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Coach Patrick
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 8/31/2009 5:48 PM (GMT -7)   
Hello Everyone This is my first post and I'm having a really hard time handling my life with fibromyalgia. 2 1/2 years ago I got fibromyalgia while teaching chess to children in elementary schools. I didn't know I had fibrofog, but the forgetting and confusion caused me to lose that job because of the pain and going to the wrong school and having a hard time keeping track of the day of the week. When a rhumatologist told me my symptoms were fibromyalgia I thought that pain pills would be the solution but I learned better. After almost dying while using narcotics I finally realized that pain pills were only part of the solution.

Meanwhile I started teaching chess to the elderly and started a nonprofit organization based on research that showed that adults who play chess are 60% less likely to get Alzheimer's disease than those who watch TV. I thought that keeping up with adults would be easier than then challenge of keeping track of children. I started the charity and several chess classes in my area but after about 2 years the pain after each class made it impossible for me to teach any longer. The charity is barely surviving because of the lack of volunteers and the stress of trying to keep it afloat makes my pain even worse. I am now at the point of shutting down the charity due to lack of interest on the part of chess and Alzheimer's groups.

I now pretty much live in a recliner with my dog Tigger and watch TV. I have no friends. I have no relatives other than a loving wife who works and I only see her for 3 hours every evening and on weekends. I am very lonely. I take Lyrica and Tramadol for the pain and Cymbalta & Klonopin for the depression. Which I'm told are the best medications I need some friends who can support me and understand what I am going through. I live in Scottsdale Arizona.

Would you like to be my friend?

Sincerely,

Coach Patrick

Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 952
   Posted 8/31/2009 6:07 PM (GMT -7)   
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

cheekybull
New Member


Date Joined Jul 2009
Total Posts : 7
   Posted 8/31/2009 6:28 PM (GMT -7)   
Hi Coach,

I'm new here too and have found everyone super friendly. It's one of the few places where I feel like I "fit in". Here, people won't tell you it's all in your head or get over it. Everyone is supportive and positive and I think we're all looking for new friends that we can share our daily trials, tribulations and joys with.

Welcome aboard:)
Fibromyalgia, Scoliosis, IBS(?), Hypermobillity, TMJ, PTSD, mild OCD.

Cymbalta 60mg


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 8/31/2009 7:05 PM (GMT -7)   
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
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 955
   Posted 8/31/2009 7:10 PM (GMT -7)   

Hi Coach,

Welcome! You will find many friends here and everyone knows just what you are going through.

I am 58 years old. I was diagnosed with FM over 20 years ago and for the most part, have managed it pretty well. I've tried many approaches to feeling better including acupunture, Chinese medicine therapy, physical therapy, massage, supplements and prescription medication including narcotics. Thankfully, I am not one to abuse narcotics and they have helped me more than just about anything else. The fatigue issue is another story. I left the position I held for many years and began working from home so that I can rest when I need to.

My husband works full time and I too only spend a couple of hours with him in the evening. I really enjoy that time with him and love him dearly. Sadly, I feel he really doesn't understand what I go through, the pain and fatigue. I've pretty much given up trying to get him to understand and just try to deal with it myself, and of course, coming here where others do understand.

Please post often! You are not alone, my friend, not here!

gentle hugs

Miriam


Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/31/2009 8:51 PM (GMT -7)   
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
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Littleneck
Veteran Member


Date Joined Mar 2009
Total Posts : 599
   Posted 8/31/2009 10:17 PM (GMT -7)   
Hi Coach Patrick, welcome. I was diagnosed in February and am in the middle of wondering exactly how long I have actually had FMS, because the more I think about it the further back I go! Anyway, it's a helpful forum, and everyone is nice because we all share at least thing in common!

FMsaddenedspirit
Regular Member


Date Joined Jul 2009
Total Posts : 236
   Posted 9/1/2009 4:57 AM (GMT -7)   
Coach Patrick
 
Welcome Patrick tongue 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.
 
 
Spirit ~


SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 9/1/2009 6:20 AM (GMT -7)   
Welcome to the forum Patrick. We are so glad that you are here. I'm so sorry to hear that you are having such a hard time with your fibro. It is a hard disease to live with at times, but things will get better once you learn what works best for you. It takes time, but it will happen. If you need some friends, especially ones that understand what you are going through, then this is a great place. Everyone here is so awesome. And every Thursday night, there is a chat in the Chronic Pain chat room. We are really glad that you are here. If you need some more info on fibro, then check out the fibro 101 link at the top of the forum. There is a lot of great info there. I'm sorry that you are no longer able to teach chess. I know that must be frustrating for you. But hang in there.
Remember that you need to do some kind of light exercise every day. If you don't then the pain will only be worse. Take your dog for walks. Walking is a great exercise for fibromites, and it is easy to do. Hang in there, and feel free to post any time.
'Cause when push comes to shove
you taste what you're made of.
You might bend til you break
'cause it's all you can take.
On your knees you look up
decide you've had enough.
You get mad.
You get strong.
Wipe your hands
shake it off.
Then you stand.
 
-"Stand" by Rascal Flatts
 
 


Coach Patrick
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 9/1/2009 10:41 AM (GMT -7)   
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

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/1/2009 11:20 AM (GMT -7)   
Coach Patrick, you mentioned you are dizzy and weak when you take your pain meds.
You need to mention this to your doctor. You need to be able to function throughout the
day. You need the right combination of meds to be able to function.

All of my pain is not alleviated, but I do not feel I am in a stupor either. I am one who
believes in excercising. It does not mean you have to jog, but maybe do some gentle
stretching. Sitting in your recliner is only going to make your muscles atrophy and make
you feel weaker. I don't know if there is a pain clinic in your area, but that would be
something to look into. I am concerned for your physical and mental health.
 
 What medications are you on? I take Flexeril when I am flaring and I started
 on Savella about 7 weeks ago. Hope you find good pain relief.
 

Robin


 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements

Post Edited (crazykitty) : 9/1/2009 12:36:46 PM (GMT-6)


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 9/1/2009 12:48 PM (GMT -7)   
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!
possible fibro and trigeminal neuralgia
50 mgs amitriptyline


Coach Patrick
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 9/1/2009 1:54 PM (GMT -7)   
Dear Mamanan
With all respect, that may be the way your body works, but not the way mine does. The more active I am the more I hurt. If I take my dog for a walk around the block not only would it hurt while doing it but I have pain in my feet, calves and thighs for the rest of the day. Any activity I do, I pay for it with pain. The only time I am relatively pain free is when I spend the entire day in the recliner. A "flair" for me is every time I try to do a little more than sending an email or two. The other day I scrubbed out stains from my wife's sink as a birthday present and boy did I pay for it in pain in my arms and shoulders for about a day and a half. Even she recognized that I had overdone it.

Anything more than going to the bathroom, making a sandwich for lunch and sending out an email or two in a day is overdoing it and causes me greater pain. I can't leave the house because driving causes me pain just in turning the steering wheel. By the time I get my clothes on I am in too much pain to go anywhere anyway. This is not the "take an aspirin and go back to work" kind of fibromyalgia. This is the "The government agrees I am unable to work any kind of job-disabling kind of fibro" This is why I am here. It is not possible for me to go out and make friends. I can't go see a movie or go to church or even make love to my wonderful wife Joanne who I love very much. The first time I tired it I called it "The Agony and the Extacy (sp)" I can't shake hands or give her a tight hug. Jugging her hurts me! We kiss a lot, that does not hurt much.

The meds. I take are in my first post. My doctors say they are the best available. I tried the new Savella med. and it was like taking M&M's, I quickly went back on my regular meds.(Lyrica) I was on narcotics for a while (Oxycoton) but one day I woke up and fell over a few times and at the hospital they said my blood sugar was 32 which they described as "life-threatening" (I was unconscious the whole time). My Dr. thought it might have been a combination of my medications plus the Oxy that did it even though the books say it shouldn't.

One of the side effects of Lyrica is dizziness. I have to take Lyrica because it really helps with the intense pain so I have to be dizzy. It comes with the territory. I keep in close contact with my doctors and even look for new doctors. Recently I went through a series of spinal pain injections (about 20 every 2 weeks) but after about 6 sets of injections I felt no better so I stopped that. I'm looking into hypnotism and other fringe treatments.

I think fibromyalgia is different from person to person and maybe from male to female. My guess is that it is caused by a virus and more women get it because they tend to spend more time around children. (remember, I was teaching children chess when I got it) What works for you may not work for me. Thanks for your suggestions though.

With respect and appreciation. I have to stop now. Ouch sad

Coach Patrick

QUESTION TO MANAGER- Why doesn't the image below show when I click on it. It just sends me back up to the top of the page when I click on it.

VIEW IMAGE
Is this photo too big to show?

Post Edited (Coach Patrick) : 9/1/2009 3:44:50 PM (GMT-6)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 9/1/2009 3:34 PM (GMT -7)   
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 


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 9/1/2009 4:40:12 PM (GMT-6)


Piercings
Regular Member


Date Joined Aug 2008
Total Posts : 326
   Posted 9/1/2009 11:03 PM (GMT -7)   
Hey Coach,

Just wanted to stop in and say hi. I don't really have anything new to add, but wanted to know if you were interested in playing chess with me sometime on one of the gaming sites. I'm not a terribly experienced player, but am always looking to expand my skills.

Let me know if you would be interested. And...welcome to the odd corner. :-)

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/2/2009 7:56 AM (GMT -7)   
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
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Jhemi
Regular Member


Date Joined Jul 2009
Total Posts : 223
   Posted 9/2/2009 8:39 AM (GMT -7)   
Coach...I have a suggestion. There are gyms out there..<I know because I used to go to one>..which have machines that do the work for you. Some of them are very low impact...what I mean by that is that you just lie on them and they will move your boday side to side or just your legs up and down and possibly your hips in a circle. If you or someone you know could look into a place in your area which provides this service it might be just the right thing for you. They have them to where it just does a little or alot depending on your circumstances and I found that I was able to up my exercises with them to do alot more than I thought I could. Of course this was before fibro but there were many many patients in there with arthritic pain etc...who used just the ones that moved you a bit. It is important to keep your heart moving and your blood circulating. Bless your heart hon...

Keep smiling

Jhemi

Coach Patrick
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 9/2/2009 3:45 PM (GMT -7)   
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
Fibromyalgia

Post Edited (Coach Patrick) : 9/2/2009 4:58:45 PM (GMT-6)


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/2/2009 4:15 PM (GMT -7)   
Coach Patrick,

We do believe you have fibromyalgia. What we are trying to tell you is that you are hurting
yourself more by not excercising. Your muscles are becoming stiff, you are losing your
flexibility, your muscles probably have begun to atrophy. Unless you start excercising
your condition is going to get progressively worse.

Every morning I am so stiff I can barely get out of bed. There are days I could just lay
there and watch TV all day. I make myself get up and join the real world. I too have a
lot of pain. I have fibromyalgia, osteoporosis, osteoarthritis, degenerative disc disease,
had back surgery. I also have scleroderma, lupus and Rheumatoid Arthritis.

I know what pain is, but I refuse to live the rest of my life like an invalid. You need to
push through the pain to make it better. Take one day at a time. Increase your excercise
slowly. YOU WILL FEEL BETTER FOR IT.

I am sorry if I seem harsh, I only want the quality of your life to improve, I know it can.
PLEASE TRY!

Robin
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


gonuts
Regular Member


Date Joined Jan 2008
Total Posts : 159
   Posted 9/2/2009 4:53 PM (GMT -7)   
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!!!! tongue 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 turn

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

Good luck Coach... Laura wink
Cervical spine surgery 2004, C-section 1986, Cholecystectomy 1999, Thoracic and Lumbar injury 2000. Anxiety/depression 2008. Fibromyalgia 2009, Thyroidectomy 2008. Degenerative disc disease. IBS. Asthma, Rheumitoid Arthritis, Sacroillitis, Scolylosis, disc bulge in L5/S1.possible ankylosing spondylitis. Meds: Lisinophil, xoponex, symbocort, pulmocort, troponal, vitamin 2000 D, Vitamin B complex, Hydrocodone, Tylonal Arthritis, Cymbalta.prednisone and Lyrica


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 9/2/2009 7:46 PM (GMT -7)   
Hi, Patrick!  I'm glad to see that you are going to give this a try.  I do know what you are talking about when you talk about pain.  Many times I feel like someone beat me with a baseball bat.  As one member said, they felt like they were beaten up with a bag full of bowling balls!  LOL  That's a pretty good description! 
 
But, if you have basically been hanging out in the recliner, even going to the doctor would cause you a lot of pain because you haven't been exercising for a while and your muscles aren't used to the activity.  But, if you start I think you will find that  you can do a little more each day.  Start out slowly.  Maybe just walk a few houses down and then back.  Yes, you will have pain because you are starting to use these muscles.  But, if you continue and expand your exercise as you progress, you will feel better, have a better outlook, and your pain will be less.
 
There are some good stretching exercises on the Fibro 101 thread...the first thread on the forum.  These really do help and they can be done sitting down!  I KNOW you will like that idea!   smilewinkgrin  
 
We are all rooting you on.  I bet you didn't realize you were going to have a worldwide cheerleading section rooting for you!  yeah    You are a lucky man!  turn
 
By the way, I loved your smiling face and Tigger is adorable!
 
Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Jhemi
Regular Member


Date Joined Jul 2009
Total Posts : 223
   Posted 9/2/2009 9:03 PM (GMT -7)   
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 Patrick
New Member


Date Joined Aug 2009
Total Posts : 13
   Posted 9/3/2009 12:35 PM (GMT -7)   
Hi Everyone!
I stretched and walked Tigger back and forth through the house until my legs and Tigger let me know we were done. I live in Scottsdale Arizona so walking outside even in the morning is still pretty hot. I lifted 5 lb. weights exercising my arms. I washed Tigger and myself all of which left me very fatigued, but with little pain afterwords though I had pain while doing all of it.

I have a lot of fatigue. I have heard of "Chronic Fatigue Syndrome." Is that something totally different or could it be the same as Fibromyalgia?

On a lighter note I would like to do something to "pay you back" for all your helpful advise. I am an artist with expertise in PhotoShop. It would help my morale if I could put a face to the names. What do you think Sherrine if everyone who wanted to email me a photo of them with their pets and I create a group photo with everyone's nickname on the photo? It could be set anywhere in the world we might want to go in our imagination- like we could all be sitting on the Spanish Steps in Rome! Does that sound like fun? Please let me know if it is okay and I will start another thread for it.

Love to all,

Coach Patrick

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 9/3/2009 1:11 PM (GMT -7)   
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.  smilewinkgrin
 
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
 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/3/2009 1:18 PM (GMT -7)   
Coach that is wonderful!!!!!!!!!!!!! I knew you could do it. Remember to start out slowly
and keep adding bit by bit. I bet Tigger was happy too! After excercise remember to
replenish your fluids, escpecially in the heat.

Chronic fatigue goes along with the fibromyalgia. I don't have a diagnosis of it, but I am
sure I fall into that category along with many of the fibromites on this forum.

I am keeping you in my prayers Coach. I been thinking of you since your initial post.
All of us want your quality of life to improve. Today you took a giant step in making that
happen.

Keep us posted!!!!!

Robin
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements

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