bed, nothing sounded good or satisfying to me. I still don't feel like eatting much this morning but I will. Still kind of feel that way today. I'll eat but only because i have to.

Hope all is well
Posted 5/11/2006 12:17 PM (GMT 0)
Your aches and pains, fatigue, pops and snaps, the travelling symptoms, and/or "all over the place" describe what I go through a lot ... fibromyalgia! Rheumatoid arthritis and raynauds as well. I feel for ya, hang in there! I'm sure you'll get some treatment happening quickly now. Anti-inflammatories help me a lot (meloxicam) as do hot baths for the soft tissue and muscle hurts... the moist heat was amazing how it soothed me, but only for a while. Sometimes I would (and still do when bad) have 3 or 4 dips in a hot bath each day just for the relief.

Other things that help is I filled a sock with some uncooked rice, tie it off, and put it in the microwave for under a minute. I hold/mold the heated sock/rice to my joints/muscles and that also helps ease the pain and stiffness and I can move easier for a while again. The warmth also just gives me a soothed/comforted feeling. I can't handle extremes of temperature and "cool" is cold to me and I start to hurt and stiffen immediately I start to feel cold.

By the way ... my elbows are a real problem for me lately doing the same thing as yours. I can't straighten my arms completely anymore due to lotsa pain.

With fibro, the more tired I get, the more disturbed sleep I get, or not enough, the more and more I hurt all over. That's the fibro for me.

The "all over/all joinrts" problems with the fibro has only really been a big problem in the last year and I wasn't under any treatment or medical care (had none) so I'm glad you're seeing the doc now to get help with this stuff asap.

So ... you definately are not alone, and I hope that's some small comfort ;) Hang in there.

K.
Posted 5/11/2006 6:11 PM (GMT 0)
I appreciate that K. Its nice to know support is out there. Something else that's been eatting at me. Is it normal for family members not to take you seriously, not to believe you? My husband made a comment the other day that just irritates me. I was showing him my thumb on my right hand and how I thought it looked swolled and he looked and was like naww its not swollen he kind of chuckled and said my wife is turning into a hypocondriac(sp). I looked at him and was like i am not. Then he laughed a little and said he was just joking. My thought is he said right and if he said it he must believe it a little bit.

I mean my aches and pains are real and they hurt and he hurt my feelings when he said that. I guess just because I don't "look" sick he doesn't really see me as being sick. I mean ever since my autoimmune problems started with the hypothyroid and hashimoto's disease he's never really been involved in this you know. He doesn't ask about it shoot he doesn't even talk about it with me. I've gotten to the point that if I can't trust him to believe me when I say i'm not feeling good something isn't right then i'm just not going to tell him anything about my health for a while. I'm more than supportive with his health issues than he seems to be with mine. I would never say something like that to him even if I were joking. who knows maybe I read to much into that comment but its like dang it man if my husband doesn't believe me guess I'll be fighting this on my own. It looks that way as it is.
Posted 5/12/2006 6:01 AM (GMT 0)
I think sometimes those closest to us, even living with us, don't really understand how effected we are and it's a frustration and even a hurt when they don't take our words on faith and be at least sympathetic.

I also find that my health problems have been so chronic that people people get tired of hearing about all the aches and pains. But that's the problem when living with someone with chronic pain and health issues. They really do sort of take over a life and headspace. Most of the pain that's is "invisible" to others eyes except in our talking or complaining about them. I KNOW that even a tiny bit of swelling can cause me a lotta pain. The physical stuff dominates the attention ... and the life so often hey?

By the way, how do you feel after a hot bath and soak in it? Has it relieved some of the hurts and movements at least for a while?

I tried the hot pad (the rice sock) on my right elbow today and it hasn't helped that at all for me. Just waiting for some pills to kick in ;)

If you can't find the support at home, this forum and others like it are great for that. We can talk symptoms and all about what ails us and worries us in here in understanding territory. Nice to have it at home tooo but when its not there, or not enough because they live with us day in and out and may not be able to be very supportive all the time, we need to find that somewhere else ... like ehre, or whereever else we do.

I really do find it frustrating to have to deal with people who don't understand or know ... especially my loved ones, sometimes. I try not to talk much about my aches and pains to my daughter and try to focus talk on other things we're both comfy with. She's pretty cool (23) (oldest is 30) ...

I also think that with all this chronic stuff that fear causes a lot of anxiety towards symptoms, especially new ones and I know I talk (complain/whine) more about them then ... like fear of the future and what that might be like. In that case i try hard not to think about progression and try to live in the present as much as possible, but the fear fuels anxiety and bottom line its that anxiety that fuels the intensity of anxiety about my aches and pains. In my case, I just need to talk out loud to someone about some of these fears to try and come to terms with them, sometimes. Just to air the anxieties and decide how I can cope if and when.

Meanwhile ... some pain relief please! ;)

Post Edited (Kanadiana) : 5/12/2006 12:04:34 AM (GMT-6)

Posted 5/12/2006 3:32 PM (GMT 0)

i definitely agree with you both.  it takes a very emapthetic person to understand AI diseases.  a lot plays into it; being uneducated about it, not knowing how to handle illness, denial, not knowing what to say, sarcasm is easier, etc....

it's rough, especially if YOU are the one it's being handed to.

many times, the only people that truly understand are those who are themselves dealing with a chronic disease and people who work in the medical fields.

it is so vital that our partners are involved in helping us/ supprting us living with AI disease because everything that is psychological and mental is also physical as well.  it is sooooo critical to have strong support systems during this.  it makes a huge difference in how the body responds to treatment, stress, and wellness.

when a partner gets what is called "role strain" it is something that need to be addressed.  it's ineffective coping and support to the person living with disease.  you can always bring this up to your doctors for many of them can help counsil husbands & wives and family members about this. 

it's a very important issue. stuff like this can bring people closer or tear them apart.

i wish you well. take good care.

sincerely,

erin

Posted 5/12/2006 4:46 PM (GMT 0)
thanks erin I guess that's his way of handling this sarcassim. I know he cares and i know he cares about my health but when their's nothing he can really do to help I think it makes it difficult for him. Their really isn't and I try to tell him that this stuff does effect everything about my body and the way I feel like you said both physically and mentally. Its bizzar that an autoimmune disease such as hashimoto's and having hypothyroid can just completely throw your body out of control and i hate it because their's only so much we can do to make things better. Its not like I asked for this by any means just dare I say how god made me. Why he made me this way I have yet to figure out the answer and I'm not sure i ever will, but i keep going and i keep going to doctor's as needed and taking medicine's and dealing with all of it. I wish i didn't have to "deal with it" I wish I was normal and didn't have all these problems and I wouldn't say problems ok yes they are but they are annoying its like a piece of plastic or something that you can't shake off your hand you just can't get rid of it like you can a cold once you have an AI disease its with you and you grow with it and learn in the process hopefully along with others.
Posted 5/16/2006 11:51 AM (GMT 0)
good morning all hope all is well with everyone. I haven't been feeling to good these last couple of days. I just hurt all over any more. Yesterday afternoon my arms, wrist, hands, shoudlers were bothering me so bad. I couldn't wait to get home and rest some. I haven't been getting really good sleep lately. I go back to the doctor tomorrow for test results. In some ways I hope its fibro and in others i hope its RA cause at least with RA its somewhat treatable then again it could be a combination of both. I just don't want to go in and find out their's more going on than just aches and pains. That always seems to be the case when I go to a doctor any more something else creeps up.

Plus on top of that my hubby is going through a lot with his work and seems down lately. he has a big health test coming up for himself that he's concerned about. So not only do i have my health concerns to handle I'm worried about him and don't feel i can burden him with my worries at the moment. Then at my work they've closed down any vacation time for the next two months cause their's a lot going on right now and we're short staffed in our group so their's an overwhelming feeling there which doesn't help my situation at all. I just pray that I don't have any surprises in the next couple of months and can conserve my energy where I can. That's going to be the key there just slowing it down a notch and that's probably the hardest thing for me these days. I can't go and do as much as I am accustomed to doing and I hate that.

anyway just say some prayer's for myself and my husband as we get through the next couple of months and believe me when the calender is open again for time off I'll be taking myself a nice long weekend off. Then again if they allow that cause by the time the calendar is open we'll be in our new building and with the new company with other things going on, but I may just have to go to my boss and say look I need a break I'm worn out and crabby and I'm not going to do anybody any good if i keep going like this I need a break.

have a good one and i'll let y'all know what I find out tomorrow at the doctor's. I'm so anxious about it.
Posted 5/16/2006 2:24 PM (GMT 0)
hey all. man i'm having a rough day today. I just can't seem to get with the program. I'm still very sleepy. I feel like I could lay down for a nap at this moment. I already hurt and I feel sad today. No particular reason for being sad. I just feel sad/down. Even hubby picked up on it this morning. He asked if everything was ok and I told him that aside from aches and pains that don't seem to go away no matter what I do I'm fine. Oh well, I guess all i can do right now is take one day at a time right. I know as the day goes on i'll perk up. I sure hope so. I hate feeling like this.
Posted 5/16/2006 10:16 PM (GMT 0)
sad  hey there,

awe, you really sound like you've hit a rough patch here.  like you said yourself, and what i live by myslef as well...."take it hour by hour if need be".  this too shall pass.

 

geesh i hope it is not RA.  believe me, it's not easily treatable!  i would gladly give a trade in for anything else.

fibro can and does get REALLY bad and it is possible for you to be in an acute flare right now.

 

ah i know how that feels, no vacation time...kinda makes ya feel like you're "held prisoner" or kinda NO ESCAPE or claustraphobic.  it does add to stress because then we think, confused "Oh God what if i need time off or a sick day!?!" confused  But the smart thing to do for the time being is to eliminate ALL absolutely unnessasary things. trying to conserve energy and all precious rest time is critical.  it's a proirity though.

i'm in the boat too.  very bad joint pain since saturday nite, enough to cause tears! and strangely in my spine too...which touch wood, my spine was like the first thing to start to get a little better after starting treatment.  but yeah, very painful.

the storm systems do not help!

hang in there!

erin 

Posted 5/18/2006 11:45 AM (GMT 0)
Thanks for the support erin. i had a productive day yesterday. It does appear to be fibromyalgia(sp) all test results came back within the normal range so that's good. The RA doctor wants me to try Ambien for working on a better nights sleep. He also wants me to try and excercise more. Which I'm going to start tonight. I'm going to go home and try and walk for about 5 minutes or so this evening. Well maybe 3 minutes we'll see how I feel. My thyroid doctor felt pretty positive about the diagnois. We talked quite a bit about it. He wants me to try Lexapro for anxiety. He said a lot of times that kind be an underlying problem with fibro. I told him I do have a history of anxiety problems. Shoot just getting ready and out the door for work can cause anxiety for me some days. I'm going to start that this weekend. He said I would feel pretty rough for a week but within two or three weeks I should start seeing some results from it. He also said that if I ever feel like its not working for me its not one that I have have to slowly work off of so that's good. He also raised my synthroid a bit. He said as time goes on we'll continuely have to raise my synthroid.

It was a lot to take in yesterday. I guess I'm just going to read up on fibromyalgia and I'll probably have more questions when i go back in a couple of months for follow up with the doctor. I just hate having these AI diseases that have no cure. I kind of left feeling like the doctor basically said get more rest, more excercise, and your basically on your own with this one. you know, I guess i'm really going to have to take this fibro thing into my own hands and figure out the things that do and don't make me feel better. I'm going to look for a couple of books this weekend cause not only do I need to read on it and understand it but I'd like for my husband to as well. I better go lots of work ahead of me today since I was gone yesterday.
Posted 5/18/2006 2:40 PM (GMT 0)
dear taintedangel,

hat's off to ya for taking things into your own hands!  :-) also i have to say that you are very articulate with expressing how you feel & what is going on with your body & the actions you want to take.  that WILL be key in dealing with FMS.

although rheumatologists treat FMS, theoretically it falls into the musculoskeletal area of medicine. it also isn't classified as an autoimmune disease neither.

 

  confused   where the heck does it come from?  confused the etiology is unclear to date. but like you said, neurotransmitters seem to be involved.  right now researchers are looking into endocrine involvement!  (uh huh...thyroid????)

 *FMS will be aggravated by stress & exertion, so do be careful with exercise.

sleep is vital with FMS.  redface patients w/ FMS lack mostly stage 4 REM sleep which is most pertinent.  so i would definitely take the doc up on the sleep aid help.

management for FMS: nsaids; tricyclic antidepressants for sleep & pain such as Elavil and also what your doc was RXing.

it all breaks down to: painful muscle fibers.  in itself it is not a disease, but a condition rather.  i think it stems from something say an infection or virus in a persons past or an underlying endocrine disorder (my theory  :-) ).

 

with FMS do not be surprised if you come across muscle spasms and irritable bowel syndrome as well (kinda goes along with the fun...  mad yeah right).

 

any good readings you find or any guidance & help ya pick up from the resources you get please let us know...it will be very valuable to all who suffer from FMS.

best wishes to you & do keep that great spirit!

:-)

 

Posted 6/3/2006 9:06 AM (GMT 0)
I've read in a number of places that fibromyalgia is just a new name for an old game ... rheumatism! I'll never laugh at people who use that old expression again "My rheumatiz is actin' up on me" .... because now I know exactly what that feels like. No matter what you call it it hurts like heck sometimes and can be extremely disabling when very flared.

I do know that lack of enough deep sleep will cause major muscles and joints, connective tissues, flares of all sorts of problems, very disabling, for me. I figure anything that can help me to sleep a long deep one goes a very long way to keeping symptoms more managable/tolerable.

I should browse and learn more about sleep disorders and research about it these days because it sure appears to me like if a cure for sleep disorders could be found, then a lot of other "physical and psychological disorders and diseases" might just be cured immediately because its the sleep disorder that caused the other stuff to happen in the first place. Its something for me to think about anyways and see what info I can find that agrees with or denies that idea :D
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