New here, looking for friends

Hi Coach,

     Welcome to the site. I was just doing a check before hitting the hay as I have to get up at 4 in the morning

for work.  You've come to the right place. The people here awesome. I found this site a couple of months ago

and it's nice to be able to talk, laugh or vent as the need arises. I have had arthritis for 48 years and was

diagnosed with fibro about 5 years ago. The pain can get very intense at times. I've been there with the O'D'ing

on painkillers. I've gone to work with my words slurred and so strung out from lack of sleep I could barely

function. I've been on herbal alternatives for nearly 5 months now and have only taken 2 doses of OTC painkillers

in the last month.

   I know keeping up with kids can be hard  as I have my 3 grandkids alot. They're 5,8 and 13.

    I hope with the right mix of meds you'll be up and going soon. It's hard to give up or give in. My alternative to

the TV is books. I read a bunch of books and like most genres. The Dean Koontz "Frankenstien" series is great.

        Nana Monster

Welcome Coach to the home of friendly fibromites,

You sound like a man of generous spirit, starting an organization to help others.

Sorry you are hurting. We understand the pain. I have found this forum to be caring
and supportive. We are here to help each other. I am glad you have found us.

I am a animal lover too, I have two cats, both crazy but lovable. Having Tigger gives
you an opportunity to get out for daily walks. Regular excercise is really important.
It gives me more energy. The tricky part of exercising is knowing your limit, knowing
when not to overdue. Somedays I can walk 3 miles and other days I can only walk a
few blocks. A change of scenery is good and it helps with stress.

Come and post often, you will meet a lot of nice people here.

We Care

Robin

Hi, Coach, and welcome!  I'm so glad you found us and joined in.  Chess is such a neat game.  I love playing it but there aren't too many people that know how...at least that I know.  You can play it on line.  I play Bridge on line and that is good for the fog too, since you have to remember the cards that have been played.  It's good to do things like that to keep your mind active. 

 

I'm a widow so I'm pretty much by myself, too, but I rarely watch television.  I have hobbies that keep me busy.  One of my favorites is doing genealogy and I've come a very long way with that.  I'm putting together books for my children so their family history will be passed on.  I have gone back as far as 1630 and I have learned a lot doing that.  So, maybe that would be something you would enjoy.

 

BUT, you need to get out of that recliner!  If you sit or lay too much, you will be stiff as a board and your pain will be worse.  You should do gentle stretching exercises and also exercise.  Walking is a wonderful exercise for fibro as well as swimming, if you have access to a pool.  But, keep moving!  You will feel better for it. 

 

Moist heat and hot showers feel great with fibro.  I don't take narcotics.  I use ibuprofen with food and extra strength Tylenol, along with malic acid/magnesium supplements and vitamin D3.  These have kept me on my feet enjoying my life.

 

Be sure to check out the Fibro 101 thread...the first thread on the forum.  There are links to good information all about fibromyalgia, including links about malic acid/magnesium supplements and how they work in your body, a link about vitamin D3, and a link with some gentle stretching exercises that really do help.

 

Read back post and don't hesitate to ask questions.  We are here to help you.  I'm happy you found us and I hope to hear more from you soon.

 

Sherrine

Coach Patrick

Welcome Patrick you have found a great group of people , I am Kinda new to this board, I used to visist another board but there became to much bickering for me to cope with. so far this is a great place and lots of great people. who all seem to support each other and get along great.

you can vent when things get to be to mush or come for advise. you will even see some post when one of us is checking a symptom to see if its related to Fibro or not.. as there seems to be soooo much with this.

I Have Fibro and CF. Arthritis in my feet,hands,wrist, anckels , neck and back. Wow . I also suffer with real bad adhisions inside so no heavy lifting for me.

I also live in AZ Glendale area or real close to it. LOL.. If you up to it I know of a Meet up group in your area. just go to google and type in meetup.. I personally do not have the energy to meet people out side of my home. as I still work.. but work from home doing a split shift. this about does me in every day . but we must do what we must do .my dear husband can not support us on his own. but he is a great support for me with this Fibro.

Fibro is hard life , I was dx'ed about one and a half years ago. so its kinda new for me , still learning , I am sorry you also have to live this life.

Welcome , look forward to getting to know you .

Take care.

 

Hi everyone!
Thanks for all the kind words! I'm not sure how to reply to a single reply so I will try to reply to everyone one at a time by name.

Hi Danib- I would share the charity's website but I'm afraid I will be kicked off for advertising. Is that true? Your father-in-law can go to the Unites States Chess Federation website and click on "clubs" and contact a local chess club. There are many chess clubs that are not on the list so emailing the contact person should result in finding the closest club to him.

Whatever you do don't mention chess in any Alzheimer's forums as you will be attacked despite the scientific research. Playing on a computer is good (I recommend the program Chessmaster- available at Best Buy), but playing people adds an important social element which also helps prevent Alzheimer's and dementia. Unfortunately once you have dementia, you can't learn how to play chess, so it is important that all adults play throughout their 40's through their 60's and beyond to get the best effect. The research shows that people who play chess are 60% less likely to get Alzheimer's than those who watch TV. You should play chess with him as everyone should learn how to play. Doing so would save more than 200,000 lives this year alone in the US from suffering needlessly from Alzheimer's. I'm sorry about your Granny dying from Alzheimer's when many times it is so preventable. Thanks for the encouragement. Sorry about being off topic- back on.

This email represents a days worth of work for me. At best I can only type for about 15 minutes at a time before having to go back to my recliner to rest so I had to take several long breaks to type this. My typing is getting slower too. Without my pain pills, the pain is at level 8+ and I have thought of suicide when I accidentally missed taking my pain pills. With my pain pills I am very dizzy and weak. I can't drive or leave the house or any other activity without paying for it in pain. I hate the commercials where the lady takes the pill and keeps on working. I am on disability for good reasons. If I spend 1-2 hours acting like a normal person (out of my recliner) either standing or sitting in addition to more pain all over my body I get a pain in my back that feels like someone stuck a knife in it, and it takes several hours in my recliner for the pain to go away. That is why I had to stop teaching chess to adults. I had to take a long rest between paragraphs to write this. The more exercise/activities I do the more pain I get. This idea that fibro sufferers need to exercise is a joke to me. I am not John Wayne where I say "Shucks mam, that arrow in my back is nothing, as long as I saved the wagon train." I'm no hero.

My fibrofog is bad. It is like a very mild Alzheimer's. The other day I wished my wife a happy anniversary and it was her birthday. I often don't know how old I am or what month it is and I have a hard time remembering words I know. I have to call my wife at work and describe the word to get the answer. I appreciate all the replies and hope to reply to each. Thanks all for the encouragement! I will comment on the other replies on another day. Coach Patrick

Hello, Patrick, and welcome. I am so sorry that you are having a difficult time right now. But, yes, you have come amid friends here. Having the support of this group and a listening ear has really helped me get through a couple of rough times. Also knowing that I was not alone with so many of these weird symptoms.

But I do agree with so many that have posted here already. Sitting in your recliner is probably one of the worst things you could do for yourself. The more you sit, the more you will hurt. The more you hurt, the less you will want to move. My fibro is really well under control right now, but I make sure I exercise almost everyday. I've had 3 flares this summer. My first and longest was from a week on holidays visiting family where I did nothing but sit on my rear talking, or sitting driving from place to place. On one of the last days, I was so achy and fatigued. My dh asked me to go for a walk. At first I didn't want to, I felt like I didn't have the strength. But he pushed me until I finally went, and the relief from the aching was almost immediate. I still hurt, but not as much. It took a long time to recondition my body, but I did a little more each day.

Please keep posting, adn let us know how you are carrying on. Take care!

Patrick, I'm going to chime in here one more time.  I hope I'm not wasting my time but I do want to see you start to enjoy life again.  You do need to keep moving with fibromyalgia or you will be very stiff, in more pain, and your muscles will get weaker and weaker.  All of us with fibromyalgia don't hurt as much when we aren't moving, but we do want to live our lives and not have fibro and depression dictate how we will live.

 

I had great difficulty walking a few years back.  By being sedentary, I allowed my muscles to get weak and, because I wasn't moving, I put on weight, to boot.  I decided this wasn't the way I wanted to live.  I started walking and could only go about 6 houses down before my feet and legs were screaming at me.  I turned around and went back home.  I was really surprised but that made me more determined.  The next day I was out again.  After a few days, I was able to walk further and this continued as I continued to walk.  Now, the first thing I do in the morning is walk my dog for one mile before coming in and having breakfast.  I would have never believed that I could be doing this back then.  Yes, I still have pain, worse in the summertime for me, but I continue to walk because I know it's good for me.

 

I went out and bought a walking-in-place video.  If I did it for 15 minutes, it was like I walked a mile.  I popped it in my recorder and started out great.  Within a few minutes my legs hurt, felt like rubber, and I was out of breath.  I had to stop.  The next day I popped it in my recorder again and was able to go further with it.  Within a few weeks I could do the 15 minutes with very little pain and I was not out of breath.  Plus, it revved up my metabolism and helped me with some weight loss.

 

This is kind of like what body builders do.  When they started out, they couldn't possibly lift the weights that they could after continuing with exercising.  I'm sure their muscles hurt, too, but they didn't stop because of that.  They continued until they got the results they wanted.

 

That's how it is with fibromyalgia.  Yes, you are correct that we all are different but we all do have pain.  Some have more pain than others but we don't stop because of it.  After all, we have a life to live and I know, for me, I don't want it passing me by.  We keep searching until we find what helps us control the pain...not get rid of it.  I don't think there are too many pain-free fibromites in this world, if any!  

 

I really want to help you get moving again and doing some fun things in life.  I've had fibro for 22 years and it could have ruined my life if I allowed it to.  I didn't.  I've done some traveling, been snorkling, and even parasailed.  I knew I would pay for some of this with added pain, but it was worth it.  Please start moving again.  If you need to use a cane, don't hesitate.  I use one at night because I'm so stiff and I don't want to fall.  But, if you continue to sit in that recliner, not only will you get weaker and weaker and even the slightest movements will hurt you, but you will watch your life pass right before your eyes. 

 

I know you are depressed about all of this...most of us fall in that catagory and many are taking antidepressants.  Having chronic pain is depressing!  But, if you start to get out and look at all the beauty around you, I think you will feel better and better.  You need to pace yourself.  You can't hop up and go jogging!  LOL  But, little by little, with some effort, you can start moving again and you will find you can move more with less pain as you progress with regaining muscular strength. 

 

I will not be mentioning this to you again unless you ask me for help or want some questions answered about this topic.  You are an adult and can do what you want.  I'm just trying to help you and so are our other members here.  Life is made up of choices.  You can choose to continue doing what you are doing or you can choose to start moving and living your life again.   I hope you choose the latter.  By the way, I'm on disability, too.  Have a good evening!

Sherrine 

Hi Coach Patrick and welcome. When I joined this forum two years ago I was in a very bad place physically and mentally. After losing a grandson in Iraq I did nothing for three months but sit on the couch all day depressed, didn't have the desire to do anything. I joined this great group of people and they kept telling me I had to get up and move, you have to be kidding I didn't have the energy or will to get up and move unless I had to. But for whatever reason I did listen to them and started to get up and do more and it wasn't easy at first cause I had lost a lot of strength. I will say that fatigue is my biggest problem and I don't have the pain you talk about, I can overcome the pain most days with tylenol and amitriptyline. If we don't use our muscles we lose them and it's a hard road back to regain the strength. I have two dogs a bichon that is a year old today and a shih tzu that is almost 6mos old. They have energy and they have to get out at least once a day to run off that energy or they drive us crazy. They are my reason for getting out even when I don't think I have the energy to do it and that is one reason why I got them.

 

I really hope you get better soon and will try your best to get up and do a little more each day.

 

luv and hugs

Marlee

Based on what you are all telling me I don't have fibromyalgia. What my body is telling me is...
Moving= A lot of Pain, Not moving= less pain.

For instance. Yesterday afternoon I had to go get my eyes tested and get tested for new glasses. I had taken my pain pills before going. By the time I got dressed I was exhausted, dizzy and fatigued. My wife drove me to the Dr. and the process lasted about 1 1/2 hours. During the visit I had level 7-9 pain most of the time having to alternate sitting and standing even to interrupt the Dr.'s exam to do so. By the time we left I had the feeling that someone had stuck a knife in my back and my feet, calves and hips were at level 8. During the process of seeing the doctor I had to moan out loud most of the time especially when moving. When I got home I could barely walk and needed my wife's assistance to change clothes and get into my pajamas and get back into my recliner. After about 3 hours of resting my pain levels were back down under 5. Now I know that if I had not gone to see the doctor I would not have suffered all that pain if I would have stayed home.

So you are all telling me one thing and my body is telling me another. Who should I believe? I do get up and down from my recliner all day long to go to the bathroom and write emails and get snacks. I do stretch some too, but not religiously. Doing more than that sends my pain levels up into the 6-9 range. I will admit it. I am a coward. I am afraid of going to see the Dr. and suffering all that pain but I do it because I have to. Every time I leave the house I have to ask myself, is the activity I am going to do worth all the pain I am going to suffer. Going to see the Dr. is worth the pain because I have to see the Dr. or I don't get my pain meds. Is going out to dinner worth the pain? Frankly no. Is going out to a movie worth the pain? No again. And unfortunately I don't believe that teaching chess to adults is worth the pain though I would greatly love to do so.

You are all suggesting that I take baby steps. I can go for that, but right now doing anything out of my recliner is playing with pain. The only real pain I suffer in my recliner is sometimes when I wake up from sleeping when I accidentally sleep through the time that I should have taken my pills which is at 12-6-12 and 6 on the clock and the effect of the pain pills has warn off. Joanne, my wife has been very good at waking me up at 6 am to be sure I take my pills.

Because you all seem to agree and I believe you all have what is best for me at heart I will take your advice which is I believe to flirt with the level 6 pain level and not hide from it. Your theory is that if I keep flirting with level 6 that in time I will be able to do more and more with less and less pain. I will start with walking Tigger in the morning and being more religious in my stretching. I will find a stretching website. My goal is to find a way to go out to dinner or see a movie or go to church and come home not feeling like a gang of thugs had attacked me with baseball bats and stabbed me in the back. (One reacquiring nightmare I have I believe caused by outings that cause so much pain)

Thanks for all your support. I will keep you all updated on my progress. Hope this photo shows...
VIEW IMAGE

Absolutely, I agree, and i was like you coach. I didn't believe it until i started walking. I couldn't get out of bed some days. But i finally listened to my doctor and everyone here. It's a miracle!!!! I can walk much better now. I was only able to walk maybe a block, on a good day. Now i'm going around a block or two. I wan't to get even further. but right now I'm just going with my body...Your not to overdo it either. But i feel sooo much better for it

Please believe in this group, they really know what they are saying.

Good luck Coach... Laura

Coach...If it was me who you were refering to as one who thinks you don't have fibro well I'm deeply sorry for giving that impression. I do know you have it. You describe perfectly how I feel. Sore, burning skin..sharp shooting pains in many places of my body. For a year and a half I couldn't sleep and not sleeping made it extremely difficult to move at all.

I've been here religiously now for about the past three months...reading, asking questions and sometimes shooting my big mouth off but I really am trying to be helpful.

When I said I didnt have fibro at the time I went to the gymn, I meant just that but would now if it was still here. I need it now more than ever. I always wondered why some didn't use all of the machines, now I know. I wouldn't either now but it's a hard lesson to learn ;)

Now I use my glide rider, which stretches my body for me by my just moving my legs forward and back. When I go to wal mart I use the riding cart. Sometimes though I don't depending on my pain level that day and mostly my fatigue.

You're definitely one of us! Everyone wants this to go away. Tomorrow wouldn't be too soon ;)

Keep smiling

Jhemi

You're definitely one of us.

Coach, I'm not sure.  I'll have to do some asking around.  You see, anyone in the world, even if they haven't joined HealingWell, can see and read our posts.  They can't respond to a post unless they are a member.  So, I'm not sure that would be a good idea.  Maybe I'm being too cautious.  I'll let you know what I find out, okay?

 

I just want to congratulate you!  That was great what you did today, and see, you weren't is as much pain.  Yes, you will hurt but that should get better as you continue.  Perhaps, you can walk around a little more this afternoon.  Breaking things up in "sections" and doing a little each time is pacing and we all need to do that with fibro.   

 

I live in Florida so I know all about the heat.  In the summertime, I have to set my alarm and be out by around 7 AM to walk the dog.  The sun is just coming up but it's still warm and muggy.  If I waited until 8 AM it would be far too hot for both me and my dog.  It's starting to get a little cooler now.  In the winter, I eat breakfast before I walk Sabra and that's nice.  It gives my meds time to work. 

 

We get a lot of fatigue with fibromyalgia.  Chronic fatigue and fibro are so close that many think it's the same illness.  We have some people on this forum whose fatigue is worse than their pain!  I know when I'm flaring, I have far more fatigue.  I think it's the pain, and the lack of sleep because of the pain, that does that.  I do know, for sure, that is isn't any fun.  I really hate it when I'm dragging. 

 

What I do for my fatigue is, first of all, be on a sleep schedule.  I am usually in bed by 10 PM and I am up by 7 AM.  That gives me 9 hours of rest.  I wake up several times during the night but I can't help that.  I don't lay down and take naps during the day.  Sometimes I'll doze for about 15 minutes...I think those are power naps.  I will start to poop out in the afternoon and I will have a cup of tea and that perks me up.  So, that's how I handle it.

 

Along with rest, don't drink too much coffee.  The caffeine in a cup of coffee is greater than in a cup of tea.  If you drink a lot of coffee, that will prevent you from getting the rest you need.  We all need to sleep the best we can to help with the pain.

 

I'm so happy that you came on and told us about your morning.  You made my day!  I hope to continue to keep us up to date.  If you have questions, don't hesitate to start another thread.  Things can get buried in long threads.  Have a wonderful evening!

 

Sherrine