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Posts: 1,302
12/31/09 1:55 P

I am personally recovering from a bad flareup. I have not ordered the MORE program yet. I have the regular Total Program and T-Tapp is sponsoring a 30Day Challenge beginning Jan 15. I may see if I can do the regular program.

If not, I will order the More Program. My birthday is the first week of March and I found a too cute, hot to trot turquoise (my best color!) dress at a resale shop.

The birthday present I want the most is to not only be able to zip it but to look good in my Birthday Dress.

What a present that will be!!!

Posts: 1,302
12/31/09 1:50 P

It sounds like something that I would have posted. Shame my memory doesn't work anymore!! lol

I don't remember the name of it, but it will be very easy to get after the holidays. My doctor uses them as does the Fibro & Fatigue Centers. It is located in Colorado.

I will find out the name and repost the link in a few days.

Posts: 91
12/5/09 4:42 P

I bet that you would. I cannot even begin to describe how much info was there. I had all these links open and dog tripped over the cord on my computer and I had covered so much that I couldn't remember where it started. I will let you know if I find it. Thanks. Cat

Posts: 6,211
12/5/09 4:19 P

I guess I was offline that day, I don't remember seeing it myself... we DO have a READING ROOM discussion thread on the list, that has all kinds of info and links... maybe this is something that should be posted there?

...Just a thought. I'd like to see it...
Kathy

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12/5/09 3:33 P

Dear Goddess,
Where do you come up with these gems? Someone, and perhaps it was you, offered information about a compound pharmacy online. when I looked into the site it had more information than I could absorb however I can't remember where it was or what it was called. Do you or anyone else know or remember any info on it? It was one of the SP blogs about fibro and inability to absorb/use T3. I think you are still a goddess. Thanks. Cat

Posts: 28
12/4/09 10:05 P

Hi, I'm new here, but wanted to comment about using a wheel chair. I've had fibro for over 30 years...back before doctors even knew what it was! I wasn't dx until years and years later. My first symptom was weakness and paralysis all over, but esp on my right side. I just felt like I shriveled up. I was bedridden for several days and slowly the movement came back. Since then my right side has always been my weak side. I could go into the grocery store walking just fine, and be dragging my foot and not be able to sign my check by the time I was ready to pay.

I did have to use a scooter about 20 years ago for several months and during that time had to fight to continue to use my legs. It's true that if you don't use it, you lose it. I was probably chair bound for 2-3 months. Shortly thereafter we added onto our house and my husband drew the plans to include larger doorways just in case, but thankfully I've never had to use the wheel chair since.

You talk about losing your balance or fainting. Have you been checked for orthostatic hypotension? It is characterized by a sudden drop in blood pressure upon standing. This can cause dizziness and fainting. I have it and it is a symptom of CFS, if you have chronic fatigue. Or it can be caused from diabetes or even dehydration.

My advice would be to at least try to practice breathing and stretches while in the chair. And when you do stand, go slowly, and if you need to stand for a time, what I do is sway back and forth. For some reason that keeps my on my feet better!

So take heart and keep yourself in the best health you can during this time, so that when it passes you'll be ready to go!

Becky :0)

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Posts: 6,211
12/4/09 9:43 A

I guess what it boils down to is that FM is a "use it or lose it" proposition... LOL

It really is important for all of us to keep doing what we can. That's life, and I for one intend to LIVE IT!

Kathy

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12/4/09 4:34 A

I did end up in a wheelchair because of FM 4 years ago and came out of it two years ago. I worked 7 days a week from 9am till 10 pm doing catalogues and woke up one day unable to move! from that day I coudnt move for pain and had to use a cahair. since then I have improved but I still have to regulate what I do as well as my stress levels which rise quickly. I also cut out caffeine which helped alot too.

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Posts: 1,302
12/2/09 10:39 A

I am sorry that the link would not come up. You can do a search: T-tapp More and then click. Here is the product information if anyone is interested.

The T-Tapp MORE Rehab Program was created for those who have MORE to lose, MORE health issues to overcome (frozen shoulders, bad backs, knee problems, arthritic conditions) or MORE birthday candles on the cake (degenerative spine and joint issues usually increase with time without proper movement). The pace is slower, repetitions are less and exercises are modified from the original Total Workout. T-Tapp MORE is designed to rebuild cardiac health, neuro-kinetic pathways and lymphatic function - as well as deliver body sculpting inch loss and weight loss. This program is excellent for spine and joint rehabilitation along with auto-immune disease such as Fibromyalgia, Chronic Fatigue and Epstein Barr. With obesity at epidemic proportions in the United States, this program was designed to show everyone that we CAN be healthy and fit in less time (all workouts are less than 20 minutes) and without pain. This workout has been well received within the medical community as an important first step in rebuilding healthy blood sugar, blood pressure and cholesterol. The body CAN repair and rebuild if you move it... so move it with MORE and help your body help itself. Take the first step in rebuilding your health, wellness AND fitness with the T-Tapp MORE Rehab Program - you'll get MORE results in LESS time.

I was diagnosed with adrenal fatigue, but spent all of last year on the couch or the recliner barely able to feed and care for myself. Now that I am receiving treatment I am doing much better. You all inspire me so much, because through so much pain and frustration you all keep going and have such beautiful spirits!

Posts: 91
11/30/09 8:50 P

How terrifying was that? I only get that way for a week or two at most and it is so scary. Good for you. Keep up the fight.

Posts: 489
11/30/09 7:58 P

I was in a wheelchair for a year after developing Reflex Sympathetic Dystrophy on top of the Fibromyalgia. It has been a long, hard fight but I am now walking unaided. My Rheumatologists calls me his miracle patient.

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Posts: 39
11/28/09 5:48 P

Wow, I am so happy I found you! Reading your notes I am in your shoes only difference, Im not in wheelchair yet, but feel I need it. I dont look forward to snowtime as I have a very good relationship with the concrete floor or any floor for that matter (none are soft enough!) My bad knees are giving up on me! And so very painful, I need both reconstructed, but I am not ready for that- I have had 3 knee procedures not pleasant. Especially if you have no sick or vacation time. I am dealing with big time damage via back, my Dr's dont understand my endurance. Migraines and Diabetes type2, IBS, Chronic Fatigue, high blood pressure- etc etc etc.... my thing is the severe pain ALL over the place- I thought of disability but I cant imagine moving forward with the "pay cut" I am torn as I love to work, esp if my boss doesnt come in
;-) everything runs well, I tend to commend and praise my team, while he crushes.
My husband is a motivator and very sympathetic to my needs and I tell you we do tons of crying together! He many times feels he isnt doing his job as nothing I have been doing via my Doctor/Advanced Pain Facility is working. AND I work full time 3:30-12 midnite shift I drive to n fro 45 min. I am a a nite supervisor and collector for Music and Arts, there 12 yrs. not been easy as my Manager is not compassionate or sympathetic in the least! (too much testosterone) I got a dog (Jack Russell- yes very hyper who loves to hunt n run) I think I have made hm a lap dog to a degree- but I must walk him daily. even if for 1/2hr at a time. I can once in a blue moon do 1 hour but its been some time. Mind you I dont walk fast just lil brisk depending. Today looking at the site I reminded myself I have a treadmill my husband so lovingly got for us, a real good one. I can try n use it and plug my music on for motivation.. new goal..
hoping to keep in touch, any ideas on disability/femla, my job has long term disability but youmust by out 90 days before that kicks in, meantime how do we pay our bills?? And how to get power chair before I really need it. (hopefully before surgery) yikes hope I didnt bore you! or scare you away. I am new to this and havent checked if any loss of pounds yet. will wait little as my husband just got back from business and we went to Ihop 2 times - ugh mistake. Today we did good I made tilapia, collard greens with roasted potatoes/sweet potatoes - it was yum. and he ios sick eating chicken noodle soup. but had to dgo for the food. haha.. gotta love him. Hoping we can keep in touch I am here for you always...
Write soon!
Diana Ryan

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Posts: 127
11/28/09 9:15 A

MAMACAT: What is the time limit for Celebrex? Did they keep track of your kidney function when you were on it?
Naproxen is an anti-inflammatory and is often used for pain I think. Sometimes it can bother your stomach so make sure you take it with food - well or "as directed" by your Doctor. Sometimes with fibro a change in medication makes a big difference because our bodies can get used to one medication and it gets less effective.
Fibro is a scary thing but it is not "in your head'. Don't ever let anyone make you feel that it is. It is nasty and sometimes it feels like it steals bits of us - bit by bit. Usually symptoms wax and wane though. If you can manage to keep stress levels and "guilt" levels low, you will probably find you have more good days. It is hard when we can't do all the things we used to do and "be" who we used to "be" and people look at us like we should be able to.
One of my best things for keeping stress down is knitting. I think because it is a repetitive task it is almost meditative. If you can't knit, maybe you could try to learn. There are great sites online to learn from with wonderful diagrams. There are tons of free patterns too. I knit mostly dishcloths, hats and scarves and am working on a baby shawl now. They make great gifts too! People love them.
Crocheting is good too but it bother my wrists. Knitting helps keep my hands and fingers from getting stiff too and it helps my shoulders because there is just a little movement in them when I am kitting. I wish I had kept track of how many dishcloths I have knit. It would be in the thousands by now!
I hope the Naproxen helps you.
BB

Edited by: BB2693 at: 11/28/2009 (09:20)

Posts: 43
11/26/09 10:59 A

it gives me so much reassurance to read all y'alls responses! I seem to constantly have new symptons and sometimes the tests come back negative and then I wonder...is it all in my head? The last specialist i saw for the syncope tpld me "I'm sorry but its just part of the FM in your body". SCARY but at least I know now.I do sometimes use the power scooters and probably would use a chair but cant in my house.I definately would get out more if I had that choice.I know I'm caught in a catch 22 because I hurt so bad cant do anything so I dont get out which means I get little exercise and I hurt!?! But I'm hanging in and trying.My MD just put me on NAPROXEN as I am at the time limit for celebrex.Has anyone had any success with this new drug?

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Posts: 31
11/22/09 7:19 P

I have had a manual wheelchair for many years, I try not to use it, but if I am going to be away from home for very long it comes with me, I simply cannot walk far anymore because of the fatigue, and then the pain really kicks in. I find that anymore I just don't go out much at all.

Posts: 91
11/22/09 5:33 P

Often I have a flare up that will cause me to go to bed for a while. Usually four days to a week. When these spells are extended I use a walker with a seat so that I can sit and rest. That gives me confidence that I won't just fall over with fatigue. I also have a horseshoe pillow that helps a lot when my head is too heavy to hold up. Plenty of rest and good eating and I recover. It doesn't take much to put me back to bed though. Absolutely terrifying feeling. Scares my husband too. I can tell although men handle fear somewhat different than woman do.

SparkPoints: (25,951)
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Posts: 3,106
11/22/09 4:27 P

the page wont come up...?

Posts: 1,302
11/18/09 11:27 P

I haven't had fibro that long and don't know that much about it. My first response would be to agree with the ladies who've suggested you check w/the doctor or another doctor and have other tests done.

Since you've asked about exercises or an exercise program I am putting up a link to a site called T-Tapp. All of her programs are designed to be rehabilitative but she has a program designed for those who have special health issues such as fibro.

Many of the exercises can be done sitting in a chair.
Her site is a good one to look through. I have some of her dvd's and she is a wonderful woman and has some great exercises.

https://store.t-tapp.com/products/T%252dTa
pp-MORE-Rehab-Program-DVD.html

Posts: 127
11/17/09 9:26 P

That is for sure Kathy! The world is moving too fast anyway! LOL One step at a time. One day at a time. That is the only way to get though the day, the week and the pain.
BB

Posts: 6,211
11/17/09 8:22 P

...don't I wish!...lol

the thing about FM is that it can mask other issues~ and ALWAYS contributes to the severity of other issues~ so it gets difficult to tell at times what is causing what...

When ever I get a new or unusual symptom, I take it straight to my doctor. Sometimes it really IS something else (like the gallbladder I had removed 2yrs ago...) and sometimes the tests etc come back negative, and you can be pretty certain that it's the fibro.

You just have to take it one thing at a time, and keep moving... even if it IS slow! Besides, at a snail's pace, you have more time to smell the flowers! LOL

Kathy

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Posts: 78
11/17/09 6:23 P

I had horrible weakness and numbness in my legs. Turned out to be compressed disks. The pain in my shoulders and upper back was due to overly tight tendons in my neck. A lot of what I attributed to FM was really soft tissue/skeletal problems. I'm having them corrected. But, it seems every time I get rid of one thing I find more things that the other things were masking. It's never ending and really disheartening. I'm told there will be an end to it. OK, can I get that in writing.

Posts: 6,211
11/16/09 8:37 P

Our local PBS station has a TV show called SIT AND BE FIT... maybe your local public broadcasting company has something like that... or, you could request your dr to refer you for physical therapy?...

...good luck!...
Kathy

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Posts: 27
11/16/09 12:17 P

Hi I.M. Magic, I know what you mean about those darn motor scooters they have at the store. Before I ended up in the wheelchair I would sometimes end up having to use them. It's amazing how some people won't get out of your way either. As for exercising, I wish I could find something I could do in my wheelchair. I can only stand for maybe 10 minutes (aat most) before I start to lose my balance and start to fall. Any ideas?

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Posts: 6,211
11/16/09 11:46 A

FM is a bit of a Catch-22... muscles atrophy when they're not used, and with FM and chronic fatigue they either hurt or don't want to work...

I've never used a wheelchair, though there's been a time or two that I had to use the power scooters the stores provide... rare, because a)I really hate those 'one speed only' monstrosities, and b)I really work at it most days so I don't have to. It's just every now and then my diabetes decides it's going to mess with the FM... Yikes.

I do know that the only way you get stronger is to work at it. With the FM you just have to pay attention to your body signals so you don't overdo... easier said than done! LOL

Kathy

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11/16/09 10:55 A

Thank you everybody for your responses, suggestions, and prayers. I really appreciate everyone's support. All of a sudden I don't feel so alone in this. I have a lot to think about and different things to check out with my doctor now. God bless all of you. You've all cheered me up and given me hope that perhaps I won't always be in a dead end rut the way I am now.

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Posts: 108
11/16/09 10:14 A

not in wheelchair but I was Bedridden for a period of about 8mths from the fatigue due to fibro. It came on slowly over a period of months. first i was just so tired i couldnt wake up. I thought maybe i was sick so I just rested. It lasted about 2weeks and then it would be gone, just like that! Then a couple of months later the process would repeat itself, but I always got better after a couple of weeks. Then one day it started and lasted 8mnths! The fatigue was so incredible that when I would get out of bed and walk the 20steps to and from the bathroom I would be out cold for another 12 hours! My mom and kids had to do everything for me. I was so depressed too. Then slowly over time it lifted again, I am no longer bedridden but I have to pace myself when I do things, if i do too much it puts me back in bed for a couple of days. I wouldnt say i felt weak at the time....just so severly fatigue i couldnt move nor did i want to! Have u been tested for M.S.? That was what they tested me for when i was so tired i didnt want to move. Please, whatever you do, dont give up hope and dont give up on life! No matter if we are bedridden or in a wheelchair, we are all valuable. I know, its easier said than done, when you are in the middle of a crisis. Remember those of us here, we understand your struggles and you are not judged here. come back for help and support anytime, vent if u need to! We got your back!
Feel free to email me anytime, would like to help you throught this if i can be of any help. Take care, I will pray for you.

Posts: 103
11/16/09 8:36 A

I ended up in a wheelchair in 2002 but it was because of the severe chronic fatigue that came with fibromyalgia. I couldn't get out of bed for over a couple of months; then I could transfer to the sofa for short periods of time. Getting to the bathroom or kitchen to get food was all I could muster for the day. I was weak and scared because all my muscles were so severely fatigued and the knowledge that the heart is a muscle and was also tired made me wonder if I would live.
I stayed this way for a year or so, not being able to drive, too weak to speak and became an unemployed burden to my daughters who were in high school at the time.
I found a knowledgeable doctor who started me on weekly injections of glutithione and upped my ATP levels with two supplements she alone sold called Fibro-AMJ and ATP-20. After another few months I was able to stay awake for periods of 5 or 6 hours.
Time passed doing these injections/supplements and I graduated to a wheelchair, then a walker that had a seat so I could get out (not drive yet) and be a person in the world. Then I used a cane and started driving short distances about 2004. The cognitive depletion left me low in self-confidence; I wasn't able to dial a phone until 2008 without mistakes. I'm still fatigued and in pain but its much more manageable. My confidence is gradually coming back.
I took the injections for about 8 months to a year in the begining. I'm still taking Fibro-AMJ and ATP-20.
I wasn't overweight when this all started. I led an active life, holding down 3 jobs while being a single mom to 2 daughters, one with autism. The weight gain happened from inactivity and some of my medications. I've been able to exercise but still have trouble losing weight. I've been the same weight now since January 09. Very frustrating.
But I'm a far distance from the wheelchair now. I hope you recover from this horrible fatigue like I seem to be. It took me years but my advice:
keep a sense of humor. Take what God gave you today and do the best you can with it and pray for more for tomorrow.
Cheers,
Val

Edited by: VALMARK at: 11/16/2009 (08:39)

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11/16/09 7:58 A

BETTER.ME.2009: I did not end up in a wheelchair but I did become so fatigued and weak that all I was doing was dragging myself from my bed to the couch and then back to bed. I could not climb a flight of stairs without stopping to rest. I was getting short of breath with the least amount of exertion. Having a bath and washing my hair was my activity for the day and took all the energy I could muster.

I saw a local Rheumatologist who said it was just the Fibromyalgia and a bit of osteoarthritis. He dismissed me with six pages of exercises I was to start. HOWEVER - I KNEW it was NOT "just" Fibromyalgia and arthritis so I went to a diagnostic clinic. The Rheumatologist there actually listened to me and on examination heard a loud heart murmur. In the end I was diagnosed with a Stage Four Mitral Valve Prolapse which I now know is common in Fibromyalgia and Hyper Mobile Joint Syndrome. There was more blood regurgitating or flowing backwards, than there was being circulated through my body.

I don't know how you would go about introducing the topic to your Doctor, but it wouldn't hurt to look into it. I do not believe I would be here now if I had not had the valve repaired. Luckily, there was no heart damage and no heart enlargement in my case. I am much better now although the Fibromyalgia has been quite bad this summer and fall. I have been out and about quite a bit lately, as my daughter is getting married in January and I am surprised at how much I am actually able to walk around in the malls etc. I have to pace myself though and rest when I get tired and I do have a fair bit of pain but the fun and excitement of an upcoming Wedding help me forget about it somewhat. I have crashed a couple of days.

I have had a few nights when I haven't slept so I try to sleep the next day if I can... but on the whole my life is so much better than it was before the valve was repaired, there is no comparison.

You might try looking up Mitral Valve Prolapse in a search and comparing the symptoms to how you are feeling. If you have the symptoms maybe you could print the information out and take it to your doctor if you think he would be open to that. I know my doctor was very glad that I had gone to the Diagnostic Clinic because he was at a loss as to what to do to help me.

Apparently heart murmurs are not always easy to hear and sometimes they have to listen when you are upright and laying down. The GP who examined me earlier that day did not hear it. My heart was beating so hard when the Rheumatologist heard it, that the paper gown I had on was crinkling.

I wish you the best of luck and keep us posted on how you are doing. If you would like, feel free to contact me by SparkMail.
BB

Posts: 67
11/16/09 7:43 A

Yes, I have been in and out of a wheelchair, but it has always turned out to be something else rather than fibro. So it is critical to be checked out thoroughly by a doctor to make sure it isn't something else. Thoughts and prayers go your way!

Posts: 1,309
11/16/09 5:48 A

I have OA and Fibro and, yes, some days I am very weak all over. The pain is constant but so far I have been able to gut through it.

Prayers are being sent that you find relief very soon.
Blessings, Moira

Edited by: MOIRA48 at: 11/17/2009 (06:14)

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11/15/09 10:34 P

I was wondering if anyone else has ended up in a wheelchair because their fibromyalgia had gotten out of control? About 5 months ago I was walking but had knee and back problems but they were bearable. Very quickly however I started getting weak and ended up first in my grandfather's manual wheelchair and now I don't even have the strength to wheel myself around in that. Fortunately I have been able to get a powered wheelchair. I was just wondering if anybody else has gone through something similar and does fibromyalgia make a person weak or is it just painful? I have never heard of anyone get weak as quickly as I did. I have become very depressed because it seems like my life (at least as I knew it) is over. I can no longer enjoy going for walks, dancing, or going on day trips with my dad who is a tour bus driver and used to take me on all kinds of great trips. Whenever I mention this to dad he says (not in so many words but still the same meaning) "get over it, don't look to the past, it's over and you can't do anything about it" That does not make me feel any better. Right now I can't even exercise as I don't have the strength to exercise (even just stretching) as it hurts too much. If there is anyone out there that has gone through something similar, I would appreciate finding out how you are dealing with it. Thanks.

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