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TGIF*****10/5/2012 *****ROLL CALL ***NEW MEMBERS ALSO....
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dollbug posted:
TGIF....ROLL CALL....MiMi in NC...and every Friday....is ROLL CALL...for any and all members who care to stop by and update everyone on how things are going in your life....we want to hear from everyone...and we invite those of you who have been *lurking* here to come on down and join us....we want to know more about you and how you are coping with the wrath of the dragon, aka FM each day....

I find it interesting that we have a large number of FMily here....and so few actually post....so IF you are one of these who has not posted recently....here is hoping you, too, will post today and let us know how things are going for you.

OMG....we are already into Day 5 of October....and the beginning of the holiday season....store are getting ready with Christmas decorations and toys and all sorts of things....we will soon have the music and lights to go along with it...Christmas is my favorite time of the year...Funny that I have almost gotten my grandbabies shopping done...yep...they are most important...so I wanted to go ahead and get this part out of the way...I did some internet shopping this year...got 30% off of my order...a good discount...it was not as *easy* as I thought it might be...but at least I got it done...

Welcome to the new members who have joined our unique FM support group...I am glad that you have found us...as I think you will find some good *tools and tips* that might help you cope better...it does take a trial and error process...which does take time and effort...there are no quick fixes or one magic pill which will work that I am aware of...we are all different and what works for one...may or may not work for you...but hang in there...as I am sure you will find something that will help you cope better.

Be sure and check out the *tips* and *resources* that you will find to the right of this page...perhaps it will take a mattress topper, a heating pad, some gentle exercises or stretches...vitamins and supplements (what I have found to help me)...Stopain Spray...(good stuff from walmart)...a hot shower at night using lavender bath salts in a stopped up drain to help your body to rest...Sleep is so important to all of us FMers....keeping your stress as low as possible...as stress increases our pain..

Vitamin D....so important for a lot of us FMers...be sure and ask your doctor to check your Vitamin D level...low Vitamin D can cause some of us to have additional pain and can affect other illnesses as well...be sure and get some natural Vitamin D, if you can...this does make the body feel better...soaking up some of the warm sunshine makes the body feel better...

That's my story and I'm sticking to it....

Have a good Friday....


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
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angelswife responded:
Good Morning, Mimi!
The rain is done for the moment---it will come back tomorrow night, though, and pour all day Sunday. Then it will turn much colder...They have even hinted at a few stray snowflakes Sunday night, omg. I don't think I'm ready for winter yet!

It's supposed to get into the high 70s today. I want to sweep all the leaves off the roof and the deck, and maybe go for a walk later. It depends on how I feel after PT, though. I have to go this morning, and I'm not looking forward to it.

My ankle has been so tender this week thanks to the weather; and the nerve damage doesn't help. It has hurt too much to wear the brace, so I don't put it on unless I'm going out. The thought of getting massaged and stretched is making me wince really hard. I don't want anyone touching it right now.

Husband is watching TV, because he has the morning off. I have no patience with TV. He is avidly watching a story about bacon, if you can believe that. I never knew bacon could be newsworthy, lol.

I need to fix breakfast and grab a shower. Then it's off to PT...Hopefully I won't hurt too much after and I can get the sweeping done. Hope everyone has a good day!
 
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albatross responded:
Hello,

I took most of this from my post the other day to Dr. Pellegrino...

I have been procrastinating joining a support community because I never knew what was wrong with, but I just knew I didn't feel good...

Wednesday, after a few visits since retiring from active duty in October of 2010, my PCM at the VA Clinic did an exam, and diagnosed me with Fibromyalgia. I am still not sure how to feel about that because I was always under the impression that a "syndrome" is not a real diagnosis and is not really recognized. It just means that you have a whole bunch of symptoms that can't be explained, so we need to call it something so you will go away... I question the credibility of the diagnosis, even though I do have the symptoms, and everything else that can be ruled out has been.

I had Mono in 1992, and was infected with a severe case of Epstein Barr Virus in 1998. I have been telling people and doctors for years since then that I have never felt right again after that, and that was when my symptoms started and just began getting worse.

I am a 23 year military veteran, now retired and 44 years old. My symptoms:

Severe fatigue not explained by other conditions.

Memory or concentration trouble

Muscle pain

Multi-joint pain/burning without swelling or redness

Unrefreshing sleep

Exhaustion after physical or mental activity

Mood changes/irritability

No one has been able to help me. I firmly believe that there has to be a link here between the Mono/EBV and FM, but I can't find any supporting documentation or studies to confirm this.

All I know is that my quality of life is degrading more and more every year, and I am so tired of being tired, and hurting with that feeling of intense sleepiness that makes it so hard to concentrate... I go to bed and wake up feeling like I haven't slept, I wake up often at night and if I sleep too long even though I feel like I could sleep for days sometimes, it makes the fatigue and pain worse.

I have had significant service related injury to both of my knees, and a have had a total of 3 surgeries on each knee (2 scopes with debridement, and patella re-alignment), but I am still left with moderate to severe patellofemoral pain due to both my kneecaps not having any natural padding left and causing pain when the patella rubs against the femur. This is not correctable with any more surgery, and my knee joint is ok, so that along with my age rules out knee replacements. I am stuck with pain management to control the pain so I can continue to work full-time. This medication also helps with the FM pain, but the fatigue still makes me miserable.

I take Flexeril and bedtime that helps some with the pain and allows be to get a little more sleep. Otherwise, I can go to sleep ok because I am exhausted, but I wake frequently with pain. My pain medication that I have been on for quite sometime is Vicodin. I tried the longer lasting 12 hour pain meds, but I did not like the way they made me feel and the fatigue which is already bad, it made worse. I also like knowing from my body when I "need" to take it rather than just taking something every 12 hours that is designed to never wear off... When the pain returns then I take the med... That is about every 6 hours...


I take a multi-vitamin, Vitamin C, Vitamin B-50, Garlic, Flaxseed daily. I also take Panax Ginseng, which will give me more energy, but I can't take it everyday as it raises my blood pressure that I take meds for.

I see some other medications that are mentioned for helping with fatigue, but I am not keen on taking an anti-depressant when I am not depressed. My symptoms are physical, and the sleepiness is what I am having a really hard time with.

What meds that are discussed relating to FM can truly help with the fatigue part? If I could deal with this part a little better it would be easier to cope with everything else...

Thank you!
 
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angelldakota responded:
Good morning all... It was an early morning for me and now that I have to stay up I want to sleep lol... So I moved my laptop to the outside table on the porch and I am enjoying the nice 69 degrees for we still have it hot during the day and I can't spend much time in the heat... I am in heaven and wish it could stay this way all day.. Oh well... won't get my wish there... lol... not fall in AZ... I think it skips it lol... But my coffee is great and now I have something to do to hopefully keep me awake lol...

I have finished my cardiologist tests... All came back good... My murmur still will give me some trouble if it gets troubled by the stress of all the other illnesses... but other then that my heart checks out pretty well... My cardiologist, neurologist, gastereoroentologist, and primary dr had their little meeting and all agree that the things I am going thru are my MS, FM, and Parkinsons mixed together... Something I am doing everything I can do for right now and we just need to pray I pull out of the flares... They have checked my legs for circulation trouble twice and I guess it was worth all the tearful pain... I am doing well... The only thing new they found was a paper thin build up on the bottom outside wall of my lungs... but they all say it isnt anything to worry about....

As for the mysterious edema... they have decided it is due to the stress of all my pain and illnesses... My body goes thru a lot daily with all the structure damage, nerve damage, and muscle damage... Adding to it FM flares, and MS is out of remission and on the fast track... and the Parkinsons... Well my body is a wreck but my soul is stronger now that I don't have to worry about why everything is happening... lol... I pray atleast my soul and spirit stays strong... My manic depression has showed it's ugly face in the major form of aggression and emotional explosions... but I am on a new med now... again the lamictal made me ill... so it is on my allergic list now... I am on tegretol which also helps my Parkinsons and MS... And if I can become less anxious and manic and explosive I will be ecstatic lol... I think alot of my mania and anxiety came from my not knowing what was happening to me so now that I know better... even though it isn't all the greatest news to know the MS and Parkinson's are on the rampage and this FM flare has lasted long enough... But I have answers and that much helps... Now with the support I have with my family and here... I will survive no matter how long this spell is... even if it is for the rest of my life which they say it might be... They say the prospect of positive change is very rare at this point... But I keep being told that I am a survivor... And I know I am... So I hope to be back more often and able to help others as much as you help me...

take care... bless you all with as painfree a day as you can have... Don't forget I am not the only survivor here... we are all strong in spirit and soul... We are all survivors... We are in this together and can find the inner peace we need to deal with this...

Love... Jan/Dakota
When it Rains... It Signifies Life... There is Hope... It Strengthens My Soul... And Brightens My Spirit... Think Of Our TRIALS in Life as RAIN...
Written with love by Kelly and Jan
 
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sp2001 responded:
Good morning Mimi, angelswife, Albatross, angelldakota and everyone else.... Hope today is going good for all

I went to my psychiatrist appt. yesterday, first time there since FM diagnosis. We discussed FM and how it makes me feel physically and emotionally. I have recently started meditating, and said that I can't seem to "clear my head" while doing this. However, I DO notice a difference in breathing (deeper) and feeling a bit more relaxed. My Dr. said that just these two things are helpful and it's ok if I can't totally clear my mind. Every little bit helps

Today is overcast and raining on & off. Yuck. So, I'm working on distracting myself from aches & pains. My kids (ages 12 & will be off Monday & Tuesday, so we have a four day weekend! Hopefully it won't rain too much, so we can get outside and enjoy it.

On Saturday, I hopefully will be going with my brother (age 27) to his first psychiatrist appt. He has been battling depression since his late teens. I see a lot of myself in him, and have been trying to help and (gently) steer him towards a Dr. This will be a breakthrough, so please cross your fingers for us!

Wishing everyone a wonderful day! *hugs*
Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting 'Holy sht! What a ride!' ~Hunter S. Thompson
 
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dollbug replied to albatross's response:
Hello and welcome...MiMi in NC...I wanted to comment about the chronic fatigue....I have had FM since 2005...and with it I also have the fatigue...I have not found anything that has helped me with mine...the doctor tells me that there is nothing that will improve this...I continue to try different vitamins and supplements though...I tried the ribrose which is suppose to help...but I just recently found out that I probably did not take a large enough dose of this..

I am now taking an energy supplement...and I think I can tell a slight difference...I have not been on it long enough....as I know it takes at least 6=8 weeks of whatever we try to get the full potential of what it might do....

I also have knee problems due to an injury I had back in the early 80's...I have had 4 right knee surgeries...I also have had the synvisc injections several times in both knees....which has helped me a lot...I also take a joint supplement daily which I know helps me as well...

Sleep is very important to us FMers also....if you can manage to get enough of the right kind of sleep, half of my battle for the day is so much better...taking a hot shower at night using lavender bath salts to help my body relax right before bedtime helps me...

I would like to encourage you to be sure and ask your doctor to check your Vitamin D level, if you have not already done this....low Vitamin D is common for a lot of people and it can cause additional pain for some of us as well as affect other illnesses too, according to the medical researchers...it is a simple blood test BUT you MUST ASK the doctor to check this...as it is not included in the normal bloodwork that the doctors do...

Good luck and take care.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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Teelady1 responded:
Good morning! Happy Friday to all!

I've been MIA for a few weeks. I was out of town for a few days with limited internet access.

Our weather is changing here to cooler temps - and I seem to be feeling all the changes in my hips, and knees.

Sleep has been pretty good this week - except for last night. Only got a few hours of sleep. Yawn! Really dragging today. Hoping for better sleep tonight - and I can sleep in a little tomorrow morning.

Wishing everyone a great weekend with little or no pain - and good sleep!
 
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katmandulou responded:
Hello FMily - Happy Friday!

It's warm here, no, hot really! They're saying over 80? today - it's 76? at 1:30pm - but it will be 56? tomorrow. How can anyone feel good with Mother Nature is constantly changing her mind?

The big Birthday Ball for the town in which I live was supposed to be Sunday night, but we had less that 50 tickets sold, so it was postponed til the spring. I'm not sure I have the energy to stay on the committee. Has anyone else been forced out of a volunteer committee? Another person decided she was going to do the marketing for the Ball herself, and that's the result we got. Marketing is my strong suit, and I'm sure I could have done better. Water under the bridge"026

I saw the dermatologist Wednesday, and she wanted to get the blood work results from my PCP. My thyroid is fine, which means I'm losing hair due to menopause or stress. After yoga class, I went back to the lab (third time in a month!) for another 5 vials to be drawn. DH (and a few friends) said, "It's stress"026DUH!!!" How does one get rid of stress? I wish I could take a pill to take it away!

I'm glad to see so many people up and at 'em today. I got up a little early and did the 9:30 yoga class. My back has been achy, and I'm taking the extra med the doc gave me. I need a days' worth of sleep, then I know I'll feel better.

MiMi, it's good to see you'r feeling better. As for where the year has gone, I'm wondering that too!!

angelswife, you're making progress, so don't push it. Even tho' you know the pain is from the weather, you're better safe than sorry. Where can I tune into the Bacon Channel? LOL

Albatross, welcome! It looks like you've had it pretty bad along your life, I hope you find the friends and information you need here.

Jan, it's nice to see you too! Glad your tests came back good. I wonder how much of what we go through is stress related? See my hair story above!

sp2001 and teelady1, it's good to see you too. It's good to know that some people in the FMily are finding ways to cope.

I wish you all the best day - and best weekend, you can possibly have!
Lou
 
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albatross replied to dollbug's response:
Dollbug,

Yes, thank you for the suggestion on the Vitamin D. I have another apt with my PCM soon, and I will make sure to ask him for that. My Orthopedic surgeon did try a few of the Synvisc injections a few years ago. He was skeptical for it helping the type of pain I get because that shot is designed to cushion the joint, and would not necessarily help with the bone on bone contact that I have... The only relief I seemed to get from it was when they mixed Lidocaine in the shot that numbed the pain for several hours, but when it wore off the pain returned... He has mentioned the new "partial" knee replacement that just replaces the kneecap with a synthetic one, but he said the stats on how well the synthetic kneecaps are holding up is not really available yet as this procedure is less than 5 years old. He did not want to recommend that, as he does not want me to have to endure more surguries than necessary. The re-alignment procedure (Fulkerson Method, and actually performed by him, also known as a tibial tubercle transfer) fixed the mal-alignment problems I had in both knees that caused my kneecaps to sublex/dislocate, but it was a long recovery with a lot of PT for 6 months each knee. The first 8-10 weeks was 0 weight bearing, and I suffered a blood clot during one of the procedures and has to go back down for emergency surgery that started the healing process all over again on my left knee... Allowing this to go one for so many years is what caused the damage, but it is too late to do anything about it now... It was just one of those things being int he military, you sucked it up, dealt with the pain and kept going... That's fine when your body is young, but now I feel it a lot more. Doesn't help when everything else hurts, and I have such a hard time accepting why it does too...
 
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maggiethedoglover responded:
Good Evening MiMi and all of my fibro family,

The hawk is in the air in Wisconsin (that means it's windy and cold). We had a roofer scheduled to patch some shingles on our roof today and he backed out. We have a 2 story duplex with a full attic so it's high up there. The wind hit him and he came right back down. He'll try again tomorrow.

Our family is blessed to be together. My DH, MIL and I live in the 3 bedroom lower and my son, DIL and 3 grandkids live upstairs. Ages run from 11 to 90 and cover 4 generations. It's great all of the time but especially at the holidays. It's like having 2 big ovens and 2 microwaves. My son and DIL have taken quite a load off me after a couple of holidays ended with me in pain and in tears. Couldn't do it without them.

The weather here seems to have affected my pain level and it is an unusual day that I don't need a nap but I am fortunate compared to a lot of you who suffer much more and don't have an extended family to support them.

My hope and prayer for all of you is that the holidays are easy on you and that you get the help that you need, from your family, friends and doctors.

Soft hugs to everyone,

maggie

Life is a shipwreck but we must not forget to sing in the lifeboats - Voltaire
 
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foreversore responded:
Hello every one! I'm checking in late today. It has been cold, dreary and rainy here today. It has been hard to stay warm and I am so stiff with cold. I spent most of the day in bed under the electric blanket snuggled up with my little dogs. Their body heat in addition to the heat from the blanket helps so much. It was 86 here yesterday but the high today was only 54....such a drastic change, its bound to cause a flare so I need to pull out all of the stops. The nights are going to be getting very cold. DH had to bring in my plants because of a frost advisory for the next 3 nights. Fall is definitely here all next week the highs will be in the 60's with lows in the 30's and 40's.

I am getting a little further along in the SSD/SSI process. I have appointments to see 2 of their doctors this month so I am hoping to get their decision by next month. I feel as though I have enough evidence to be approved, but I'm not counting on it as so many people have had to fight too hard to get their benefits.

I have quite a few things to accomplish around the house this weekend and am hoping I can pace my way through it all and get it all done. I hope every one here has a safe and pain free weekend. It was nice to see all of the posts today and I hope I can be on more often.


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