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Posted 2/17/2009 10:48 PM (GMT 0)
In one of the replies to jewelry lady's post: coming to terms with an illness, some things were said that made me feel really sad and discouraged (there was good information, too and some things I reacted to with anxiety).

I don't want to post this because I don't want to upset anyone.  But at the same time, maybe we should talk about it:  The post was from Sherrine and   said (my paraphrase to keep it short)  that that you refused to slow down because then slow would be your regular pace; aim high and you will be surprised at how your body will respond and that you didn't give in to the idea that you might need help walking because that idea is a self-fulfilling prophesy. 

There are days when I absolutely must slow down.  I cannot, even if I try, do things at my "normal" speed.  But I do them and am ok with having to slow down.  I do them with a happy attitude (most of the time).  But I refuse to tell myself that I am letting fibro run my life or that just because I slow down, I will soon become incapacitated.  There are days when I aim high and pay for it in a flare the next day.  I absolutely must pace myself.   Yes, I agree, make realistic goals, but some people cannot make it on positive attitude alone - the body rebels.   I have been fighting hard against the need for a walking aid.  It is because I am proud, because I think my difficulties are not as bad as others' difficulties, because I am ashamed for not being able to do what I used to do,  and a whole lot of other reasons that I cannot even understand yet.  We want to go to Disneyland and I know from experience that I cannot do it.  My husband said we can rent me a chair so when the day gets hard I can sit on the chair and still get around.  I have a cane and sometimes use it, even though it upsets me to do so.  It has taken me a long time to finally accept that sometimes I need assistance (and still I fight it).  When I read your response to Austen it upset me a lot.  I am glad you can walk fine, but not everyone can.  And those who can't are not self fulfilling a prophesy.  When I have trouble walking and I persist, it gets worse. 

Surely I misunderstand the meaning behind the post.  I do my best not to feel sorry for myself and don't tell people about fibro unless it is necessary.  I do what I can and stop when I can't (usually).   It feels like the post was saying that all we have to do is keep a positive attitude, aim high and not let the fibro slow us down or impede our walking and other activities and it wont.   That is not working for me.  I have tried it already.  Please explain. 

I am sorry if I have upset anyone. 

Sue

Posted 2/17/2009 11:22 PM (GMT 0)
Sue, I'm sorry if I upset you.  I have said many, many times that you need to pace yourself.  I have to do that all of the time.  I also said, in that post, that I have had trouble walking numerous times over the years, too.  I mentioned that I do use a cane at night because of the pain and stiffness from lying in bed.  I don't want to fall.  I was reading that Austin thought she was going to need a walking aid...all of the time.  (At least that's how I understood her statement.)  I was trying to encourage her and let her know I have had those problems and they did get better.  I kept moving.  The way fibro affects me is I will have great difficulty for a while and then it disappears and something else pops up.  But, I do use a cane if I need to and I carry it along with me when I travel.  I have a collapsible cane,too. 

 

As far as aiming high, I was talking about aiming high for your ability.  What is "high" for one isn't "high" for another.  There are things I would never even attempt if I stopped to think whether or not I could do it.  I give it a shot and many times I'm surprised that I am capable of achieving it!  That's what I was trying to get across.

 

If I had young children and was heading to Disneyland for vacation, I'd probably need help for that.  My husband and I did take our children to amusement parks...not as large as Disneyland, and I would find a bench to sit on while they were on the rides.  So I do know what you are talking about. 

 

I'm sorry that my positive attitude is causing problems on this forum.  I can't help it.  That's the way I live my life and it has helped me to no end with fibro.  I've just been trying to pass this on and encourage people not to give up.  I did state in that post to "Live your life fully and to the best of your ability and you will have a very successful life with fibromyalgia."

 

So, again Statgeek, I'm sorry if I upset you.  This is the best that I can explain my post.

 

Sherrine

 

 

Posted 2/17/2009 11:44 PM (GMT 0)
Sherrine, by no means should you be sorry for your positive attitude! I welcome it...I need something in my life to be positive! lol

This has just been a simple misunderstanding, thats all. Hopefully Sue will understand, if not, ou tried to explain yourself. I think trying to live up to our own standards is a good thing.

I try to live up to my own, even if they seem small to someone else. But, we all have different capabilities and we are all different so... I understand what you said by the way you explained yourself.

hopefully just a misunderstanding, Im sorry if you Sherrine upset you Sue
Posted 2/18/2009 12:08 AM (GMT 0)
Sue, DH and I went to DisneyWorld last October and I rented one of the scooters. There was no way I could have walked (and not because of my fibro, my hips have other problems..) It was really a lot of fun and there were a lot of people using the scooters. Also way too many kids were riding in strollers when they should have been walking, but that's another story. Going all day to a theme park is not a normal activity, so you should take whatever steps you need to make it a good day. Diane
Posted 2/18/2009 12:12 AM (GMT 0)

Thank you for explaining.  What you said makes more sense to me now.  Sometimes it is more difficult to understand another person on a forum because we can't ask each other right away: "wait a minute, is this what you mean or do I misunderstand you?"   And I am glad that we can ask each other these questions and communicate.    Yes.  A positive attitude does help with this illness and no, your positive attitude does not upset me and you should not feel sorry for it.  When I read the post reply, it sounded to me like it was saying to have a positive attitude and that will take care of everything.  Now I understand that you do not mean that.  Now I think what you were saying was that a positive attitude will help us do more than we thought we could do and will help through the tough times and will help us not give up.  It also helps alleviate self-pity which can make us feel even worse.

Sometimes I have trouble with giving something a shot and doing great for the first part, then getting stuck halfway through and wondering how to finish.   Like with Disneyland, I would be fine in the morning, but by noon, I would need a chair.  So part of me would not want to get the chair in the morning because that would be giving up early.  But another part of me knows I would have to get one in the morning because there won't be one available at noon and that it is actually that is smart thinking to do that.

Hopefully it makes sense that a lot of my own confusion as illustrated by my last paragraph helped me to misunderstand your post.  Thanks Sherrine for clarifying so gracefully.   

Sue 

Posted 2/18/2009 12:36 AM (GMT 0)
what ya' gonna do now?.... I'm going to DISNEYLAND! :-)

You go Girl! I haven't been there in ages. I live close to it but I can't stand soooo many people. But if I did go I would definitely rent me a scooter. I think your right about getting one in the morning first thing because they propbably would run out of them by noon. Best to be prepared for anything....just like you keep your cane (waappow) handy for any other occassions that come up.

Are you going to the magic kingdom this week? I hope it doesn't rain on you guys. Hasn't the rain the last couple of days been a nice change? It sucks driving in it on the way to work though...but hey, dh drives so what I'm worrying about...lol!

Take easy lady,

Hugs,
Posted 2/18/2009 1:09 AM (GMT 0)
Thank you, Statgeek!  Please remember, though...I have had fibromyalgia for 22 years.  I've had my positive attitude longer than that and it hasn't taken care of everything.  I still have pain and fatigue and many problems in my life but my positive attitude has kept me going and far happier than without it.  I do know I am taken the wrong way sometimes because I have had to explain myself on several occasions.  I do really try to convey my message to the members to the best of my ability and sometimes spend as much as 45 minutes writing a post, but I sometimes don't quite make it. 

 

You are correct that there would be no wheelchairs if you don't get one in the morning.  If nothing else, you can load all your stuff and the things you end up buying in the wheelchair...kind of like an adult shopping cart!  LOL  Then, if you find you need it to sit in, you have it available. 

 

I had lunch with a friend yesterday and we were talking about Busch Gardens.  I was telling her how I walked through the park and had to sit on a bench for the last half hour so I could make it out to the car.  I didn't think I was going to be able to make it, either.  So, for something as large as these theme parks, it is wise to get the wheelchair.

 

But, I still will encourage you to keep moving and exercising to use the muscles so you are walking in your everyday kind of life.

 

Sherrine

Posted 2/18/2009 1:19 AM (GMT 0)
Actually Sherrine, even I don't know exactly what I meant! lol   My leg was just hurting so bad this morning, that I didn't feel like I would ever be able to walk again!! 

 

It's some better now, and I do think that eventually I will have to rely on a walking aid when I'm having this much trouble (I also have trouble with my hips, and I've had 2 back surgeries), but I will try to stay as active as I can as long as I can. I really do appreciate your positive attitude and your good common sense. I look forward to your posts, and sometimes ask myself, "I wonder what Sherrine will say about that?" :-)

 

Sue, we are hoping to go to DisneyWorld next year (it's closer than DisneyLand).  I so know what you mean about the scooter.  I will probably need to get one to be able to last throughout the day, but I soooo am not ready for that. I guess maybe it is a pride thing with me. I admire people who know what they need and just do it. 

 

I hope you have a WONDERFUL time, and if you have to get a scooter, maybe you can put a bell and a flag on it to jazz it up a bit.  devil

 

Hugs - Austen

Posted 2/18/2009 5:51 AM (GMT 0)
hello All; I have been listening carefully to a phenomena which seems to be gaining momentum, in Fibro Land. That is the use of amphetamines in order to function, in particular, Adderall. The theme seems to be that one must "keep moving". Somehow I feel as though we are taking a giant step backwards as it is well documented that long term use of amphetamines can sometimes bring on psychosis, among other things. I don't want to go "way political" here, but as the "Ritilin"cure for bored, underchallenged children seems to be falling into disrepute, and you have to know what lobbyists for large pharmaceutical outlets maybe getting up to, in order to keep their money makers mainstream. Any responses? 
Posted 2/18/2009 7:28 AM (GMT 0)
Sue,
Even though you may not need the scooter in the morning, it might make your whole day better if you use it as much as possible all day. On the occasions I've needed a scooter, I've had a family member drive it around a bit so that I could do some walking. Sitting all day would bother me as much as walking all day.

I guess it has been easier for me to accept using a scooter because I've only had to use one while recovering from various surgeries. I knew it was temporary so I didn't have to feel "old and broken." My husband and teenage son think the scooters are fun and will gladly take a turn driving so I can do a little walking.

A few years ago I met a woman dying from ALS. She bought a beautiful and very expensive cane as soon as she needed one. She knew she might only get to use it for a few months because she would soon lose the ability to walk. She told me she loved her cane because it allowed her to walk safely. Her plan was to use the cane until she needed a scooter, then donate the cane to the ALS society so someone else could enjoy its beauty and function as much as she did. She chose to look at canes and scooters as tools to help her, not as signs of weakness.

Sue, try to look at a walking aid as a tool to help you and add to your life. It's not a weakness nor a reflection on your character. I know it's hard to do, had I not met this woman, I'm not sure I would have so easily accepted this thought.
Posted 2/18/2009 11:40 AM (GMT 0)
Hi Tyno,

 

I take adderall.  And if it was not for that I would be in bed.  I spent two full years in bed before I got adderall. 

Have you ever suffered from ADD.  When all these thoughts are coming at you from different directions.  You can't focus or think straight.  It is very frustrating.  Though I agree with you that maybe it is too easily prescribed for children.  It doesn't give the stimulant effect when you have ADD. 

But if I wouldn't have gotten prescribed adderall, I don't know where I would be today.  I may not be able to do much, but I am so thankful that I am not dieing in that bed.  Just think, two years of listening to my life go by because I didn't have the energy to even get up and walk.  I had to lean on furniture just to stand up.  So remember, though it is abused, as most drugs are, it is good for some of us.

I hope that you have a good day.

Hugs, Karen

Posted 2/18/2009 12:30 PM (GMT 0)
My son needed to take Ritalin as a child.  He was not bored and unchallenged...and neither was I!   shocked   He was everyplace.  While I was cleaning up one thing he got into, he was getting into something else.  At three years old he shinnied up an awning pole and was on the roof of the house.  (He was in our fenced back yard playing in the sandbox a few minutes before he was on the roof.)

 

He couldn't go to nursery school because he couldn't sit still long enough and had no control.  After taking him to a pediatric neurologist at the Cleveland Clinic, Ritalin was prescribed and he settled right down and started nursery school.  The difference was night and day.

 

These medications are good medications if they are not abused.  I don't know about Adderall, but Ritalin is generic so the drug companies aren't making a lot on them.  Once a drug is developed by a company, they can keep it on the market for 20 years before it is allowed to be made a generic.  The companies spent a lot of money developing these medications and so this helps pay them back and also gives them money to develop other meds.  I, for one, won't complain about our drug companies. Afterall, they just might come up with a wonderful medication for fibro. 

 

Sherrine

Posted 2/18/2009 12:37 PM (GMT 0)
There is a generic form of adderall, actually it is relatively cheap. But it is the imediate release. There is not generic for the extended release yet.

My mother took ritalin, but it was for fatigue. They didn't know much about fibro back then, but when I look back on it, I think that she had it too. All of the same symptoms and I have now.

hugs, Karen
Posted 2/18/2009 1:11 PM (GMT 0)
Hey guys: I was singlemotherhooding it, with a three year old who climbed the door casings, was into everything far faster than I could clean up, talked so much and so fast, his baby brother didn't bother talking until he was three. His first words were "I cannot talk, E-----, never stops talking. This was a gifted child. A couple years later, a school official aproached me and more or less insisted he be put on Ritilin. I took him to a neurologist and so he went on it. He took it for three weeks, his grades improved remarkedly, then he asked me if he could stop taking the medicine since his grades were better, and it "made his belly hurt". It was a tool that he can rely on as his thoughts start running through his head, at a hundred thoughts a minute as he called it. Several years later. the younger brother started having trouble in school. I took him to a neurologist who promptly prescribed Ritalin. He could not tolerate it, at all, and a school psychologist identified a learning disability. A whole different ball of wax. I am not protesting Ritalin, Adderall, or whatever stimulent for ADHD or ADD. I am inquiring into a trend I noticed in the offing of prescribing Adderall or Ritalin for Fibromyalgia. There is a difference. If you need stimulents for ADD, that makes sense. But are we now going to use them for Fibro? That was my question.
Posted 2/18/2009 3:11 PM (GMT 0)
There may be a trend of people taking Adderall or Ritalin for Fibro...because it helps! There is nothing wrong with people taking a medication that helps them get out of bed and remain engaged in life.

Risks and side effects exist with all medications. When the benefits strongly outweigh the risk, I believe these medications are worth a try.
Posted 2/18/2009 3:47 PM (GMT 0)
Kerri,

You took the words right out of my mouth. I need the adderall to function. It is my pdoc prescribing them for me as a stimulant. Not for ADD. Though he prescribed me Concerta (which is same as ritalin, only in a different form) and provigil to try first. The concerta was not consistant and the provigil gave me cold sores, sore throat and diahrrea. But he trusted me enough to give me both prescriptions at the same time and let me make my own decision. I felt really good about that. A doctor actually trusted me to know my own mind and body.

I have been taking adderall for about four or five years now. And like I said in my previous post, if it weren't for that, I wouldn't have the energy to get out of bed at all. I spent two years in bed listening to my life go by. That is no fun at all.

So yes, if they are needed for fibromyalgia, they should be prescribed.

Hugs, Karen
Posted 2/18/2009 4:33 PM (GMT 0)
Hello, I am new as far as posting but have been reading posts on here for a long time. The whole Adderall conversation got me to make my first post! I have Fibro, and Hyper Mobility Syndrome....Not to mention way too many other things...Lol. I have been taking Adderall for about three years. It has made the GREATEST impact on my health and my life!!! I started taking it because I could not focus, or function. I could not "start" or "finish" anything. With the Adderall I am a new person. I function now! Yes I am still in pain. Yes I have days that I can not stay awake no matter how hard I try. Yes to all of the daily struggles....but I am way better with it!!!

It may not work for everyone, but I will never ever live without it! I have tried sooooo many Prescription drugs and none of them have done anything for me, except Adderall. Don't knock it till you try it..... turn

Julie
Posted 2/18/2009 4:48 PM (GMT 0)
Hi Julie,

 

Welcome to the HealingWell fibromyalgia forum.  It is wonderful to have you here.  You will find that there are a lot of fantastic people on the forum. 

There is also a wealth of information as you probably already know from reading.  Were you a lurker?  I am so happy that you joined us.

Of course I am happy because you agreed with me about the adderall.  I spent too much time not being able to function at all either and I, like you, couldn't live without it.  It has been a life saver.  I also still have pain and tired days, but I am not stuck in the bed and that is all that matters at this point.

Feel free to post on any thread, and eventually you might want to start one of your own.  There is a lot of advice here.

I hope that you continue to stay with us and I hope that you have a wonderful painfree day.

Hugs, Karen

Posted 2/18/2009 5:13 PM (GMT 0)

It is sad that people are misunderstanding the meaning of a positive attitude. Believe me I didn't start out on here with a positive attitude, I was very angry with this DD and I still have to work daily to keep myself up. I have to take anti-depressants and I need a change in them again to see if I can get to a higher level above the depression. I want to be happy and positive and I owe a lot to some of the people on this forum, Sherrine being one of them, for teaching me that just because I have fibro doesn't mean I have to go through life being angry. In Danielle's signature, I think it is, it says you can be angry or you can be positive they both take the same amount of work, I'm sure I didn't quote that right but that is the message it sends. In the letter to normals it says just because I chose to be happy doesn't mean I'm healthy.

 

I really do hope that you will all stick with this group cause there is a lot to learn from those that have had fibro for a long time and how they have chosen to deal with it. You may not see it that way right now, I didn't at first, but I'm sure glad I stuck around here and took some great advice to heart.

 

Now are we all going to be where Sherrine or "Lil Miss Sunshine" ,as I nicknamed her quite awhile back is??? I'm sure I will never reach her level of optimism, she is an exceptional person that I admire cause I haven't met too many people in my life that have jumped the hurdles she has and got to the other side without it dampening their spirit.

 

luv and hugs

Marlee

Posted 2/18/2009 6:28 PM (GMT 0)

Julie,

I also have hypermobility joint syndrome along with fibro, arthritis and myofascial pain.  How does the hypermobility affect you?

Regarding the drugs discussion, as a clinical psychology grad student, I have seen instances where drugs tremendously helped kids with adhd and instances where it was prescribed when it should not have been.  Looks like Tyno has been in both places.  Lately I have been doing an internship at the court and mental hospital.  Both places I deal with people who are mentally ill: some have comitted crimes and are being declared incompetent, some are elderly dementia patients, some are drug users and a whole lot of people in between.   While there, I learned about two people who were really smart - top of their class - really successful until they started taking narcotics and now their brains are basically mush.  I know, two people isn't very many and they probably abused it and that is not the norm.  Then I heard about other people who got bleeding ulcers from too much anti imflammatories.  Those got me thinking and wondering about my medication.  Do any of you ever wonder about it too?  I know we need the medication to function.  How do we keep from overdoing the medication and messing up  our bodies further?

Sue

Posted 2/18/2009 7:48 PM (GMT 0)
I often worry because of the amount of different pills that I have to take. But my blood works are coming back normal. I take eight different medications.

Hugs,Karen
Posted 2/18/2009 7:53 PM (GMT 0)
Sue, I always think about what I am taking.  I try to take as little medication as I can get away with and I always check interactions.  I speak with my pharmacist and doctor whenever I start anything new...be it a medication or an herb or a supplement. 

 

I'm one who has taking NSAIDS for aver 20 years.  When I was first given ibuprofen it was a "prescription only" medication.  They weren't coated either and they didn't know that they could cause ulcers.  Here I was, with Crohn's disease that causes ulcerations throughout the digestive tract, taking ibuprofen.  But I did and I took it for 16 years before I got an ulcer.  No one had ever mentioned that you need to take it with food because back when it was prescribed to me, they didn't realize that!  (That's why I always say that I take ibuprofen with food on the forum.)  Anyway, I stopped the ibuprofen and got to the point that I could barely get out of a chair.  I spoke to my doctor and he agreed that it was a quality of life issue.  So, I started taking the ibuprofen again around four years ago.  I always take it with food and I also take Prilosec to help protect my stomach on top of that.  That helps protect against ulcers 70% of the time, according to my doctor.  Also, my doctor runs a liver panel every six months on me to make sure my liver is healthy, since all these medications are filtered through the liver.  My liver is in terrific shape so the meds I'm taking aren't hurting me.

 

I went into this detail to show that we really need to keep ourselves informed about what we are putting inside our bodies.  I have pain and I know I will always have pain...unless they find a great medication for fibro.  So my goal is to take as little "chemicals" as possible and still have control over the pain and have quality of life.  

 

Sherrine 

Posted 2/18/2009 7:57 PM (GMT 0)
Sue- I only take the adderall and tylenol any more. The Tylenol is for the headaches I get. It doesn't touch the body pain but I took so many "trial" meds that were really hard on my stomach. I decided NO MORE! I have developed a distaste for Pharmaceutical companies and the FDA....except for my Adderall....LOL. I rely on ice packs, hot baths, Vitamin & mineral supplements, herbs and being as positive and happy as I can! I have been researching for years on what could possibly be missing in my body, or what I could have too much of. I have not found anything that is 100%, but neither have the expensive prescribed drugs that I had tried. I have found that Magnesium and a Vitamin B complex daily are musts for me! As Marlee stated, it is not always easy to stay positive. I take vitamin D during the winter months because I live in Wisconsin. Being cooped up with a lot of over cast days can make me depressed and bring on a lot of pain. It really has helped me a LOT! I also take Glucosamine, Vit E & C, Multi Vit, Ginko, fish oil...ummm, I think that's it....It takes at least 1-3 months to feel a difference. Actually, I didn't realize how well it was working until I was without them for 2 weeks (long story). I started feeling as bad or worse then I had before I was diagnosed back in 2002. Then it hit me, I had not been taking my daily vits!!!!! It works for me. It may not work for everyone.....
I found a fantastic MD that is working with me and believes in what I am trying. I gave up my Neurologist because all she wanted to do was push pills at me. To me that is a band aid, not fixing the actual problem.
In NO way am I saying all drugs are bad, or I would not be taking Adderall. I also take blood pressure meds, so I do find some use for them. I prefer not to if I don't have to, that's all. Everyone is different....

As for the Hypermobility and how it affects me....It made a lot of sense once my doctor explained how there are some studies showing a connection between the two. If your joints are too loose and flexible, it only makes sense that it would cause your more pain in your muscles, thus making the Fibro pain worse...right? I am still researching that as well.....I too have Arthritis, and my Doctor is looking into Thorasic Outlet Syndrome because I have such aweful neck and shoulder pain, with numbness down my arms (back side) into my pinky and ring fingers that wakes me at night. I had Carpel Tunnel surgery on both wrists which helped the numbness and pain in my other fingers, my wrists and hands. Still have the pinky, ring finger numbness.....they wanted to rule out the carpel before going any further on the Thorasic theory....who knows???...and of course, why not??? Lol

Anyone else ever dealt with the Thorasic Outlet Syndrome thing? I need info since this is all new to me....

As far as my brain being Mush from the Adderall.....I'll take my chances. The Fibro Fog was worse!!!

Julie
Posted 2/18/2009 8:01 PM (GMT 0)
Julie, I take malic acid/magnesium supplements.  There is a link in the fibro 101 thread all about them and how they work in the body.  They don't work for everyone but they have helped many...including me.

 

Also, many with fibro have vitamin D deficiencies.  I do and I live in Florida!  I have to take 2,000 IU daily.  So, have your doctor check your vitamin D level next time he/she is ordering bloodwork. 

 

Sherrine

Posted 2/18/2009 8:31 PM (GMT 0)
Sherrine, I also take ibuprofen 600mg every 4 to 6 hours.  I have to say it is because of your posts that I have come to realize I need to take it with food.  I have been taking it for about 4 years & was beginning to have stomach cramps when I ate a large meal.  I have found this has decreased & may even be gone because of trying to remember alway to take it with food.  Thank you.  I have to say I do like your positive attitude, you have been through this for a long time & have alot to talk about on pretty much any question asked.  Hugs, Denise

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