Fibromyalgia Thread

[tiggspring]

Does anyone have a good recommendation for a good pair of shoes for WDW?

If you don't mind sneakers, I found that new balance walking shoes were great. Fit right away and still feel good 6months later. I'm a wide and they makes them in wide sizes too.

 

[mommy2allgirls]

If you don't mind sneakers, I found that new balance walking shoes were great. Fit right away and still feel good 6months later. I'm a wide and they makes them in wide sizes too.

Thanks! There is a new balance store not far from us I think I will go and check them out!

 

[toocherie]

Hi everyone--sorry I've been gone so long.

First, I was really busy at work--second I was at WDW! Where I got the swine flu! Needless to say, this was not the best of trips and I am still recovering--we still managed to have "some" fun but we seemed to have a disaster a day--including Mom thinking she had lost her purse and me actually losing my room key and someone charging $575 in merchandise to it AFTER I had cancelled/voided it with the front desk. Needless to say, I was not responsible for the charges . . . . .

I'm sure it was because I was on vacation, but other than the body aches from the flu I didn't seem to have as many aches and pains in Florida. Now I'm back and all the usual stuff is back too. My right foot is killing me along with the right hip. Does anyone else seem to have more issues on one side than the other? Mine always seem to be on the right side.

So, tomorrow night I am getting a massage and I'm hoping that will help. I can't wait!

Hope everyone is doing well and I'll be back soon!

Cheryl

 

[stampin_fool]

I am so sorry that you didn't have a magical vacation.

I always hurt much more on my right side as well. Very strange isn't it. I wonder why this happens. Not that I am complaining because I am grateful that my left side doesn't hurt as bad as the right side, just think it is weird. This is one of the reasons I wasn't sure that the fibro diagnosis was incorrect. If it is happening to others tho I guess it can happen. I thought it was just me, LOL.

Hope you are feeling better soon.

Ronda

Hi everyone--sorry I've been gone so long.

First, I was really busy at work--second I was at WDW! Where I got the swine flu! Needless to say, this was not the best of trips and I am still recovering--we still managed to have "some" fun but we seemed to have a disaster a day--including Mom thinking she had lost her purse and me actually losing my room key and someone charging $575 in merchandise to it AFTER I had cancelled/voided it with the front desk. Needless to say, I was not responsible for the charges . . . . .

I'm sure it was because I was on vacation, but other than the body aches from the flu I didn't seem to have as many aches and pains in Florida. Now I'm back and all the usual stuff is back too. My right foot is killing me along with the right hip. Does anyone else seem to have more issues on one side than the other? Mine always seem to be on the right side.

So, tomorrow night I am getting a massage and I'm hoping that will help. I can't wait!

Hope everyone is doing well and I'll be back soon!

Cheryl

 

[brighteyes]

I am so sorry that you didn't have a magical vacation.

I always hurt much more on my right side as well. Very strange isn't it. I wonder why this happens. Not that I am complaining because I am grateful that my left side doesn't hurt as bad as the right side, just think it is weird. This is one of the reasons I wasn't sure that the fibro diagnosis was incorrect. If it is happening to others tho I guess it can happen. I thought it was just me, LOL.

Hope you are feeling better soon.

Ronda

just a quick note i should be studying. i dont notice fibro pain worse on any side unless I have been lifting something with that arm or writing alot for school.

However, i do have issues with my right leg/foot swelling. both swell but the left is really bad.

and my eyes run soooo much always look like im crying. but my left one is the worst.

ttyl feel better everyone.

disney - im soooo jealous.

stephanie

 

[mama4]

Hi. I'm Kristi and I'm happy to have found this thread! I'm 37 and a SAHM of 4 kids ( only one not in school) and I've been trying to find out what's wrong with me for years. My family practice Dr just put me on a 2 week titration pk of Savella after I gave her a quick rundown of my symptoms. She said if it works then I have Fibromyalgia. I'm on day 6 and I noticed on day 4, I had less pain but today I have a lot of pain in my neck and shoulders. My symptoms aren't nearly as bad as some of the stories I've read on the internet but some of my symptoms do add up. I just wanna make sure my Dr is heading in the right direction with this...she seemed so quick to come to this conclusion. I've been to a few different drs many times over the years for many different symptoms and only recently started thinking some of the symptoms may be related. My symptoms are:

mostly pain in neck, shoulders, arms & occasional pain in wrists, jaw, hands, legs, ankles, lower back

headaches (migraines for past 20+ years)

fatigue

stiffness in shoulders

occasional anxiety

memory and concentration problems (Fibro fog?)

EXTREME pain and elevated symptoms during menstruation


My question is has anyone else noticed a link between fibro and severe period symptoms?

I don't know if I should suggest that to my Dr or not...she seems to just want to give me meds for any suggestion I have ..I'm trying to find a cause but she basically seems to be asking "What do you think you have..fibromyalgia or depression/anxiety disorder?" and then prescribe a med for it. I felt like she thought I was a hypochondriac when I read my list of symptoms..and in reality, I don't go to the Dr that often. She's only ever treated me for migraines (prescribed Maxalt). Anyway, sorry this is so long and confusing. I'm just hoping to get some ideas before I go see her again next week. Oh, also I should mention.... I started my period on Tues and woke in the night curled up in the fetal position with cramps- I've had natural childbirth twice and my cramps were that bad and worse because they didn't come & go- basically like one 4 hour long continuous labor pain. Dh stayed beside me for the 4 hrs until 2 doses of Pamprin and heating pad finally allowed me to fall asleep. He said he almost took me to ER at one point. Then I was in bed all day Wednesday and most of this AM. Finally was able to shower and get up this afternoon. I am usually bedridden for at least a day every month due to this kind of pain. Anybody else going through this?
TIA

 

[stampin_fool]

I do notice more pain during that time but it is usually in my right leg/hip area not my stomach. My doctor said that she had heard of that before (people of mentioned this to her) but didn't have any explanation of why this occurs. Your symptoms sound a lot like mine. I was finally diagnosed with fibro about a year ago. This is after going to many docs, neuros, having tests over and over, etc. At one point I was told they thought I had MS but the MRI was clean. Another doc told me that if I wasn't have a flair up at the time of the MRI the lesions wouldn't show up so I could still have MS. I sometimes wonder if doctors really know what they are doing, LOL. My husband has been on the verge of taking me to the ER on several occasions due to seeing me in so much pain.

If you don't feel comfortable with the doctor that you are seeing, try someone else. I see a nurse practitioner now and she seems to take more time with me and really listen to what I am saying but there are times when she is unsure. She has told me that there are so many new things out there that haven't been figured out yet it may take a while but she is willing to try, which is great. Other docs I have been to in the past have brushed off the symptoms and told me it all has to do with stress.

Sorry I am rambling and probably not much help. Can't stay focused today.

Welcome to our group, glad you found this thread!

Ronda

Hi. I'm Kristi and I'm happy to have found this thread! I'm 37 and a SAHM of 4 kids ( only one not in school) and I've been trying to find out what's wrong with me for years. My family practice Dr just put me on a 2 week titration pk of Savella after I gave her a quick rundown of my symptoms. She said if it works then I have Fibromyalgia. I'm on day 6 and I noticed on day 4, I had less pain but today I have a lot of pain in my neck and shoulders. My symptoms aren't nearly as bad as some of the stories I've read on the internet but some of my symptoms do add up. I just wanna make sure my Dr is heading in the right direction with this...she seemed so quick to come to this conclusion. I've been to a few different drs many times over the years for many different symptoms and only recently started thinking some of the symptoms may be related. My symptoms are:

mostly pain in neck, shoulders, arms & occasional pain in wrists, jaw, hands, legs, ankles, lower back

headaches (migraines for past 20+ years)

fatigue

stiffness in shoulders

occasional anxiety

memory and concentration problems (Fibro fog?)

EXTREME pain and elevated symptoms during menstruation


My question is has anyone else noticed a link between fibro and severe period symptoms?

I don't know if I should suggest that to my Dr or not...she seems to just want to give me meds for any suggestion I have ..I'm trying to find a cause but she basically seems to be asking "What do you think you have..fibromyalgia or depression/anxiety disorder?" and then prescribe a med for it. I felt like she thought I was a hypochondriac when I read my list of symptoms..and in reality, I don't go to the Dr that often. She's only ever treated me for migraines (prescribed Maxalt). Anyway, sorry this is so long and confusing. I'm just hoping to get some ideas before I go see her again next week. Oh, also I should mention.... I started my period on Tues and woke in the night curled up in the fetal position with cramps- I've had natural childbirth twice and my cramps were that bad and worse because they didn't come & go- basically like one 4 hour long continuous labor pain. Dh stayed beside me for the 4 hrs until 2 doses of Pamprin and heating pad finally allowed me to fall asleep. He said he almost took me to ER at one point. Then I was in bed all day Wednesday and most of this AM. Finally was able to shower and get up this afternoon. I am usually bedridden for at least a day every month due to this kind of pain. Anybody else going through this?
TIA

 

[stampin_fool]

I got a reply on the study. They are just starting up. No subjects yet. Too much to put here. If you are interseted in what they said I'll Pm the entire email. Just let me know.

I am interested in this could you fill me in? Thanks.

Ronda

 

[mama4]

I do notice more pain during that time but it is usually in my right leg/hip area not my stomach. My doctor said that she had heard of that before (people of mentioned this to her) but didn't have any explanation of why this occurs. Your symptoms sound a lot like mine. I was finally diagnosed with fibro about a year ago. This is after going to many docs, neuros, having tests over and over, etc. At one point I was told they thought I had MS but the MRI was clean. Another doc told me that if I wasn't have a flair up at the time of the MRI the lesions wouldn't show up so I could still have MS. I sometimes wonder if doctors really know what they are doing, LOL. My husband has been on the verge of taking me to the ER on several occasions due to seeing me in so much pain.

If you don't feel comfortable with the doctor that you are seeing, try someone else. I see a nurse practitioner now and she seems to take more time with me and really listen to what I am saying but there are times when she is unsure. She has told me that there are so many new things out there that haven't been figured out yet it may take a while but she is willing to try, which is great. Other docs I have been to in the past have brushed off the symptoms and told me it all has to do with stress.

Sorry I am rambling and probably not much help. Can't stay focused today.

Welcome to our group, glad you found this thread!

Ronda

Thank you Ronda. What you said about your nurse practitioner taking more time with you is so true for me too. I want to find a larger practice with nurse practitioners and maybe even midwives. This was also a suggestion from my sister who is a midwive's assistant and she is also in nursing school. My current Dr is the only one in her practice and I've only ever seen two other girls there- the one who takes my blood pressure and sends me to the back and the check out girl. I think my Dr is probably to busy for her patients ???
I too have leg pain around my time of month. It is actually one of my worst symptoms. I've been complaining about it for about 3 years now. One Dr did an ultrasound and found nothing so the subject was dropped. I plan to bring it up again at my next Dr visit (to discuss the Savella I'm taking) because I have to have something done about these cramps and I think it is all tied in together. If she doesn't take me seriously I guess I'll start looking for an OBGYN with a large practice??? Maybe they'll have some ideas about my "Fibro-like pain" too.
That is scary about being told it still could be MS. I hope that is not the case for you but I know Drs can jump to conclusions about things too. Thanks for your reply and good luck in being pain free!

 

[tiggspring]

Hi everyone--sorry I've been gone so long.

First, I was really busy at work--second I was at WDW! Where I got the swine flu! Needless to say, this was not the best of trips and I am still recovering--we still managed to have "some" fun but we seemed to have a disaster a day--including Mom thinking she had lost her purse and me actually losing my room key and someone charging $575 in merchandise to it AFTER I had cancelled/voided it with the front desk. Needless to say, I was not responsible for the charges . . . . .

I'm sure it was because I was on vacation, but other than the body aches from the flu I didn't seem to have as many aches and pains in Florida. Now I'm back and all the usual stuff is back too. My right foot is killing me along with the right hip. Does anyone else seem to have more issues on one side than the other? Mine always seem to be on the right side.

So, tomorrow night I am getting a massage and I'm hoping that will help. I can't wait!

Hope everyone is doing well and I'll be back soon!

Cheryl

So sorry that your vactaion was lacking pixie dust!!

I too have much more trouble with the right side than the left. I thought it was becasue my shoulder injury is on the right side. Intresting that congintive functioning is on the left side of the brain just as right side muscle funtioning. Most of my migraines are focused on the right side. I now have to sleep on the left side (used to sleep on right) because I cannot stand putting pressure on the right for very long at all. Also when I limp from fatigue it is my right leg that drags behind.

 

[tiggspring]

Hi. I'm Kristi and I'm happy to have found this thread! I'm 37 and a SAHM of 4 kids ( only one not in school) and I've been trying to find out what's wrong with me for years. My family practice Dr just put me on a 2 week titration pk of Savella after I gave her a quick rundown of my symptoms. She said if it works then I have Fibromyalgia. I'm on day 6 and I noticed on day 4, I had less pain but today I have a lot of pain in my neck and shoulders. My symptoms aren't nearly as bad as some of the stories I've read on the internet but some of my symptoms do add up. I just wanna make sure my Dr is heading in the right direction with this...she seemed so quick to come to this conclusion. I've been to a few different drs many times over the years for many different symptoms and only recently started thinking some of the symptoms may be related. My symptoms are:

mostly pain in neck, shoulders, arms & occasional pain in wrists, jaw, hands, legs, ankles, lower back

headaches (migraines for past 20+ years)

fatigue

stiffness in shoulders

occasional anxiety

memory and concentration problems (Fibro fog?)

EXTREME pain and elevated symptoms during menstruation


My question is has anyone else noticed a link between fibro and severe period symptoms?

I don't know if I should suggest that to my Dr or not...she seems to just want to give me meds for any suggestion I have ..I'm trying to find a cause but she basically seems to be asking "What do you think you have..fibromyalgia or depression/anxiety disorder?" and then prescribe a med for it. I felt like she thought I was a hypochondriac when I read my list of symptoms..and in reality, I don't go to the Dr that often. She's only ever treated me for migraines (prescribed Maxalt). Anyway, sorry this is so long and confusing. I'm just hoping to get some ideas before I go see her again next week. Oh, also I should mention.... I started my period on Tues and woke in the night curled up in the fetal position with cramps- I've had natural childbirth twice and my cramps were that bad and worse because they didn't come & go- basically like one 4 hour long continuous labor pain. Dh stayed beside me for the 4 hrs until 2 doses of Pamprin and heating pad finally allowed me to fall asleep. He said he almost took me to ER at one point. Then I was in bed all day Wednesday and most of this AM. Finally was able to shower and get up this afternoon. I am usually bedridden for at least a day every month due to this kind of pain. Anybody else going through this?
TIA

Welcome Kristi!! As far as the Diagnosis of Fibromyalgia or Chronic fatigue symdrome goes you cannot diagnose them by what meds you repond to. I have both and I do not respond to any meds as a matter of fact I am very sensitive to meds and this is not uncommon. The only way to diagnose is by symptoms, pain trigger points for Fibro and ruling out multiple infectious diseases as well as allergies, MS, Lupus and other nuralogical problems. From my experience it is best to go slow with med changes (adding/stopping and increases/decreases) because this can cause flares.

The biggest thing with Dr's is to find one that 1. believes you 2. has at least some knowledge and is willing to learn 3. isnt med crazy ( some like to throw meds around like candy) 4. will be a partner in you care. You will be the only "expert" on your disease. As you will see by looking at our previous posts each one of us has our own unique brand of FMS, CFIDS. Some like me have both

On the period frount I too am worse at certain times. After 15 years this just started 18months 2years ago. I have some MAJOR fatigue crashes that put me in bed for 5-7 days around day 14 of my cycle. I recently went to the endocrenologist and I am not peirimenapausal so who knows whats going on there.

 

[tiggspring]

I am interested in this could you fill me in? Thanks.

Ronda

Sent you a copy of my email by PM

 

[tiggspring]

just a quick note i should be studying. i dont notice fibro pain worse on any side unless I have been lifting something with that arm or writing alot for school.

However, i do have issues with my right leg/foot swelling. both swell but the left is really bad.

and my eyes run soooo much always look like im crying. but my left one is the worst.

ttyl feel better everyone.

disney - im soooo jealous.

stephanie

Hey Stephanie how did your DR appointment go? You ticker running ok?


Well did enough posts for one night.

Sending pain free vibes and Pixie dust to all

 

[toocherie]

Sent you a copy of my email by PM

hey there--could you PM me too? thanks!

 

[tiggspring]

hey there--could you PM me too? thanks!

Should be in you box now

BTW my Dr was able to look at the websites and his assistant encouraged me to contact the Cleveland clinic's infectious disease department. The researcher that found XMRV is located there and Cleveland is closer than NV for me. My DH is going to school at Case Western which is affiliated with CC so He will start working his contacts. It may take a few weeks with his schedule but I'll let you know when I learn something new.

 

[brighteyes]

Hey Stephanie how did your DR appointment go? You ticker running ok?


Well did enough posts for one night.

Sending pain free vibes and Pixie dust to all

Hi Tigg.

I had to cancel my dr app because i had a school meeting to prep for a presentation i know I probably shouldn't have done that but I am going this week so I will let u know.

I made it through my week of hell and i am paying for it now. Since fri of last week I have had anywhere from 5 to 1 1/2 hours sleep each night because of h omework. 2 thirty page papers, presentation and an exam and classes. My Word Program kept freezing and had to start most of it ALL over again. Microsoft finally came to the rescue I really don't know WHY I am doing this to myself.

I feel like crap and slept for 2 hours when i came home yesterday adn slept all night and most of today until 2 30 and am going back to bed now.

I felt the pain starting and had fibro fog today and woke up all swollen -- but its gone now. The swelling seems to be due to crappy sleep or lack of it. (I think)

Anyways I missed you all. I have some housecleaning to do tomorrow then will sit down for a good read and catch up with u all.

Steph

 

[EDuke98080]

Hi all! Hope you all had a good week. I am on the totally messed up sleeping schedule again. I slept until noon almost every day this week and am so behind on everything. Had a major cleaning frenzy tonight, not sure why and my back is bothering me, not sure what I did to aggravate it. On top of fibro I have 2 herniated disks that flare up and make it so I can't move, drive, sleep or anything . Since last year it has been ok but for the last few days my right leg has been hurting the "your disks are flaring up" kind of hurt. I probably should get back to my exercises for it but I have been so draggy and tired I stopped doing them.

Steph - hope your work load lightens soon. Hope everyone has a pain free restful weekend.

 

[brighteyes]

Hi all! Hope you all had a good week. I am on the totally messed up sleeping schedule again. I slept until noon almost every day this week and am so behind on everything. Had a major cleaning frenzy tonight, not sure why and my back is bothering me, not sure what I did to aggravate it. On top of fibro I have 2 herniated disks that flare up and make it so I can't move, drive, sleep or anything . Since last year it has been ok but for the last few days my right leg has been hurting the "your disks are flaring up" kind of hurt. I probably should get back to my exercises for it but I have been so draggy and tired I stopped doing them.

Steph - hope your work load lightens soon. Hope everyone has a pain free restful weekend.

Eduke,

Your back probably hurts due to your crazy cleaning frenzy. My cleaning frenzies usually result in that and I DON'T have a herniated disk!! Now that you are in pain, will your excercises help or hinder? Should you wait until you are better to do them?

My sleep is really messed up too now. I have pretty much slept since coming home from school on Thursday. Even slept through most of my son's bd today But I did make it through a movie and had cake with him.

Sending you all pixie dust.

Stephanie

 

[tiggspring]

Stephanie,

DH flat on his back too from flu and exhastion last week. Balancing school and home is so tough. Can you pull back some next semester? Do they have CLEP (college level examination program) tests in Canada?

I was so depserate my last year of school I droped down to 20hrs told my DH1 he was going to have to take over since he was "better" and I clep'ed out of 30 credits of classes while taking 16cr at school and graduated a year early. Couldnt imaginie going one more year full time plus taking care of DH1. If you can take the exams you avoid all the papers and because they are ment to be taken at many schools you only need to score a 50pecent or so to pass. They figure that is the overlap of information between classes from school to school. THey dont hurt you gpa because they are scored nutral Pass/fail. You can also retake them.

I pulled out 30 credits on things I already knew. 8credits history which replaced 2 hx classes that would have had at least 3 papers each. 8 credits biology which I had taken AP in High School but was afraid of the test. Went in cold becuase I was too tired to study and got an 80 School psychology because it counted as an education class and if I could pass that based on wha I knew from 3 year of Psych well....6 in general social sciences and I forget what else. Its easier than you would think.

Just a thought.

 

[brighteyes]

Stephanie,

DH flat on his back too from flu and exhastion last week. Balancing school and home is so tough. Can you pull back some next semester? Do they have CLEP (college level examination program) tests in Canada?

I was so depserate my last year of school I droped down to 20hrs told my DH1 he was going to have to take over since he was "better" and I clep'ed out of 30 credits of classes while taking 16cr at school and graduated a year early. Couldnt imaginie going one more year full time plus taking care of DH1. If you can take the exams you avoid all the papers and because they are ment to be taken at many schools you only need to score a 50pecent or so to pass. They figure that is the overlap of information between classes from school to school. THey dont hurt you gpa because they are scored nutral Pass/fail. You can also retake them.

I pulled out 30 credits on things I already knew. 8credits history which replaced 2 hx classes that would have had at least 3 papers each. 8 credits biology which I had taken AP in High School but was afraid of the test. Went in cold becuase I was too tired to study and got an 80 School psychology because it counted as an education class and if I could pass that based on wha I knew from 3 year of Psych well....6 in general social sciences and I forget what else. Its easier than you would think.

Just a thought.

Well we have something like that here from what I understand. Here it is called prior learning. I did that my first year (of my second program). I did one full year of college as a voluntary prep course to better my chances of getting into social services program. It is a very hard program to get into and I fell just short the first time cause I didn't havwe any volunteer hours.

So from that 1st year is like a foundation course. It was still 14 credits, so I gained 3 or 4 credits that I did not have to do in my first year social services cause they were the same or close enough. I guess that's why I am finding it harder. Last year at this time I had two less courses. and second semester I had 1 less course.

So this is my third semester out of 4 for social services. It is a very hard program to get into. Usual number of pple applying is 800 - 1000 per year and they accept 40, except when I came in they let 90 in cause it was so big, but we lost 40 anyway by first semester cause its so hard. I think even now we have shrunk to about 35 or so of us left. This semester is really kicking my butt. Up until now I had maintained a 3.75 grade average.

The thought of part time would be soo welcome right now, but I only have three more weeks and I am free. Then three weeks off, then Jan - April 15 and I am done for good. If I am able to work by then, he he :headache

Just wish me pixie dust that I did not fail my papers or my exam due to my lack of sleep. Oh in my wisdom of reading my own written notes wrong, I studies the wrong Chapters for my exam!!! That is a Stephanie move. Or can I blame that one on the fibro?

Pixie dust to you all.