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Posted 2/3/2009 3:49 PM (GMT 0)
I have been having one of those %$%^@* headaches for DAYS now... I wake up with them and go to bed with them and nothing seems to help.  I have learned that this paticular headache is the first sign of a flare.  After that first day everything goes crazy!!!!  I am now on my 9th day of a horrible headache and was doing some research on ways to relieve pain.  I stumbled upon something that made sense, but want others input.

 

You see about 7 years ago (1 1/2 into fibro) I had finally made the decision that what ever was bothering me I was going to fix (I was only recently diagnost).  I started running 2 miles a day with a friend of mine... ok, at first we walked A LOT of those 2 miles, but in no time we got up to the 2 miles a day.  I STILL had the pain though.  We decided that maybe we should start going to the gym to build up and tone some muscle.  During that time we were very dedicated and we started taking protein and creatine to help with building the muscle.  I remember telling my friend that for the first time in a 1 1/2 I felt better, I could sleep again, and my legs didn't ache anymore... I was a different person.  I just figured it was from the work outs.  Since that time I have forced myself to do the work outs several different times and have lost a ton of weigh... gained it back, and so on.  During those times never did the pain go away, the only difference was that I didn't take the creatine. 

 

OK... now to the point... I "accidentally" found some info on creatine and Fibromites, so then I decided to google it to research it further.  Alot of things that I read stated that people with Fibromyalgia do not create enough creatine in their bodies, which causes muscle issues and that the use of creatine has helped many.  I am not a doctor nor am I suggesting anyone try this, I am just thinking that maybe just maybe THAT is why I saw the difference.  Only problem is that when you take creatine you HAVE to work out, or you will get FAT and it really doesn't do what it needs to do if you don't.  I guess I just need to fight through the pain for a bit and MAKE myself get back into a work out schedule to see what happens. 

 

I just wanted to know if any of YOU have experienced this or even heard of such a thing.  Just curious... like I said... I am not suggesting that anyone try it!!! : )

Posted 2/3/2009 4:00 PM (GMT 0)
I am sure you would have many responses but there was nothing in the subject portion of your blog. I too started working out heavily months ago. Now it is backfiring and I get extreme body aches, weakness, and fatigue afterwards. The exercise helped and now it's making symptoms worse. I must be missing something important in my diet. Good luck on finding a solution.
Posted 2/3/2009 4:09 PM (GMT 0)
I saw that and I changed it... thanks for letting me know though!!! : )

 

My problem with working out is when I have a flare I just don't want to do ANYTHING and then I get back in the rut that I was in before I started working out.  As for the day to day pain, I just do my best to fight through it during workouts... just have to get the mind set I guess.  I know that there is no cure and I will probablyhave pain for the rest of my life, but I just curious if others have experienced this.

Posted 2/3/2009 4:19 PM (GMT 0)
Hi, Realpain!  You did make me curious so I checked it out.  I went to my two favorite authoratative sites...the National Institute of Health and the Mayo Clinic.  Both sites give the same information so I'm only posting the link to the National Institute of Health.  It seems that this is more of a muscle builder....from what I am reading.  Here is the link all about creatine.  Please read the whole post...especially the Safety section that includes side affects and interactions with medication and herbs.

 

http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-creatine.html

 

Sherrine

Posted 2/3/2009 4:26 PM (GMT 0)
Sherrine,

 

I will look into it further through the site you provided, I just wanted to respond and say thank you for the input.  I know that creatine is a muscle builder, our bodies actually produce creatine as well.  And on some sites I saw that people with Fibromyalgia don't seem to produce as much creatine then most people.  I just know that they have no "reason" why people have Fibromyalgia, nor do they have a drug that can TRULEY help us take the pain away.  I would never say, "hey try this", especially without speaking with your Dr. first.  I actual had a reaction to it myself, but it was mild, it did bother me enough to stop taking it though.   ANYWHO... thank you for the info, that is exactly what I was looking for, more info from others.  have a great day!

Posted 2/3/2009 6:42 PM (GMT 0)
Hey...
I had posted on the Chronic Fat section regarding my issue with exercise and I was sent the following:

'Exercise intolerance has been one of my on-going symptoms. In my case the CFS type symptoms are due to Lyme. Most descriptions of CFS have "post exertional malaise" lasting a day or more as one of the basic symptoms. It's been very difficult cause I once was very active. I've only ever found one article that proposes a mechanism for the exercise intolerance. The article calls it "exercise one day, sick for three". I felt like I had flu (without the fever) for a day and a half. Kinda technical but an interesting read:

http://www.prohealth.com/library/showarticle.cfm?id=7938&t=CFIDS_FM

I'm being treated for Lyme and there a effects from the treatment, but all I can do right now is a 10 min daily walk on flat ground.


I thought I'd check out the article...
Tracy
Posted 2/3/2009 6:54 PM (GMT 0)
With fibromyalgia you do need to keep moving.  Many think that fibromyalgia and chronic fatigue could be the same thing.  Anyway, some can exercise more than others.  It's good to keep moving and doing as much as possible.  Pacing yourself also helps a lot.  I have a large home and do all of my housework but I pace myself.  This is a form of exercise, too.  But, if I headed to a gym and worked out, I'd probably end up in the hospital.

 

Everyone has different tolerances to pain and fatigue.  What one can do perhaps another can't.  Your body will let you know what you can and cannot do.  But, try to do the most movement that is possible without paying a big price in pain.  This will help to keep you flexible, walking, and enjoying your life. 

 

As to the link you put in the post, myfairlady, the bottom of the link has this disclaimer.  I think I'd take the info with a grain of salt.  I go for scientific proof every time.

 

Note: This information has not been evaluated by the FDA. It is for general informational purposes only and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare regimen or plan without researching and discussing it with your professional healthcare team.

 

Sherrine

Posted 2/3/2009 7:45 PM (GMT 0)
Sherrine,

 

I agree with you totally, with every person things are different.  If you are over weight when diagnost or if you are thin, I think it makes a difference, if you have other underlying problems I believe that too makes a difference, if you are a health nut or a food junkie it can make a difference, and as you said everyone has different pain tolerances.  All I know is when you feel that "fibro" pain it is like no other... because nothing takes it away!!! Atleast before fibro when I would get a heach ache all I had to do was take some tylenol and call it good, now I take heavy pain meds and can not get rid of it.  Like I said earlier... I am now on my 9th day of a head ache!!!   

 

I have read alot of posts from you and you seem very upbeat and a positive thinking... did you ever go through the part when you were angry at this disorder???  I have had that problem lately and I am doing my best to see the good in things still... it is just very hard sometimes!!!!  As always thank you for sharing and always happy to hear from you!

Posted 2/3/2009 8:40 PM (GMT 0)
Hi, Rach!  Yes, I did have my sadness and anger with fibro.  When it hit me I was in extreme pain.  I was just watching television and my feet started to hurt, then my ankles, then knees, etc.  When it got to my elbows, it was like I banged my "funny bone" and I had that extreme pain and like electrical shocks going down into both arms and hands and it stayed that way for over two weeks without stopping.  I was crying all of the time.  I couldn't sleep, work, rest, etc.  I had three children ages 12, 9, and 8 years old.  I couldn't believe that this could have happened to me and I was really ticked about it.  The more I thought about the pain, the worse I felt.  My doctor knew it was fibromyalgia but only put me on aspirin.  My ears were ringing so badly from that that he switched me to ibuprofen and I've been taking that ever since. 

 

I just realized that my frustration and anger made me feel worse, it didn't help the fibro one tiny bit, and no one wanted to be around me.  Even the dog stayed away!  LOL  I also realized that it was fear feeding into this, too.  You know, the fear of how my future would be.  Then, when reading the Bible, I came across the scripture I have in my signature.  That helped me so much...realizing God gave me a spirit of power and of love and of a sound mind.  I figured with that for me, I could definitely handle anything fibro dished out.

 

I decided to face fibro head on and start controlling it instead of it controlling me.  I looked at my situation and realized that I not only had a loving family, a roof over my head, and food on my table, I also had sooo many things to be thankful for.  I was better off than 98% of the people on the face of this earth AND I didn't have an illness that would kill me.  I could still live my life pretty much the way I wanted to but I would have to learn how to work around the fibro so that's what I've done for 22 years.  I also knew I would always have pain.  I think that some people try to be pain-free.  That would be nice but it rarely happens with fibro so I accepted the illness and worked from that point on.  I don't expect to be pain-free.  When having a good day, I totally enjoy it and I DO NOT overdo.  I carry on the way I usually do. 

 

Rach, I've done more than I ever imagined I could ever do!  I have several health issues but am too stubborn to allow them to dictate my life.  So, I live life as if I didn't have these things.  With fibro and some of the other problems I have, I do have to plan ahead.  Once on a trip I decided I wanted to parasail.  It always looked neat to me but then I would get that nagging fear about if it would cause pain...especially when landing.  But, I remembered the scripture and cast my fate to the wind, no pun intended, and went for it.  It was magnificent and my fibro didn't stop me from that memory.

 

So, we here on this forum are here to help one another.  We have little tricks that have helped us get around problems so we can live our lives the way WE want to live them.  Keep a positive attitude.  Be thankful for all that you CAN do and don't think about what you have difficulty doing.  Focus on your interests, your family, your hobbies, and the pain fades some in the background.  Try to keep your pain under control.  You need to work closely with your doctor.  I use ibuprofen with food, Tylenol, and malic acid/magnesium supplements.  These all help me keep my pain under control...not pain free.  Keep a good sense of humor...especially when it comes to the fibro fog.  All of these things will help.  You are a strong person.  It's amazing what the human spirit is capable of doing and you can do it if you really put your mind to it.  Pace yourself but yet get busy doing something you enjoy doing or something that makes you feel good.  When I start doing something I don't like to do, I just remember how good I'll feel when I get it accomplished!  That helps keep me happy.

 

I hope this has given you some good ideas to help you get out of that funk.  Once you do, you will feel better, have less stress, and most likely have less pain.  Enjoy your life.  You only have one shot on this earth so make the best of it.  There is beauty all around you so enjoy it.

 

Sherrine

Posted 2/3/2009 8:48 PM (GMT 0)
Rach, I don't know if you ever saw this article from the Fibromyalgia Symptoms site.  This is very good.  It does mention that a low level of magnesium could possibly cause some of the migraines that fibromites get.  I take extra magnesium with those supplements that I take and I don't get headaches.  You should talk to your doctor if you are having this much difficulty with the headaches.

 

Here is the link.

http://www.fibromyalgia-symptoms.org/fibromyalgia_chronic_headaches.html

 

 

Sherrine

Posted 2/3/2009 8:58 PM (GMT 0)
Hey Tracy - I'm on this forum a lot ... ok mostly. The link on exercise intolerance was mine. For those who probably didn't see the topic in the Chronic Fatigue forum, there is a history here of tick bite. The Lyme connection needs to be investigated. I posted a little Lyme info in the CFS forum

The link I posted isn't meant as "proof" of where your exercise intolerance is coming from or that it's the cause of fibro. It's just info for your consideration. And the only thing I've ever found about the possible causes of exersise intolerance.
Posted 2/3/2009 10:18 PM (GMT 0)
Here is a link to a study done by the Arthritis Foundation on exercise intolerance in fibromyalgia patients.

 

http://www.arthritis.org/exercise-education-fibro.php

 

Here is a link entitled "Reduced tolerance of exercise in fibromyalgia may be a consequence of impaired microcirculation initiated by deficient action of nitric oxide.  This is from the National Institute of Health.  So here is another possible cause of exercise intolerance. 

 

http://www.ncbi.nlm.nih.gov/pubmed/16412581

 

Exercise intolerance is a symptom of fibromyalgia and also Lyme, MS, Chronic Fatigue Syndrome, and Rheumatoid Arthritis.  It could be a symptom of other illnesses, too, but these are the only ones I checked. 

 

Rach is under a doctor's care.  In another post she stated that it took 8 years for her diagnosis so I'm sure her doctor ran all of the tests needed to rule out Lyme and other illnesses.  I know my doctor was well aware of Lyme when I was diagnosed and that was back in 1987!  So, I'm sure her doctor did too.

 

I do send newbies to the Fibro 101 thread.  There is a link called What Else Could It Be.  I put that link in there just in case someone is self-diagnosing.  It is extremely important to go through the testing to rule out these other illnesses.  We talk about that all of the time.  We are also fortunate to have a Lyme forum on HealingWell so that if someone thinks this is what is going on, they can get help there.

 

Sherrine

Posted 2/3/2009 10:55 PM (GMT 0)
Sherrine,

 

I don't have the time to write a lot I just got home from work andhave the kids and family to tend to. I justwanted to let you know thatI read yourpost and I want to say thank you!!!! I will elaborate on it more tomorrow though... I had a long hard day!!!!  You helped though, your post brought back some of the fight in me!!! : )

 

As far as me being tested for those things in yourother post... YES I have been MANY times...  more then I would have liked to have been!!! 

 

As far as my headaches, I have a lot of stress going on right now and it brought on a flare and teh Dr. pretty much told me that there isn't much he can do to take it away, just have to ride out the storm!!! 

 

Thank you AGAIN I needed someone right now, that has dealt with this, to help me get my spirit back!!! It has been a LONG HARD ROAD, and honestly up until about a month after I was diagnost I DID have that positive attitude,I just think I am going through my "acceptance period".

 

Well have a wonderful evening, I will touch base with you tomorrow!!! 

Posted 2/4/2009 12:44 AM (GMT 0)
Adjusting to a chronic illness is tough. I think it's harder in the beginning or when your symptoms take a sudden downturn. When you are searching for a diagnosis, you have hope that someone will be able to fix you. That thought helps you keep going. Once you get the fibro diagnosis, you slowly realize that "this is it". You worry that you may never feel much better than you do right now. Then maybe you start to feel even worse and now you have to start all over. It takes time to adjust and re-adjust. You can't put a timer on it, some people take longer than others. Just when you think you've adjusted, everything changes.

It may take a while but you'll get your spirit back.
Posted 2/4/2009 12:01 PM (GMT 0)
Sherrine and Dagger... thank you!!  

 

You both took the words right out of my mouth... that is exactly how I feel right now!  I use to hope and hope for them to find what is wrong so that I could finally move forward, then once I was diagnost and it actually sunk in... the water works began.  My life has officially changed and it is time to adapt my life (permanently) to this disorder!!!!  I know that I am strong enough to do this... I do, the only thing is I am having a really hard time adjusting right now is all.

 

Like I have said in previous posts... I have dealt with this disorder UNdiagnost  for over 8 years, and I learned to keep it to myself and just adapt my life around the pain, so I know that I can do it again.  You know... my fiancee and I have been together for 3 years now and up until probably 4-6 months ago he had no idea about what I deal with every day.  People always treated me like I was crazy and nothing was wrong with me so I learned to just adapt life around my pain... I avoided all the things that would make me hurt and when I DID hurt I would just tell them I must have the flu or something.  The only reason why I went back to the doctor this time was that my pain got to be too much!!! Getting dressed is even painful to me at this point. 

 

I realize that I am just going through another lovely faze of this disorder and I will learn to get past it... I am just thankful that I found "this family" to help me through it.  This forum has been my crutch the past few days and I just want to thank you all for being supportive!!! 

 

Posted 2/4/2009 3:28 PM (GMT 0)

I am having a hard time figuring out how we got from week long miserable headaches, to muscle building supplements that are controversial. I do have a comment on the headaches: I started having the occasional headache right after my hysterectomy in 2000. Although my doctor said they removed only 1 ovary so I wouldn't need supplemental estrogen (to avoid being thrown into immediate, menopause). Then, when I went to my GP and she drew blood cause I ws having horrible night sweats, headaches, and was down right miserable, she announced "well you definitely are in menopause." She prescribed a gel that you rub on your belly or thighs, twice a day and I walked around feeling quite a bit better. Also, headaches mostly gone. Therefore, I say, that's hormonal. My body attacked my thyroid, reducing the thyroid hormone available to my body to nil and the end result was a goiter, and Thyroid supplements for life. That is also hormonal. about this time, I got hit in the neck and back by a telephone truck. I needed pain relievers just to walk, talk whatever. Then the Headaches really took hold. I had headaches lasting 3-4 days. I was trying to manage with Advil liquid gels, or Advil Migraine, but can only use NSAIDS up to three days before my stomach starts to burn. Then the doc gave me some Acetominophen, caffeine, and mild sedative med that did nothing. Then a friend said "try Fiorcet" which is a mild phenobarbutal concoction. It worked but when it's effects wore off (5-6 hours), back came the headache. By this time, I was desperate. The doc then gave me a nasal spray made up of lidocaine, that you tilt your head back , or lie with head hanging off the edge of the bed. I had a great laugh at that. But, not for long, b/c it worked. The lidocaine, numbed the nerves responsible for the headache. At that time I realised some of the headache problems were due to sinus infection b/c I took a heavy duty antibiotic, and had no more headaches, until I flew on an airplane. It was the most painfull experience I've ever had. The pain in my sinus went on for weeks. Nothing worked.

Then the doc prescribed zomig. I now use zomig (1/2 a pill) and lie down for an hour and presto, headaches gone. If it was a particularly bad one, I take the other half of the pill. That's my story. Zomig works.  

Posted 2/5/2009 5:49 AM (GMT 0)
I guess I just wanted to add that while a positive attitude is important (for so many things in life!), it's okay to not always be "up" for the fight, especially during the adjustment period that I think is natural for so many people following a diagnosis. Also, I believe that some of the drugs we take do also have an impact on our moods, feelings, thought processes, etc.

I heard a quote today: you have to feel it to heal it. Don't deny your feelings: acknowledge on your bad days that you are angry, or depressed, or resentful. It will help your emotional well being!
Posted 2/5/2009 6:05 AM (GMT 0)
I have both fibro and chronic fatigue. I swim a couple of hours per day everyday and I find I need to eat meat to be successful at eat. Beef has creatine in it so it may be why I need to have it a few times per week. I usually feel great on the mornings following a steak dinner $44 oz.).

I do not take the supplements and really am not interested in ingesting creatine by pill. I like the meat better.

Thanks, Donnaeil
Posted 2/5/2009 2:44 PM (GMT 0)
I normally try to reply when I get a response, but I got to spend yesterday in the ER and didn't feel up to getting on the computer once I got home, so... as for the subject matter... I was already laughing because my post was about the creatine thing really, but it has been nice to get some of my emotions out anyways... so thank you!!!  As for the headaches I already know that they are due to my muscle issues in my neck.  I have learned that when I am getting a flare I start with the headache first then everything else tends to follow in a downward spiral!!!  Yes I still have the headache... but it is not quite so bad today!!! 

 

Thank you for pointing out that it is "normal" to feel the feelinga that I am having right now... it does help TON!!!  Liek I have said... I think it is just now sinking in!!! At first I was kind of happy to have a diagnosis, but now I realize what that diagnosis intales!!! I know that it is not a death sentence and that I can atleast still l ive a long happy life with this disorder... it is just hard adjusting to it is all.  I get jealous of the mean angry people around me that take their bodies for granted though!!! I look around and hear everyone complain about this and that, and create unneeded drama in theirs and others lives and I just think... I wasn't like that so why am I being punished???  Then I think you know maybe God gave me this for a reason, maybe I am suppose to help others around me appreciate their lives more and quit taking their daily activities for granted, and just enjoy the life that you are given!!!! 

 

Well I have to get back to the grind stone... life does not stop for me ever!!! Have a great day everyone and thank you all for your kind words!!!

Posted 2/5/2009 2:47 PM (GMT 0)
I forgot to respond to the one person that wrote back about the actual subject at hand, I am sorry!!!!

 

I too enjoy the meat WAY more then that nasty powder!!!  And I have ALWAYS craved meat more thenanything else.  I actually told my fiancee once that maybe my iron is low or something because I crave meet like most people crave chocolate!!!!  You may be on to something there!!! : )  Thank you for your input... I just wanted to throw that out there to see if anyone has ever experienced that as well, or if it was just a coincidence!!!

 

Have a great day all!!!  tongue

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