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Discussion Wall Archives, ending March 27, 2006

Becky 3/23/06
Hi all, I too had a sleep study done resently that led to other tests. A (BDG) Blood Gas test,
thats were a blood sample is taken from the artery in the left wrist, or at least thats were mine was taken from.
Anyway It hurt so bad I was screaming & sobbing so hard I just could`nt stop and I sobbed for
about 10 to 15 minuets after it was done!!OUCH!! My whole arm throbed for days! And a Complete pulmonary function test,
also a echocardigram. Then another breathing test but this one was at home. I was then put on Oxygen at nite only,
I guess my oxgen level dips low while I sleep. I`ve been on it for about 2 weeks and I do feel abit better.

Diana 3/23/06
Good morning! The term "newbie" did not hurt my feelings, I guess I just don't like being a novice. Plus I have a fear of rejection & I just wanted everyone to know me overnight & accept me- not that you guys don't, it's just my fear.
Richard- Funny you should mention "JOY!" Being a woman of faith, joy to me means- Jesus, Others, You! I struggle with this one because I repeatedly put others' needs before mine & get myself into trouble. I'm working on it. In a round about way, I help others cope with living with someone or even just being friends with someone that has FMS. I've found that a lot of the negetive feedback comes from those who just don't understand. So I have a desire to educate them, I guess that comes from my carrer field.
I have an appt. with my neurologist today. I'm trying to muster up the courage to be assertive about my condition. He does specialize in FMS but tends to clump people into categories. Well, guess what? I am different & so is everyone else, therefore requiring individualization of treatment! I tend to be on the mousey side & let people take advantage of me. My husband takes me to these appts. because you must drive on very busy highways at rush hour! He spends a lot of time driving on these types of roads & he is a bit more aggressive when it comes to driving habits. On top of that, he is a salesman ( I must use this term loosely because he is also a man of faith & does not take advantage of people) and he helps me to not be doormat! I've still been having trouble sleeping. I want to try more of the natural line but we have been without income for over a year now. My husband's next deal is liquid on the 30th & I will be able to "splurge." He sells commercial real estate which involves triple digit numbers so when he does "land a deal" we are set for a long time. This just snuck up on us being without income. During all the other "dry spells" I was able to pick up the slack. This was our first time of me not being able to do that. It's been a long & burdensome trial, as many of you know, but God is faithful & He even takes care of the birds! Enough babble, I need to try to catch up on some sleep & prepare myself mentally for tonight's appt.! So, Lots of luvs & little hugs to everyone!

Richard in Tucson March 23,06
Good Thursday Morning To all; I wish I had the time to post more, but I am off and running today.
I go to my Parent's Preschool to do my Maintenance chores for the week. I wish my dad could find someone to replace me, my body is getting real tired of doing this kind of work. I do light maintenance like changing four & eight foot light bulbs, putting up holliday decorations, painting, usually touch-up work, picking up trash around the building, you wouldn't believe the ammount of cigarett butts I pick-up I use a long pick-up device to help me with this, but it is still dicusting. You never know what I will find broken when I get there. Some times the stress is just too much. If it wasn't the fact that we need the money I would have stopped a long time ago.
I wish I had the time to contribute something more positive, it will have to wait until tomrrow. Talk to you soon,Gentle Huggs from Richard in Tucson...

Cindy 3/23/06
Cindy 3/23 I have been skimming the posts on the Wall. I have had fibromyalgia for 30 years now. Just found this by accident ( or is it fated?) I'm now unable to work since I don't know what kind of day I'm gonna have. I take Aleria and opiates for the pain and handle the depression with meds. Sometimes I dispair so. I don't have anyone I can talk to who knows this disease. I look healthy, so I get the "looks". My rheumatologist seems to be the only one who understands the pain and helpless feelings. My doctor sent me to a pain clinic. What else can I do? Sorry if this is a downer, but maybe someone can tell me what I need to hear. Thanks for listening.

Jaime 3-23-06
Hi all, been a bit since I last posted.

Becky, it's is very common to be in severe pain with the ABG (Arterial Blood Gas). Most people that have it done writhe in agony. It's just due to the super sensitive nerves around the arteries. If the pain doesn't go away soon I'd get it checked again just to be sure that you're okay.

Been having terrible nightmares lately, and also found out the hard way that I'm allergic to peanut butter, or the peanut oils. Last week I had to go to the ER, after eating some immitation crabmeat at a chinese place. We weren't sure until last night when after I had some peanut butter and I started blowing up with hives and such. Almost had to go to the ER, thankfully the Benadryl finally kicked in.

Anyway, I've missed you all. Hope you all are feeling alright. Take care.

Alexandra Marie--2/23/06
3/23/06 I thought I'd post the things that I've found that have helped me that didn't involve a prescription, but were lifestyle changes. They don't replace medication for me, but it makes it easier to use minimal doses of medication.

Things that helped me:
--Doing the things they tell you about using your bed only for sleep and you-know-what. It really does help to have myself conditioned that what I do in the bed is sleep. (I still sleep badly, but I do go right off to sleep.)
--Hot baths. Often I use epsom salts that have been scented with essential oils for some nice cheap home aromatherapy. I also use bath oils the same way, AND it helps with the dry skin.
--Watching what I eat, and eating what works FOR ME. I don't care about anyone else's diets, theories, et cetera. If I feel clearheaded and strong and don't have my gut in knots, it's a good thing for me to eat. I have accepted I have to eat my three meals a day, no skipping, no "eat later", or I'll regret it, and I just work around that the way you work around a baby's nap schedule.
--Putting downtime in between my movement times. We all know that if you can work without pain for ten minutes and with pain for thirty and work to thirty, you're going to be miserable when you sit down. I do everything in sections. Move chair, sweep and mop floor under chair...oh, look, can't do anything til floor dries! (grin) And I always tell myself that whatever happens, I have to replace the "section" I did, and I never make the "section" so large that I can't put it back even if the exhaustion hits. So I may not get the room cleaned in a day, but over a few weeks everything DOES get moved and cleaned, and that makes me feel better, and when I feel better I don't hurt as much. --Find laughter, joy, and humor wherever you can, and have at least one good belly laugh a day. I adore my cats for this, and part of the reason I married my husband is that he can always make me smile. Laughter does good things for your pain perception and tolerance.
--I found that learning to meditate put me in touch with myself so that I could find out what was going on with me and percieve it without putting a value judgement on it. This helps identify sensations. Am I up pacing because I'm having a bout of restless legs, because I'm bored, because I'm hungry, or because I'm hurting? Can't apply a remedy til you know what's wrong, after all. And I think having a strong religious life does help. My religion isn't a majority one, but I derive great comfort from doing the seasonal observances and from the worship community locally, who know that I have problems and are good to help me with them.
--And, finally, that "you-know-what" I mentioned earlier? It's amazing how very good those endorphins are for general pain control over a couple of days time AFTERWARDS. And puts both me and my husband in a good mood. He's learned that putting lotion on me and doing a very light massage is something that helps me get into the right head space for "that".Your mileage may vary, but it certainly works for me.(wink)

And finally, a story that may reassure some of us.
I was the second-youngest of the grandchildren. By the time I was old enough to remember, my very active grandfather, who had hiked and run beside bikes and played baseball and camped all over the country, had had his first hip replacement and had had to pretty much (early '70s) adopt a sedentary life. When he died, one of my older cousins said to me, "You know, Alexandra, I always felt bad for you and Christina (younger sister), you never got to go on hikes with Grandpa or go camping with him...you missed out on all that fun."
"Oh, no," I said. "I had just the grandpa I wanted. Everyone else was busy doing and being and all. He was the only one who would sit down and let me tell him stories and read him books and talk to me about history and science and people and EVERYTHING. He was always there to talk to me. I felt sorry for you, cause you were grown up and doing your own thing before he sat down and talked."
People love you for who you are. Not what you can do, or can't do. It's important to love yourself the same way.

Renee
I have not been officially diagnosed yet, I have almost every symptom of Fibro. Most of my pain is in my upper body. My shoulders, arms, hands, chest and neck. It also seems like when I am in a major flare-up any kind of stress makes everything hurt worse. This last flare-up started I know because my family moved and there was a weather change. Also, lately I have been getting dizzy alot and I was wondering is that could have something to do with my new office has florecient (?) lights? I am very sensitive to bright lights, so could my new work enviroment be affecting me? As soon as I get health insurance I am going to see if I can find a DR that knows something about Fibromyalgia. Does anyone have any advice on finding a DR? I really don't like the thought of taking medicine all the time, but I can't go any longer with this pain. I would love any advice someone might have. Renee from AZ

Doris 3/24/06
Hello everybody. Well we have survived another week......of course it did have alot of ups and downs for me. Yesterday was a BAD day for me. I got a headache around lunch and my whole body felt funny so I took a percocet and went to bed and didn't get up til 4:30! I am due for another spinal tap cause I know I have fluid buidup again and that's why the headaches are beginning. I can't do alot of bending over cause that will also bring the headaches on. I have an appt. to see my neurologist April 20 but I may have to see if I can get in sooner if I get any worse. My disability hearing is April 18 and I MUST be able to go to that!

I agree on doing things in sections so to speak. That is how I have to clean my house also. I do a little each day. It works fine and I don't get so overtired. My house is quite easy to keep clean. There is nobody here but me,my b/f, and our little dog Kimo. It really stays pretty clean in here most of the time. Our dog is well trained and so he is no problem. So I try to keep things as clean as I can on my good days cause I never know when a bad day will flare. I have a bad back and it's always worse in the mornings and sometimes at night. It's the degenerative disease thing my dr. told me I had. Seems to be getting worse at times but I try to keep going. Very painful when it's at it's worse. Usually if I get up and move as much as I can,it will tend to ease up. So that is what I do. Well I am gonna get outta here for now but I hope you all have a great weekend and do something fun and spend time with someone you love! Gentle hugs to all and God bless and keep you all safe and I hope your pain is little and your laughter is lots!

Claudia Rosser March 24, 2006

Claudia Rosser March 24, 2006
I am new to the group. I have been battling with FM for over 8 years. It has been a tough. Each year it seems to be getting harder. I am not able to work anymore due to FM and bulging disc. I wonder from time to time if my back was hurt due to the FM. I have applied for disability. I am waiting to go in front of judge. I am 46 years old live in NC. I have not had much support here at home with husband and his family. I have no family other than my daughter. It is a lonely time. This is a little of myself Claudia

Sue H, NY, March 24
Alexandra- thanks for the story about your grandfather. I loved it.

Claudia- I hope the Wall will help you feel less lonely, a lot of people here who can relate to what you are going through and how you feel.

Renee- finding a doctor is hard work. I find I do all the research myself, and just use the doctors to get what I need. I was referred to a rhematologist for the joint pain, he is the one who dx me. But all he was doing was giving me one medication after the other and none of it worked and I hated the side effects and the meds actually made me feel worse. But I went through the process and tried things. Then I went to my regular doctor and told him I wanted a sleep study, since I was falling asleep driving and constantly taking naps, etc. So now I have been going through that process, sleep studies, trying the dental appliance, getting adjustments with it and getting used to it, etc. That is actually helping me with my fatigue.

My advise about doctors is do a lot of research, go in prepared, write down your questions and concerns so you don't forget what you want to bring up and bring someone in with you if you can, two pairs of eyes and ears are better than one pair.

Regarding dealing with doctors, there is a book I heard about that sounded excellent that you may want to look into and it was only $10 on amazon. It's called "You, The Smart Patient: An Insiders Handbook for Getting the Best Treatment". by Michael F. Roizen. It's all about how to work with docotrs to get answers to your questions and to get quality treatment. Written by a doctor, I heard a story about it on the radio and the reviews on amazon were great.

gotta go for now, I'll post later, Sue H

crystillin
hey hows it going me great i just want to ask what is fm? i here what your saying but i never heard of it before i am confused please tell me thanks......

Richard in Tucson March 24, 06
Good Friday to all here;
Alexandra Marie: Welcome & Thank you for all your Thing that helped you, I too lvoe your story about your very active grandfather, he sounded like a wonderful man to me, I am inspired to be like him to my children an grandchildren. Thank you for reminding me of the fact that I am who I am not, what I can't do anymore.
Renee: Welcome to the wall, you have come to the right place for your Answers. What part of Arizona do you live?

I wish I could be of more help with all the need here, I have a ton of work to get done today & it's already 10:00am. I wish you all well and hope and pray you find comfort. Have a wonderful day and weekend. From Richard in Tucson...

Jaime 3-24
Hi Fmily, I was wondering if any of you who also have arthritis take methotrexate. My rheumy put me on the methotrexate for psoriatic arthritis of my low back. The possible side effects of bone marrow problems have really been scaring me. My therapist has also put me on Depakote just until the PTSD is more calmed down. So that is two drugs that could mess up my bone marrow. Both my husband and I have heard of the bone marrow being more of a problem with the methotrexate. I've been on it for a month, but I'm really getting worried with taking it. Have any of you had any problems with this medication?

This week has been rough with the food allergy problems, nightmares and pain. Feeling a pressure front coming through and also having migraines.

Guess I better get off of here, have an appointment at 1pm to get my business put into the phone book. Stay warm, and try to be pain free. I know, yeah right! :)

casey in IL Mar. 25
jamie, i have found when i am in doubt about meds that the best one to ask for information about problems (especially the kind you are worried about) is the pharmacist where you buy your medications. i have found them to be very helpful with information and offering to find out more if they don't know right away. especially in this day of receiving scrips from more than one doctor, the pharmacist can be your best friend. i hope this helps in some way. warm and gentle fibro hugs casey in IL

Jann Berger
Jann March 25--I have been without a computor for a time, and also had a blessed time of no fibro for months in 2005, so I have not been checking the Wall. Christmas night, the fibro pain came back, and both my husband and I have been sick for a month with what is called the "croupy crud," in our area. We are slowly getting better. Anyway, I have had lots of time to read because of the illness. I reread Dr. John Sarno's book on back pain, then ordered his newest book on the mindbody connection, and also Dr. Nancy Selfridges book on fibro. She used Dr. Sarno's theory that muscle pain illnesses, and other illnesses, are caused by repressed negative emotions. Dr. Selfridge and her co-writer cured themselves by using Dr.Sarno's theory. Has anyone tried this? i had been sleeping in a recloner since Christmas night because my back wanted to spasm in bed. I have now slept two nights in bed,but did use one or 1/2 Flexiril. I also had a bad attack of IBS, and it was gone in one day insstead of the usual six. I realize this just might be a fluke, but wonder if anyone else has tried this. Has anyone had success with the guaifenesin protocol? Thanks.

Jeff 3/25/2006
I'm excited to see that Dr. Sarno's book, THE MINDBODY PRESCRIPTION, is being discussed--it is how i became cured. I suffered from fibromyalgia for 4-5 years, beginning following a car wreck which totaled the car i was in. the pain and limitation began on my right side--arm, then neck and shoulder. As years passed, my whole body seemed affected, and it was strange, as i was used to being very athletic. the worst point of my living with fibromyalgia was when i couldn't paint (physically use a paintbrush) without severe pain. i was limited to walking (with the help of orthotics) and swimming for exercise. i had seen many doctors and specialists. some questioned what i had, one gave me a life-long limitation prognosis, others tried to help through vitamins, physical therapy, yoga, emc (alpha-stim unit), prescription medicine, diet and magnets (nikken). after 4-5 years of living with fibromyalgia, i was watching the tv show 20/20 one evening and saw a story on Dr. John E. Sarno. The television journalist, John Stossel was reporting. Mr. Stossel himself had been cured with the help of Dr. Sarno. Mr. Stossel had suffered from disabling back pain for years. I most vividly remember a middle-aged lady featured in the story who was confined to a motorized wheelchair for mobility. The same lady was shown RUNNING (!) by the end of the story. This was unbelivable to see. I suffered, so i thought, but i was not confined to a wheelchair. This lady was and now she was running. so i was definitely interested. but i had been excited before about possible cures, with magnets, vitamins, and diets. so i wasn't necessarily too excited. i was given the book the very next day, and i read the book in two days. on the second day, i went jogging for the first time in years! i'll admit the entire process of being cured took at least 4-5 months, but my life of disability and pain was slowly ending the day i started reading the book. many thanks to the person/persons responsible for this website--you are providing a service of hope, faith, and love here, and i applaud your dedication.

Bernadette March 25
Hi friends. I haven't posted in a while so to some of you, I'll be a newbie! I decided to take a break from the Wall for awhile and I don't think I'll ever be such a big time poster like I was for awhile there because I have been really busy trying a lot of things. I do enjoy reading still though. JEFF and JAN I have tried the Nancy Selfridge 5 week program and did find some relief but not a lot. I do think that there is a definite mind/body link though, as is shown to me by the fact that when I am stressed or upset and not taking care of myself, it gets worse.

ALEXANDRA MARIE thank you for your wonderful post about what does work for you. I try to stay in the solution and it is fun to see what works for others. COncerning your comments about diet-I find that I am in less pain, get less headaches and tiredness etc. if I stick to a gluten free diet. The downtime in between movement is also wonderfully effective for me too (as is the intimacy with hubby). That and yoga and massage. I have been taking ultram for years with some help, but have recently also been taking Neurontin with good results. I wonder if anyone has anything to share about this drug?

JAnn Berger
Hello. It was encouraging to hear that one of you was cured with Dr.Sarno's method. Even though it did not work well for another one of you, I am going to start Dr. Selfridge's method. I do believe that I was much better after I solved the insomnia with light therapy. I have been doing that for over a year, and I only have sleep problems on one or two nights right before the full moon. Before that, I was not sleeping until 3:00 or 4:00, and had to use Ambien. I no longer take meds for sleep. My current problems began Christmas night, even though we had had a fine Christmas. Our only son never did tell us whether or not he was coming for Christmas (he didn't), and I suppose the constant checking of email while entertaining was more stressful than I realized. Son's problems are the source of my problems.

Sue March 25, 2006
I just stumbled onto the Wall. I was seaching for some help with my conditions.
FMS and osterarthritis.

When I have a praticularly bad day, I try very hard not to climb into a hole and withdraw so, I went searching instead, and found this!!

My apologies to Judy and Sherri and the messed up e-mails. < > The Wall seems to be a great place to learn and scream and cry and laugh and help and listen.
An awful thing to say but there's comfort in numbers.
Sorry if I messed the posting up, I've never done this before.

Rose 25 March '06
Glad to hear that someone is talking "cure". That is encouraging. Good luck to those who are still searching for the right doctor. I no longer see the rheumatologist who diagnosed me 7 yrs ago. His advice was to get my butt out there and walk and excercise.He also cautioned me against "support groups" because of all the "negative attitudes". That was his solution. At the time, not knowing what FM was, and I was so grateful it wasn't RA or worse, I decided it was a blessing. 3 months later I was back in my PCP's office wondering why I wasn't feeling better. She said her patients with FM usually are more disabled than the RA patients. She also told me she didn't know why. She said I was taking the meds that help so don't stop taking them, because there was nothing more that would help. If I can exercise, then keep moving until I can't. Whew! Made me angry and I became defiant and went looking for employment. I was able to fake it enough to get through the interviews and my past credentials were great. But the first day of training had my head spinning and I collapsed when I got home. I knew I would never be able to pull it off. So I told them thanks but no thanks. Since then, I have been taking it a day at a time, doing what I can and resting when I need to. Instead of having a thriving private practice, I now tend to pets in our home. The large dogs have contributed to a knee injury that was recently operated on. So now I am using a cane outside the home. I have a great neurologist who acknowleges this disease and its limitations on the bad days. He has guided me with meds and helped me create a menu of choices of movement. On the worst of days, more meds and the jacuzzi. What I miss most, though, is my mind. It is so slow and I am reluctant to socialize much these days due to memory problems. I have also become visually impaired beyond correction in one eye. That, and balance problems, are being monitored for MS. Don't know which is more debilitating in the short term. But it is clear that MS is lethal if there is no remission. I would love to see FM remission....other than being sound asleep!When it occurs. I would like to know of anyone's experience with cure or remission from FM, other than having a few days without much pain or fatigue. Thanks for listening.

Rose 25 March 06
Bernadette, I am taking Neurontin daily and it is a godsend in terms of pain management and restorative sleep. My neurologist wants me to take the 100mg dose during the day instead of the Tylenol I used to live on. I take the 300mg capsules (2-3) at bedtime. The antidepressants are taken at night too.(nortryptaline and Zoloft). That usually lets me sleep for 6 hrs. On really painful days I have a narcotic, which I hate to take. For some reason, it makes it hard to stay asleep and obviously, makes me worthless during the day. Hope the Neurontin is a benefit for you! Rose

Crishanna/AZ/3/26
Hello my name is Crishanna. Last night I spent about 3 hours reading the wall. I felt that I could relate with most of you. You all seem like really nice people. I am almost 26 years old. I was only just diagnosed last September, though I have been suffering in some form for quite sometime. I am newly married since last April (five months before my diagnosis.This has been very difficult for my husband to come to terms with as well as me. I was a licensed pharmacy for 6 years and thankfully was working for a company that could provide me with disability. I have tried Neurontin, Lyrica, Cymbalta, Vicodin, Oxycontin, Relafen, Soma, Skelaxin, Topamax, Mucinex, Guaifenesin, just to name a few. I am willing to discuss this further in detail howeverI don't want to take up this whole wall. I admire the courage of all of you. I hope you all are well today. I prayed for all of you last night. You can e-mail me directly, however I am in the process of changing e-mail addresses. Thanks for listening. Take care. Crishanna, Arizona.

Suz March 26, 2006
Hi again
Like Crishanna, I spent hours reading the wall. I will admit, my FMS is not nearly as bad as moston here. I have other problems, the osterarthritis, collapsed dics, pressing on the root nerve. Its difficult to distinguish which is causing the pain and numbness in my legs. I take very little medication because, of the many I've tried, they all seem to have weird side effects with me. On my worst days, I resort to a darvacet but otherwise I stick with the celebrex (tried cutting to 1 a day, not working well), ultram and elavil.

I do exercise--step arobics without the step, twice a week and walk my dogs whenever the weather permits. On bad days, I can't force myself to do it. Then if I miss arobics, I start going into a slump. A vicious circle. Don't want to move cause it hurts, it hurts not to move, going into a depression over it .. can't move. I have a good friend that has studied FMS for her certification as an arobics instructor. She sees when I'm going into the slump and she works with me to get out of it.

Anyway, what I really wanted to say is, I think I would be alot worse off if I hadn't found out about Reiki. Sherri asked me and I'll send her an email on it, but I wanted to share with others too.

Reiki is an alternate treatment where healing energy is channeled from a practioner to patient to enhance energy and reduce stress, pain and fatigue. Anyone can learn how to do it and many learn to do it just to help themselves and/or family members.

Thats it for now, please contact me if you'd like more info. but I've sat to long for now, I need to move before I can't! lol

I saw there is another Sue from NY so I'll change my name to Suz!


Rose 26 March '06
Rose here...I have a question...Can a person have FM and MS at the same time? I am beginning to connect the dots, so to speak. I was just reading about optic neuritis, a recent diagnosis from my neurologist. I guess it just struck me that it is another condition that is caused by MS. Having a dark day today. Aside from the strain of my eyesight, I am exhausted and achy. Of course, depression has been nipping at my heels all day. Actually it's more like a weight on my shoulders. I get up and try to do a task and need to sit down again. Trying to do my exercises and can't stand the pain. I had two busy days and today I am unable to endure. Wish I had a body that would cooperate.

Coco
Hi everyone. I have been reading a lot of the postings, and have observed the kindness that you all display to eachother. Thank you for your guidance. Recently, I went to a rheumatologist for the first time. My internist diagnosed me with FM, but it was the specialist that decided to start me on Lyrica, because of my neuropathic symptoms. This drug has made all the difference for me, so far, in suppressing my symptoms. I have been on it for a week. I am hoping this will continue to help... My best wishes to all of you.

Cindy
Hi FMers. Cindy here. Just a bit to say. I am bipolar, and have restless legs, diabetes, and that's about it. I have had the good fortune to have a great PCP until she moved. Now I am working with a PCP who is not all with it. Since I am moving at the end of the year, I'm gonna stick with her as long as she lets me continue with my specialists. I take Alyeria now for diabetic neuropathy. With it, it has the side effect of helping with the Fibromyalgia pain. I found out how much it helped when I ran out of it. I also take an opiate for the pain. Clonazapam helps me sleep. I know there are a lot of you who try not to take meds, but without them, I am immobile. I excercise 5 times a week with Curves, walk my dog about 6x a day, and when it's not under repair, I go into the hot tub (therapy spa, according to the management here) for 30 minutes. I also have to take it slow and easy all the time. When I have to take a bus to a Dr., the rest of the day is shot cause of the fatigue and the pain. Well thanks for letting me vent. Cindy from PHX AZ

Suz March 26, 2006
Keep your chin up Rose. What you don't get done today, will be there tomorrow or the next day. We often do to much on our good days and suffer for it. I guess the trick is to learn to pace yourself. That doesn't always work for some when they are in the working world but, I find it works for me. Do a little,rest a little, do a little more. I've found, like you, on the days I can't get moving, the depression starts setting in. I'm trying to make a point of, when I feel it coming or when I feel extremly tired in the afternoon, I take a walk, if weather permits or just do something different to get my mind off my problems. Most of the time it works. Other times I guess even the depression may have to run its course. I've also had problems with infection in my eye, twice now in 2 months. Steroids for the eye..I'm losing my hair from it. At least I think thats what its from. I could sit here and wonder how much hair I'll have left after the eye is better and after the steroid injections in my back in April. Or I could consider buying a wig...donations accetped...lol

Alexandra Marie 3/26/06
Alexandra Marie, 3/26/06 This weekend was pretty hard. I was supposed to see the boys, but I started my period Friday night. I thought that maybe I'd do better this time because I've been feeling so much better, but I got the chicken noodles made Saturday morning (and my husband said they were as good as his grandma's so I felt very proud!) and sat down and WHAM. Cramps up to my shoulderblades and down to my knees, although the sick dizziness held off. I felt better when I woke up, but I got in the car and we no sooner got turned onto the main street and I knew, no. Can't stand to ride in the car to church, it makes the cramps worse. That made me so angry. I'm leader of a group there, and I knew they'd be expecting to see me. But I also knew that if it hurt that much then, it wouldn't get any better. I wound up going back to bed and resting for most of the day, and just basically getting up, eating a little something, and going back to bed. This is the first time for a long time it's been so bad I couldn't surf the Net. But I got through the painful part without taking anything, and that is good, since I don't have a huge supply of prescription pain pills. I should be okay just taking my usual pain pills. That is, assuming I don't lift anything. (wry grin) I'm glad the story about my grandpa was a blessing...I just felt I needed to tell it here.

Crishanna/AZ/3/26
Hello, I am back again. I hope you are all doing well today. Rose: I can tell you are really struggling and I just wanted to tell you to hang in there. I also wanted to let you know that it is possable to have both MS and FM. My best friend is 24 and also has both. I think that if you have fibromyalgia it is very possable to be triggered by MS but not vise versa. It is my understanding through research that FM is something you are born with but you will stay asymptomatic (without symptoms) untill something triggers it. I think that is quite an obstacle you have there. I know my best friend suffers emensley. Jan: I just wanted to let you know that I have tried mucinex and also compounded guaifenesin in it's original form. It is my belief that it is the magnesium in the Mucinex that helps with the FM. So I have been magnesium it it's regular form and have noticed a small difference. My rheumatologist says that it is only the one Dr. in California who is a strong believer in the Guaifenisin Protocol. However I do know one lady who swears by it. I think that the only way to find out what works for you is to try it. Unfortunatley, like me you may begin to feel like a ginni pig for a while. I have tried many medications and have gone through many side effects. Because there is only medication for the various symptoms of FM and not for the FM directly alls we can do is keep trying and pray we find what works the best for us. Bernadette: I say the same to you. I have tried Neurontin up to 1800 mg and had no relief. However my best friend and others swear by it. I do believe everyone should try massage. I got a 1 hour massage and because it was the first time I recieved relief in quite sometime I cryed tears of joy. I was in a lot of pain the next day from all the toxins in my body, however I think if I try to get massages consistantly it could be pretty benificial. Well thanks for listening everyone. I'm so eager to hear from all of you on how you are doing. Crishanna, Scottsdale/AZ

louise ontario, march 27

Good Tuesday morning to everyone! It has been a while since I posted, but I read the wall frequently.

About four years ago, I went to have my hands and wrists checked because one finger would not quite straighten out and I lost the feeling altogether in another finger. At that time, I was told that I had "dramatic, bilateral carpal tunnel and neuropathy". Since I have had other health problems that were more critical, my doctor and I tucked the information away and dealt with the immediate issues. Well, things have calmed down, so I went back to have the hands and wrists checked again. Has anyone here had those tests? The technician inserts a needle into the nerves in various places on my hands and wrists. OMG! Talk about pain. Anyway, to no one's surprise, the carpal tunnel and neuropathy have continued to get worse. I had no idea that there is medication available for neuropathy. Thank you so much for the information Coco and Cindy -- I feel hopeful! Even though I have promised myself that I would not add any new medication to the ones I am already taking (insulin for diabetes; Crestor for cholesterol; a diuretic; Effexor for my depression; Neurontin, OxyContin, and Tylenol threes and fours for fibro and arthritic pain; as well as a variety of supplements and vitamins that Karen puts together for me) I will cheerfully take another medication, if it will help with the neuropathy.

One of the great things about this site is that wallabies have tons of information and are willing to share their experiences. So I have a question. About the carpal tunnel... has anyone dealt with this? How is it handled? Medication? Physiotherapy? Chiropractic? Surgery? I really hope it's not surgery, since I've had enough surgery in the last six years to last me a lifetime.

I really look forward to hearing about people's experiences. This has turned into a tome, so I will sign off for now. Hugs...

Richard in Tucson March 27, 06
Good Monday Morning to Everyone Here;
Warm Welcome to all of you New wonderful people to the Wall. I don't have much time to post today, but I want you all to know that I am here for you all. I hope to have more time to post later in the week if not tomorrow. I am working on my new deck today & am getting help from a wonderful friend. My main problem has been lack of motivation, due to debilitating fatigue, I feel my friends motivation with help me to get something done.
I send warm well wishes to you all with Gentle Hugs and Hopes from Richard in Tucson...

Vonnie
03-27-03 Vonnie I have just be told I have Fibromyalgia. I have been from Dr. to Dr. trying to figure out whats wrong with me. It has been a several long years and has taken all my savings to do it. I can say though I am just happy to finally know what is wrong with me and now I just have to start trying to feel better. This all started with me when I kept waking up with pain down by arm and into my fingers. Next it was both arms and then legs. Then it just seemed to take over my life and now I want it back. I am currently on Ambein at night and it helps me some. At least I sleep alittle longer. I just went to a sleep disorder clinic and am waiting for that results. My feet and legs hurt so bad. I go to the local ymca and swim which makes me feel great as long as I'm in the water but after I get out and go on the pain returns. I just don't know what else to do. I read where people say to walk but it hurts my feet and calves of my legs so badly I can't stand it for very long. Anyone have any suggestions? This is so new to me I don't really know where to begin. I just have hope and Faith in my God that this will all work out for the good.

Suz March 27, 2006
Good Monday morning to all! Its gorgeous in NY today. Beautiful, sunny but a bit cool day. It beats 20 below any day. 40's today..Ohhh Yeah! I got up very early this morning and thought, omg! nothing hurts..why? Well, don't kick a gift horse in the mouth, the last 2 days have been rather painful. The nice day most likely has alot to do with it. The winters here can be hard and long but this year it was mild. Thank god! The price of heating the place could bankrupt us. I know I'll over do it today..I always have more energy on a nice day. I just hope I have sense enough to take frequent breaks! Hope all you fibbies have a decent day!! Good luck with the deck Richard. By the end of the week I should be able to go out and sit on mine, if I can find a place to sit. Seems it always gets filled up with *stuff* over the winter.

Jann Berger
CARPAL TUNNEL In response to a query, I had carpal tunnel surgery done on each hand, 10 days apart, three or four years ago. During one surgery, a trigger thumb was also repaired. I didn't think it was a big deal. We live near a chicken/egg factory and the flies are terrible during April and May, and I was swatting flies and killing them, within a couple of hours of the surgery---even with the hand in a cast!!!! However, I now wonder, since I am reading Dr. Sarno and Dr. Selfridge, if that surgery was necessary. Maybe I could have couquered it with their methods? There are newer surgery methods, also, since mine was done, where just a small incision is now made. It is being done in our rural state, so it is not something that can only be done in the big, metropolitan hospitals. I will repeat that light therapy cured my insomnia. Jann March 27

Doris 3/27/06
Hello friends. Wow so many new people on here! Welcome to you all! I haven't posted in a few days. I just haven't really felt up to it or even been in the mood I guess. Glad to see that you are doing ok Richard. Wondering where all our regulars are????? I sure hope Bonnie is doing better and can come back soon. I saw that someone took Lyrica and I also take it twice a day for my restless legs and fibro. It does help some. I have been on it for awhile now. Gee I take 12 pills a day now, every single day! Well I am tired so everybody take care and God bless.

Bernadette March 27
Vonnie it seems like we hurt if we do too much and if we do too little. The key seems to be a little exercise, built up slowly, with lots of stretches and rest in between. Don't think about how much you used to exercise, or how much a normal person would exercise. Just start with five minutes a day if you need to. If you hurt too much the next day, then cut down. We usually have a delayed reaction to exercise, so that while we are doing it, we feel fine, but hours later it starts to hurt. That is why we have to take it easy and judge how much to do next time by how much it hurts later. But like I said, I find some of my worst flares are caused by me not exercising at all, so a little bit is perfect. Start slow!! My calves are often really sore, and a good exercise for them is to find some stairs, put the front half of my foot on the edge of a step, and lower the back part of my foot down towards the next lower step. Hope I explained that alright. Doris and Richard, it is good to see you guys. I'm sad the old group seems to have broken up, but I guess that is just the way it is.

Hilda 3/27/06
Hilda-3/27/06. Guess I’m a newby here. I’ve read several of your postings and find that we all have one thing in common besides the pain and suffering of FM. Frustration, Frustration, Frustration. I, too, feel the same. If my body isn’t aching, my psyche is. I was diagnosed in about 1990. I really feel this was brought on by a horrendous job. I’m a legal assistant/paralegal and at the time I was working for a horrible man who verbally abused me and stressed me to the max. Long story short, that’s about the time I was finally diagnosed. I have a question for Suz. What’s “Reiki” and how do you do it? Also, if I want to speak with someone directly, how do I find their email address. I don’t usually go into detail about some aspects of my life, but I would like to hear the things people have done that have positively effected their FMS. I will say one thing right now and that’s that I am currently unemployed. More on that later. I have been unable to find a job either in or out of my field, preferable out. I am 100% stressed to the max about that since I am getting close to the old retirement age of 62 and will be there in less than 5 years. I would like to know what medications people have taken that work for them. I take a couple, one of which is hydrocodone. It helps for about 3 hours. I also take sleeping pills and anti-depressants. Oh, yes. For the lady, I can’t remember her name, who was trying to get disability, try checking yourself into a mental hospital. I did that about 13 years ago after working for that piece of work lawyer. It helps with the disability people if you can prove your depression with this disease. Like an idiot, I found another job after about 8 years and decided not to stay on disability. Now, five years later, I wish I had never stopped. Also, are we allowed to know where each other lives?

Judy Monday, March 27, 2006
Hi everyone. I read your post with interest, Louise. I, too, was diagnosed with Carpel Tunnel, not only in both wrists but both elbows, and my neck! They did the testing with the electrodes this time but years ago before my first Carpel Tunnel dxs the dr. used needles that he inserted all up and down my arms all the way down to my fingers at regularly spaced intervals. Back then I had one hand operated on and had alot of pain and was unable to use it for quite a while. No cast back then whatsoever. This time my dr. sent me to a PT and actually, the therapy did help. They'd determined I had severe nerve damage to my left hand and mild damage to my right. My hands and arms woke me up frequently with so much pain I couldn't stay in bed before therapy. I'd get up with tears running down my cheeks, sit in my recliner and try to find a way to hold my hands/arms in a way I could stand it. So that's what drove me to the dr. to begin with, and she chose therapy to see if it would help and after a while it did in fact. My 92 yr. old mother just had CT surgery on her right hand last Fall. She had a very tiny incision, about an inch maybe?...and she was fine within about a week. She's diabetic too, so that was fast healing for her. I'm sure she wasn't up to swatting flies but she was OK.
Good luck, Louise. I hope you find relief too.
And Richard, I only wish it was warm enough here in Illinois to enjoy a deck! It's 39 tonight here in Pekin, and yet it's Spring! Go figure! Also, Richard, I want to take a moment to thank you for always being so kind to all of us and being so encouraging. You're a champ!
To everyone else, I pray you'll all be pain free and be able to enjoy life. God bless you all, and hugs, too! Judy

blueyes march 27
blueyes march 27 jan berger, can you tell me more about the light therapy? I would love to get off of ambien and get a restful night of sleep!