Kathy and Ann, consider adding about 800 mgs of magnesium glycinate to your daily diet. Your muscles need the magnesium to heal and it also works very well on the RLS.

For my carpel tunnel, I went to my Osteopathic Dr. and he got rid of it in 3 visits, with manipulation. The secret is to get the inflammation down in the muscles and nerves going through the tunnel, not cutting the tunnel bigger........

I wish all of you well and hope you manage to have pleasant, calm Holidays.. *and keep your chin up. It helps your posture!*

neen

Katazz- thanks but thinking up this topic (which I really didn't do - I just got it moved to its home here) was not just a nice thing to do it was a NECESSITY when so many of us were struggling with issues that affected our ability to do the things we love one of which is quilting, I always hate to list off my problems because I feel like it is too much and no one would believe my list. But hearing yours, I think we have things in common - some differences but a lot of commonalities. I have obliterated vertebrae - two thoracic and one lumbar. The lumbar one is the only one that really is a problem because it is the one closest to the sciatic nerve. (If any of you do not know about the sciatic nerve - just hope you never have to learn. It is a gift that keeps on giving --pain that is and when it hits you feel like someone kicked you ) I also have restless leg syndrome and severe leg cramps which mainly strike at night when I am trying to sleep. I have never been diagnosed with fibromyalgia but sometimes wonder if that may not be a part of some of my aches and pains. In addition to those muscular, skeletal problems, I have irritable bowel syndrome and chronic anemia. Medications for one are contraindicated for other of these problems and all medications must be monitored for the possibility of esophagus or stomach irration that could cause bleeding.

Now just so everyone is clear, I don't run through that list lightly or for any special sympathy. I face each day and try to make the best of it, but there are days when getting out of bed is a chore and others when I can whip through a dozen things and not notice what all I have done.

Each of us must face our issues and deal with them in the way that seems best to them and for their situation. But this much I know --- getting to know the rest of you who deal with similar issues and having the support of a group like this has meant so very much to me. without the support I get here, it would be very easy to say the heck with it and succomb and stay in bed.

So I for one want to continue to know what is happening with all of you who have posted on this thread. What works, what did not work and what the interactions between syndromes or the treatments that make things better or the ones that make things worse. Only when we can get that type of information can we figure out what will work for each of us. so keep on posting and also keep thinking about the others in this group - those good thoughts do help even in ways we least understand.
Ann in southern Texas - who choses to live there for the weather that makes life a whole lot easier

gone

I have had fibro since before they had a name for it. My first bad flare up was when I was 17, nearly 40 years ago now!!! It has come and gone over the years, and for a while I thought my joint pain was gone. Then I got muscle relaxants for a seized neck and realized when I went off those, that I was simply blocking the pain.

When My current (and probably permanent at this point to one extent or another) started about 12 years ago, I was lucky to find a rheumatologist who was able to diagnose me immediately. In part because of the length of time I had been suffering from it.

Exercise is a huge component of remaining functional. I also take muscle relaxers, anti-inflamatory and an anti-depressant. It took several years to get just the right combination to give me functionality without making me feel too doped up. But since I am now functional and no longer suicidal dealing with all the pain, I can easily live with it. If one thing doesn't work, try another. Or a different rheumatologist if necessary.

HTH

Bev in NC

Eileen, there are several theories about how fibro begins. One of the theories is that neck trauma can start it.

I hope you can get relief from your ruptured disc and bone spur.

I started Lyrica recently. The morning after I took the first capsule, my pain had decreased.

Unfortunately my fibro symtoms are mostly in my neck, along with the ruptured disc and bone spurs.

I'm looking into endoscopic surgery. I've read about too many people who's pain was worse after surgery.

Good luck with finding some relief, Sharon

Eileen, fibro is a disability that ebbs and flows, as it were, and you will have bad days and some not-so-bad days....... When you add anything extra to the mix, like surgery, it depends on if your's is flaring at the time, but it can amount to "too much" pain. Having said that, it might not be a traumatic enough surgery to flare it beyond what you can stand.

The trauma that my body is mad at me for, now, is my having to have very aggressive amounts of PT on my right shoulder and elbow. (from taking a suitcase out of the back of an SUV in Mar!) I was in PT from May-Sept. I also had many exercises for it, to do every day. I had 3 really bad episodes, during the PT, because it was "too much," but I figured if I was going to suffer anyway, I'd shot the moon on getting rid of the shoulder/elbow pain.... (The shoulder was almost locked when I started the PT. And a person can't quilt like that, so it was painful but a no-brainer)

So, you might do well with the surgery, or you might have a bad flare but you have to weigh the odds on what you can live with.....

I hope this helps you. Fibro is such an insidious disability. It's really a new battle every day, don't you think?

Good luck!
neen

I have just read through this forum with great interest and humility.
I'll try to keep this as short as possible. I've been a schoolbus driver since 1995. In May 2005 I pulled the door closed on the bus and felt something like a "twang" snap in my right shoulder. I treated it with heat over the weekend, thinking it was a pulled muscle, but it didn't help. By the following Tuesday I was at Urgent Care with pain shooting through my right arm, from shoulder to the tip of my index finger, which then went numb.
They started me on a roller coaster of treatment and finally the orthopedist, after months at a neurologist, declared very loudly "Can't they see you have a herniated disc!!!" I did-C6-C7 in my neck. I tried shots, PT, massage but nothing helped. So I was referred to a neurosurgeon and had an anterior microdisctecomy and fusion in June of '06.
I was great for about 3 or 4 months and then all my symptoms came back. After a CT scan, the doctors saw that a bone spur had grown at the fusion site. So I had that fixed this past July.
I've not gotten any better. PT's not helping, and a few weeks ago I was diagnosed with fibromyalgia. Since I never had it before, it's possible that my injury and the nerve damage caused it.
I've been on Cymbalta for the neuropathy, which hasn't done much for my hands but it makes me feel much better emotionally. The pain mgmt doctor also put me on Lyrica, which I take at bedtime and get a very good night's sleep.
I've been out on worker's comp since April of this year, so thank goodness I have the quilting business, since that doesn't hurt so much.
I also have carpal tunnel in my right hand. It's getting progressively worse and is affecting how I do things. Since I'm very left handed, I can do some things, but you don't know how much you depend on the other hand until you can't really use it. I've got an app't with the orthopedist on the 11th to see if I'm a good candidate for the surgery. I had the left hand done back in '03 and it's been great ever since. The rheumatologist who diagnosed the fibro recommends that I not have the surgery because fibro patients can take a lot longer to heal.
Have any of you that have fibro experienced this? If I do have surgery, it'll be after the holidays so I don't have to be out of business for too long.
I have to say that coming to the TQS site and "talking" to all my friends is a big help.
Anne, Jessamina, Ruth, Sharon, you are all very inspirational for me.
I thank you, and I apologize for being so long-winded .
Eileen Keane, NY

Sharon, Have you done any research on SeaBuckThorn, for fibro? If not, a place to start is: http://www.seabuckthorn.com/fibromyalgia.htm

I have used this several times, 2 months at a time, with a great deal of success. (although I wasn't cured, like the testimonial in the article.) I've just started my 3rd course, in about 3 years, because my fibro flared up this fall, after quite a traumatic summer for my body. If you are interested in trying this course of treatment, I get my supply from an online drugstore in Canada, for about $100.00 less than the above site charges. Let me know and I will supply that information for you.

This stuff is good for your whole body, BTW, for anyone else reading this. Please research it and find out if it would help what ails you.... No side effects!!!!!

Hope you are all better soon..

neen

Hi Ann, what great news that you've had three good months. We'll just pray for that three months to be extended - indefinitely.

I started a new drug for my fibro that was just approved this summer. I helps the pain, but I was in bed the first two weeks with my eyes rolled back in my head! I'm finally over that and it has helped tremendously. However, now I can't remember anything. I'm on three meds now that seem to 'cloud' memory, so sometimes I forget everything in the middle of a sentence. So, it's a tradeoff - mind or pain.

The neurosurgeon I was supposed to see after my MRI in Sept. didn't even call me to say he wouldn't see me. My nurse practitioner found a note he'd left on her computer. Needless to say, he's off my list of favorite people. My neurologist that I so admire and respect is sending me to another neurosurgeon in Jan., so we'll see what she says.

In Oct., I had a cortisone shot in my neck that did nothing.

I'm still considering Micro Spine Center in FL. Something keeps me from sending in my MRI results, etc., for the doctors there to evaluate. I've learned that those times I keep putting things off are God-things. He's having me wait for some reason. So I'm just waiting till He tells me what to do next.

Meanwhile, I can't sew. But that's okay. I think God has taken away my desire to sew to keep me from all the neck pain I'd have.


You all are still in my prayers. I hope everyone has a wonderful, pain-free Christmas season.

Sharon

as I was one of the "founding mothers" of this thread oh so long ago when it was in the "suggest a new topic" area of the forum. I really appreciate the updates that some of you have posted in the last few days and hope others will also let us know where they are in their passage through time as we struggle with our different issues.

after a rocky summer (five units of blood, six units of iron and two hospitallizations) I am on a high right now. Iron and ferritin levels have stayed up for almost three months. - a new record for me.

I was brave and went to Houston International Quilt Festival without my dh. Numerous old friends and new ones helped me through the struggles of maneuvering around a huge arena when stamina and walking long distances are a challenge. (Especially when you have a tendency to over estimate your strength and stamina and buy more things than you can comfortably handle.) Even a few strangers came to my rescue. To all of you who helped me - I thank you and pray each day that I will be able to repay my blessings by being a blessing to someone else along the way.

The holidays are here. My favorite time of year and I plan to enjoy every minute of them. Thanksgiving was special with special friends and a great dinner at our house and Christmas is rapidly approaching.

I personally would like to hear from any of you who want to give us all an update here or send them to me privately if you would rather not share publicly. Now during this time of the year I believe it is important to count our blessings and my many friends at TQS are definitely high on my blessing list.

also to some of you who have said this thread is just too sad, I hope you will try it again. We are here because we persevere and learn to adapt. And each new story touches someone in ways we will never know.

so BLESSINGS TO ALL OF YOU THIS HOLIDAY SEASON AND KNOW THAT MY THOUGHTS AND PRAYERS ARE WITH YOU ALL BUT ESPECIALLY YOU, JESSAMINA, AS YOU FACE YOUR SURGERY. (your surgery is scheduled for the day after my son''s 45th birthday so I will remember for sure. Hugs to you from me)

FROM ANN, temporarily and hopefully permanently healthy in southern TX

cutup wrote:
Hi there.... was just wandering around the forum and popped in here to see if there were any updates. Thanks for your inquiry into my situation. I am sorry you had to have surgery but... if it solves your problem then it will be all worth it.

I had my MRI in late October. It seems my situation has worsened and now there are two ruptured disks. I saw a specialist at Pennsylvania Hospital last week. I do have degenerative disk disease so, this is probably going to be an ongoing thing for me. I have two choices. I can do nothing, and keep putting up with the pain/living on pain meds. Or, I can have a Microdiscectomy that would remove the bulging disk material which is causing all my pain. This is considered a minimally invasive procedure. Very small incision, microscopic instruments, etc. That appealed to me. So, I have tentatively scheduled surgery for Jan. 23rd. If I decide to cancel I can do that. I wanted time to think, research this a bit, and also enjoy my holidays. But, I am leaning toward surgery since it sounds as if sooner or later I will end up there anyway. If I can decrease my pain by even just 50%.. or eliminate it years earlier than I would if I wait to have surgery later, I guess it makes sense to get it done now. I will make my final decision after the holidays. Thank you again for your concern.

cutup wrote:
Glad your surgery went well. Praying for you. ritzy

Hello
Its turkey day and so I thought I would drop a line. Surgery was Monday and everything went well still pretty sore but not as bad as the 2 shoulders they are horrible. I don't think I will be down too long and that's good news. Hope all of you had a great Thanksgiving and all are well....Jean in cold Wisconsin

Jessima,
was woundering what happened with the MRI and the Doc.
I just got the news yesterday I have to have surgery on my elbow Monday, my left hand is numb and its from a nerve in my elbow they have to move it under the muscle, I am so mad I have too much to do with the Holidays coming Xmas gifts to sew#@$$$@#$^$&^%&%6 you all know what I mean. OK I vented a little . Let us know Jessima whats been happening with you OK....Jean