Fibromyalgia Thread

[niftywench]

hello fibro friends!

first time to this part of the Dis! i am a 43 year old diagnosed with Fibro 18 months ago. i have not met many others living with it except my own mom. It seemed to be set off after I had a spinal fusion surgery in 2011. due to these things as well as diabetic neuropathy i had to leave my beloved job as well as stop playing the drums after 12 years and filed for disability which i was recently approved for. Now I can spend more time taking care of me and my health. i recently began a program at Spaulding Rehab in Boston for people who live with chronic pain and also started chiropractic care. i am happy to find this group and look forward to 'meeting' you all.


Jenne

 

[rosanab1031]

Hi all.

For a quick update, the biopsy results didn't come back, because they didn't get a big enough sample for the biopsy. So I get to do it again. Next time they are going to knock me out, do a d & c and get the sample that way. I'm being knocked out because I'm having another surgical procedure done the same day, by a different doctor. They coordinated it so I'd only be under anesthesia once. The other one is the plastic surgeon, who is going to clean up my non-healing mess and stitch it closed. It's an area that never healed properly after my surgery in March due to infection and other issues.

They are going to do all of it on 7/22. 28 or so days before my trip ::sigh::

I should be going home the same day, barring any complications. I should also have all my results back in a week or so following the surgery. I can't stand this anymore.

I hope your are all doing well. I haven't really been keeping up here, this is the first time I've been on the computer in days!

So sorry for what you're going through. But hopefully some good news will come out of all of this. Much love and gentle hugs!

 

[rosanab1031]

Hi everyone. I'm 36 and was diagnosed in Feb after months of unexplained pain in my joints, nerves and muscles. I didn't even want to move because i hurt so bad. I tracked my symptoms for 6 months and noticed they would start a few days before my cycle, last for about 2 1/2 weeks and slowly fade allowing relief for about a week or so only to start all over. All blood tests and X-rays came back ok but my rheumatologist's touch test confirmed the diagnosis. I'm not the norm but my obgyn said most cases are chronic but some are also hormonal. He advised me to eliminate gluten from my diet. I did extensive research and found it helped a lot of people. Pain meds were my last resort so I went gf march 1st which has helped tremendously. I still have flare ups, sometimes deep tissue pain, sometimes joint pain, sometimes my whole body hurts. But I can honestly say eliminating gluten has helped me personally. Good to know I'm not alone on this wild ride.

Welcome to the club! Glad the gluten free diet is working for you. I have been thinking about trying it. Just seems hard and expensive. Any tips?

 

[rosanab1031]

hello fibro friends!

first time to this part of the Dis! i am a 43 year old diagnosed with Fibro 18 months ago. i have not met many others living with it except my own mom. It seemed to be set off after I had a spinal fusion surgery in 2011. due to these things as well as diabetic neuropathy i had to leave my beloved job as well as stop playing the drums after 12 years and filed for disability which i was recently approved for. Now I can spend more time taking care of me and my health. i recently began a program at Spaulding Rehab in Boston for people who live with chronic pain and also started chiropractic care. i am happy to find this group and look forward to 'meeting' you all.


Jenne

Welcome! I feel you on the music thing. I can only play the piano now for minutes at a time I have found chiropractic very beneficial as well as acupuncture and muscle injections.

 

[mommasita]

Hi everyone..

Welcome to everyone new!

Seems like so many headaches and other pains.. I think around here the heat is getting to everyone.. We had no summer, and then BAM we got it...

Heading in for a 3 hour appt for a bone scan tomorrow/today.. I will be glad when it is over.

We had a nice vacation, despite the tropical storm drowning us for one day, we made the best of it.. HOme to laundry and just reality sucks...

 

[rosanab1031]

So I have actually been feeling pretty good for the last couple of weeks. Low energy but not hurting so bad. That all changed yesterday of course! Horrible pain in my lower body and hands and wrists. Today I am in San Diego for the start of Comic Con. Thought I'd be able to go without the cane this year but it hasn't even been a full day and I am in so much pain already Great time for the fibro to flare up! Very sorry for what everyone else had been going through. Much love and many pain free hugs for all of you!

 

[SeaSpray]

hello fibro friends!

first time to this part of the Dis! i am a 43 year old diagnosed with Fibro 18 months ago. i have not met many others living with it except my own mom. It seemed to be set off after I had a spinal fusion surgery in 2011. due to these things as well as diabetic neuropathy i had to leave my beloved job as well as stop playing the drums after 12 years and filed for disability which i was recently approved for. Now I can spend more time taking care of me and my health. i recently began a program at Spaulding Rehab in Boston for people who live with chronic pain and also started chiropractic care. i am happy to find this group and look forward to 'meeting' you all.


Jenne

Welcome Jenne How is the chronic pain program working for you? My DH has diabetic neuropathy. He sees a diabetes specialist at the Joslin Center in Boston. Do you live in MA? We're south of Boston.

Hi everyone..

Welcome to everyone new!

Seems like so many headaches and other pains.. I think around here the heat is getting to everyone.. We had no summer, and then BAM we got it...

Heading in for a 3 hour appt for a bone scan tomorrow/today.. I will be glad when it is over.

We had a nice vacation, despite the tropical storm drowning us for one day, we made the best of it.. HOme to laundry and just reality sucks...

How was the bone scan? I hope it went as well as possible. This heat is crazy... I'm glad that you had a nice vacation. Weather is always the one thing that we can never plan for or have control over.

So I have actually been feeling pretty good for the last couple of weeks. Low energy but not hurting so bad. That all changed yesterday of course! Horrible pain in my lower body and hands and wrists. Today I am in San Diego for the start of Comic Con. Thought I'd be able to go without the cane this year but it hasn't even been a full day and I am in so much pain already Great time for the fibro to flare up! Very sorry for what everyone else had been going through. Much love and many pain free hugs for all of you!

I'm sorry that you're having more pain now. Can you rent a scooter to get around at Comic Con? I'd love to go there some year! I have bad arthritis in my wrists, hands, shoulders, etc so I can never use a pain. When we go to WDW I usually have to rent a scooter, just to be able to get around. I hope that you can make the best of your time there. Let me know if you see any celebrities.



As for me, I've been doing ok. I am so glad that I was able to go on the day shift at work; I'd never be able to make it in to work by evening time anymore. The Adderall is working "ok" I guess. There really is no miracle cure or pill or medication that is going to make us all feel normal.

 

[niftywench]

Hi! Thank you!! The program is working well so far, it's only been a couple of weeks but i feel very hopeful. I live in Quincy MA about 10 miles from Boston and I go to the Joslin too!

Welcome Jenne How is the chronic pain program working for you? My DH has diabetic neuropathy. He sees a diabetes specialist at the Joslin Center in Boston. Do you live in MA? We're south of Boston.

 

[mommasita]

rosanab1031 Wishing you better days.. The timing of flares really sucks at times :hugs:

Glad you are on days SS.. The bone scan was just llllooong. I got injected at about 11:15, had to hang around until 1:45 for it to go through me.. I sat outside for a very brief time, as it is hovering in the 100's, and then waited indoors.. Seems I have so many appts with therapy for my shoulder, my old one and so many tests. I see my Dr next week to get the results.


Hugs everyone

 

[tiggspring]

Hi everyone,

Sorry I've been MIA guess the weather is really getting to me despite the a/c. Its 11pm and still 90 degrees w heat index! I'm so tired all the time . Lots to tell hopefully I will catch you all up soon. Welcome to all Newbies and as always my thoughts are with those who are struggling right now ((((HUGS)))). I keep checking updates even when I can't respond.


Sending pain free vibes and pixie dust to all

 

[mommasita]

Hi everyone,

Sorry I've been MIA guess the weather is really getting to me despite the a/c. Its 11pm and still 90 degrees w heat index! I'm so tired all the time . Lots to tell hopefully I will catch you all up soon. Welcome to all Newbies and as always my thoughts are with those who are struggling right now ((((HUGS)))). I keep checking updates even when I can't respond.


Sending pain free vibes and pixie dust to all

Same weather.. It is all or nothing.. Take care of yourself, and try and stay cool

 

[SeaSpray]

Hi! Thank you!! The program is working well so far, it's only been a couple of weeks but i feel very hopeful. I live in Quincy MA about 10 miles from Boston and I go to the Joslin too!

I'll be going to Joslin this Thursday with my husband. He's been "battling" diabetes for several years; it's hard for him to keep his sugars level.

I love Quincy! After the HBO "John Adams" mini-series came out we went up there and took the tour. I loved it! I love the history here in New England.

rosanab1031 Wishing you better days.. The timing of flares really sucks at times :hugs:

Glad you are on days SS.. The bone scan was just llllooong. I got injected at about 11:15, had to hang around until 1:45 for it to go through me.. I sat outside for a very brief time, as it is hovering in the 100's, and then waited indoors.. Seems I have so many appts with therapy for my shoulder, my old one and so many tests. I see my Dr next week to get the results.
Hugs everyone

I hope you get good results this week.

Hi everyone,

Sorry I've been MIA guess the weather is really getting to me despite the a/c. Its 11pm and still 90 degrees w heat index! I'm so tired all the time . Lots to tell hopefully I will catch you all up soon. Welcome to all Newbies and as always my thoughts are with those who are struggling right now ((((HUGS)))). I keep checking updates even when I can't respond.


Sending pain free vibes and pixie dust to all

Great to hear from you tigg The weather has been brutal. It finally cooled off a little here. It was only in the 80s here today.

I hope that you are feeling better soon. My pain levels have been high the last few days; no idea why. Then again, we never know why, do we. It's like a tag-team wrestling match between pain and fatigue. The days when I have neither are few and far between.

Looking forward to your "lots to tell" once you are feeling up to it.





I hope everyone is doing ok.

 

[tiggspring]

Great to hear from you tigg The weather has been brutal. It finally cooled off a little here. It was only in the 80s here today.

I hope that you are feeling better soon. My pain levels have been high the last few days; no idea why. Then again, we never know why, do we. It's like a tag-team wrestling match between pain and fatigue. The days when I have neither are few and far between.

Looking forward to your "lots to tell" once you are feeling up to it.

I hope everyone is doing ok.

Hi Guys just a quick post to let everyone know that Dr Oz is having a segment on Fibro tomorrow...let's see if he has anything new.

Seaspray my pain levels are way up at night. Leg pain unbearable I'm back to wishing I was Mrs potato head and could just pop those legs off for a few hrs or maybe a night. Fatigue keeps creeping up on me in am. Waking up feeling like each day will be a decent one. Eat, start to settle in a plan for the day then BOOM! Major fatigue where I have trouble staying awake sitting up so back to bed I go about an hr maybe two after I wake up Tag team is great description of it.

Hope all is well with you and everyone else here

Sending pain free vibes and pixie dust to all!

 

[SeaSpray]

Hi Guys just a quick post to let everyone know that Dr Oz is having a segment on Fibro tomorrow...let's see if he has anything new.

Seaspray my pain levels are way up at night. Leg pain unbearable I'm back to wishing I was Mrs potato head and could just pop those legs off for a few hrs or maybe a night. Fatigue keeps creeping up on me in am. Waking up feeling like each day will be a decent one. Eat, start to settle in a plan for the day then BOOM! Major fatigue where I have trouble staying awake sitting up so back to bed I go about an hr maybe two after I wake up Tag team is greadescription of it.

Hope all is well with you and everyone else here

Sending pain free vibes and pixie dust to all!

Hi everyone.

Well my laptop is suffering from a virus. Not sure if its able to be fixed. I'm on my son's tablet right now.

Tigg how are you feeling?

I've been having pretty bad pain this week. Not sure whether its due to the big change in weather or not.

Dh and I went to Boston today for his diabetes specialist appt. His blood levels aren't great but not terrible either.

On the way home we went to one of our favorite restaurants in Quincy. And I'm such a geek I got all excited as we drove past John Adams home which is an historical site. I love American history especially revolutionary war history. That's the best part of living in New England.

In other news, my vacation request for thanksgiving week got denied now we can't go to New Jersey to spend time with my family when all of my siblings and their families. I am fairly depressed about this but its not the end of the world right?

I hope everyone is doing ok!

 

[mommasita]

Tigg: Sending you some good wishes for less pain...

SeaSpray: Sorry to hear that it got denied.. Maybe things will change closer to the date? Are you allowed any switching amongst yourselves?

I am exhausted and just fed up of Dr's appt and pysio appts.. Tomorrow is my first day since returning from vacation that I have NOTHING.. I hope to rest and maybe sit in the sun..

Hugs to all

 

[rosanab1031]

I'm sorry that you're having more pain now. Can you rent a scooter to get around at Comic Con? I'd love to go there some year! I have bad arthritis in my wrists, hands, shoulders, etc so I can never use a pain. When we go to WDW I usually have to rent a scooter, just to be able to get around. I hope that you can make the best of your time there. Let me know if you see any celebrities.



As for me, I've been doing ok. I am so glad that I was able to go on the day shift at work; I'd never be able to make it in to work by evening time anymore. The Adderall is working "ok" I guess. There really is no miracle cure or pill or medication that is going to make us all feel normal.

They actually do have a great disabled services at Comic Con. You can rent a scooter or a wheel chair for a $20 deposit It's just kind of a pain to get through the con when there are SO many ppl. So I just go with my cane. I actually picked up a really pretty custom cut one this year

Glad that your new work shift is working out for you. Wish there was a miracle cure for all of us

Much love and many pain free hugs to all

 

[rosanab1031]

Hi Guys just a quick post to let everyone know that Dr Oz is having a segment on Fibro tomorrow...let's see if he has anything new.

Seaspray my pain levels are way up at night. Leg pain unbearable I'm back to wishing I was Mrs potato head and could just pop those legs off for a few hrs or maybe a night. Fatigue keeps creeping up on me in am. Waking up feeling like each day will be a decent one. Eat, start to settle in a plan for the day then BOOM! Major fatigue where I have trouble staying awake sitting up so back to bed I go about an hr maybe two after I wake up Tag team is great description of it.

Hope all is well with you and everyone else here

Sending pain free vibes and pixie dust to all!

So did anybody get to watch the Dr. Oz segment? I don't have regular t.v. Haha.

 

[mommasita]

So did anybody get to watch the Dr. Oz segment? I don't have regular t.v. Haha.

I didn't.. I often cringe like so when he is on.. I don't know why, I just can't really listen....

 

[rosanab1031]

I didn't.. I often cringe like so when he is on.. I don't know why, I just can't really listen....

Aw. Lol. I love Dr. Oz!

 

[SeaSpray]

Hi everyone

I got my laptop back last night!

Not too much new here; pain has been bearable most days, fatigue has been ok for the most part, but still having to take a nap some afternoons.

Instead of going to NJ to see my family for Thanksgiving, we are going down for a long weekend in October, to be with my family for the 10 year anniversary of my mother's death. OUR mother, I should say. One of my brothers is planning to have everyone over for dinner that weekend, so I feel a lot better about not being able to go down for Thanksgiving. I've already gotten the days off in October approved at work.

I did see the Dr. Oz segment on fibromyalgia. Even though there wasn't any new information it was nice to see it being spoken of in a positive, medical-community-accepted light. Dr. Oz took it seriously, so that was good.

I hope everyone is ok.