Quilting with disabilities

[snowplow3840]

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

[eileenkny]

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 :roll: .
Eileen Keane, NY

[eileenkny]

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

[eileenkny]

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

[MamaBev]

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

[MamaBev]

gone

[snowplow3840]

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

[snowplow3840]

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

[snowplow3840]

gone

[snowplow3840]

Snowplow, I know what you mean with the sciatica. I have had real problems with mine ever since my first pregnancy, and it only got worse with the next two. I remember once when I was pregnant with my third child literally collapsing as I walked through a parking lot because a jolt caused my hip and knee to just give out. My doctor told me it would go away after the pregnancies, but it never completely did, although it is not as bad now as it was while 9 months pregnant. Now I can't stand for any long length of time due to shooting pains from way low in my back though my hip and across my knee. Driving long distance gives me problems too. My dh used to pick on me about it, saying I was being "wimpy" - at least till last week when his started acting up, lol. All the sudden it was "This is what you deal with!!! My God, how do you do it." What can I say - Men!! :roll:

[eileenkny]

About the magnesium-my rheumatologist took me off the regular magnesium and recommended Malic acid with magnesium. It's called Magnesium Malate and it yields 833mg of malic acid. He told me to take 2 before breakfast and 2 before dinner.

I called the pain mgmt doctor and she told me that she's never heard that fibro patients take longer to heal than anyone else. I am going to go for the consult next week, it's covered under the comp.

In doing a lot of research on the web about fibro, I looked for anything nutritional that would help. All the sites seem to recommend lowering carbs and upping the proteins. Has anyone here done this and has it helped?

Eileen Keane, NY

[eileenkny]

Good morning all, first, Ann, with the symptoms you've named, you very well could have fibro. It affects many systems in the body. The IBS is one. I have had that since at least 7th grade, maybe even before. The pain can be worse in different areas of the body in different people. I have a book that has detailed info on all the ways fibro can affect the body. If I find the book, I'll let you know the name.

I have taken a table called Fibro Response. It's malic acid, magnesium and maybe calcium. Can't remember all the things. That's another thing with fibro, the 'fibro fog'.

Mandy, I had really bad sciatic pain after my daughter was born. I couldn't stand with both feet on the floor. I had to stand with my left foot propped on my knee to get relief. I looked like a flamingo!! I went to a chiropractor who had recently had a baby. I thought maybe my pelvic was out of alignment because of the pregnancy, and a man wouldn't be looking for anything like that. The chiropractor had me pain free in just a few days.

Till next time, take care everybody, Sharon

[eileenkny]

Eileen, you said:

"In doing a lot of research on the web about fibro, I looked for anything nutritional that would help. All the sites seem to recommend lowering carbs and upping the proteins. Has anyone here done this and has it helped? "

Yes! The fact is that sugars weaken the immune system and protein builds/repairs muscle. It makes perfect sense but you should couple this theory with getting a good night sleep. Your muscles get micro-tears in them, from every activity you do, every day and when you sleep is when they heal. If you don't get enough good sleep, these micro-tears just keep adding up and are harder for you (and on you) to heal. (D-Ribose also facilitates the healing. As an aside, it also helped my IBS. We don't know why but whatever works, ya know!!??)

I can see why someone would tell you that fibro patients take longer to heal because you are already on a muscle healing regimen and trying like the dickens to get ahead of the damage you do to your muscles, innocently, every day, and then you have added "trauma" to the mix with the surgery. If you are in "a good place" with your healing regimen, the surgery might not add "too much" added pain to you. I hope that is the case with you. I know the pain you are in and none of us need more......

BTW, you might consider adding even more protein (whey protein is the best for you) after surgery to boost your healing process.... I boost mine with "Pure Protein" high protein bars (20g) (I get them from BJ's/Sam's/Wal-Marts, in a box of 15) and I supplement my breakfast or lunch with Slim-Fast high protein drink. (15g) I'm sure other people have learned ways that work for them, on this matter. I hope they post in here as any help is immeasurable, to us all...

Ann, I think Sharon is right, in that you do display many, many Fibro symptoms.... I wish you well.

neen

[eileenkny]

gone

[jbtaz36]

Kathy, I had the same food swallowing problem, food going down and stopping. I had an endoscopy done and they found that my esophagus had narrowed due to scar tissue being built up from acid reflux and a hiatal hernia . They widened the passage and put me on Nexium(the purple pill) for 3 months and on Prilosec for life. I have not had any problem since. ( Was asleep for the whole procedure)

I also am never going to complain again about my aches and pains of arthritis and growing old after reading all of the heartbreaking stories that you all are suffering through. My heart goes out to each one of you.