New to the diagnosis... but not to thepain

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realpain
Regular Member


Date Joined Nov 2008
Total Posts : 83
   Posted 11/24/2008 6:48 AM (GMT -7)   
Hello all,
 
My story starts 8 LONG years ago. I was dx with having hyperthroidism and during that time is when the pain had also started.  The doctors couldn't understand why I was having the symptoms that I was having... VERY high pulse, low blood pressure, extreme leg and arm pain and bad circulation.  I went to many differnent doctors and they all pretty much just made me think that the pain was in my head.  shakehead    After MONTHS of excruciating pain I just stopped going to the doctor for it and just adapted my life around the pain.  I don't stand for long periods of time (like 5 min's at a time is too much) I just learned what made the pain worse and try to avoid those things.  After I had a partial thyroidectamy I thought maybe some of my symptoms would go away... but nope, they are all still here.  I have times were the pain is not that bad and life is fine, just a mild irritation, but right now it is back and worse then EVER!!!!  I now have a new doctor and he tells me that he thinks I have fibromyalgia, because I have MANY of the symptoms, he said that he won't diagnose me until I see the reumatologist and he also sent me for a ton of blood work. Unfortunately I am unable to get in with the specialist until January 21st!!!  I am currently on .25mg of xanax for anxiouty, 10mg of propranolol for fast heart beat, 30mg (twice a day) of cymbalta for depression, anxioty, and help with pain, and now I am also on 50mg of Ultram for pain (which doesn't seem to touch the pain)  cry All I want is a way to control the pain, I have horrible headaches, joint pain, and muscle aches EVERYWHERE!!!! 

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 11/24/2008 7:03 AM (GMT -7)   
Hi Realpain and welcome. Sounds like your getting close to a dx. This is a great forum and I'm glad you found us. Read the fibro 101 thread, second one on first page, it contains a lot of great info including a list of symptoms. Many people are surprised at how many symptoms there is to fibro.
 
We use a lot of moist heat for pain in any form we can get. Read all you can, ask questions and we will be here to help you.
 
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


realpain
Regular Member


Date Joined Nov 2008
Total Posts : 83
   Posted 11/24/2008 7:24 AM (GMT -7)   
Thank you for your kind words, I need those right now!!!!  For 8 years I have felt like I was going crazy and everyone around me thought so too I think.  It is so hard to go to dr after dr and get no answers, thats why I just gave up and stopped going.  I went again last week only because this flare up has been the worst so far!!! I wake up every moring with the worst head ache in the owrld and it seems like NOTHING seems to help my pains!!!!  I take hot baths and prop my legs up and take my pain meds... but nothing helps!!!!  Is this what the rest of my life is going to be like!?!?!  How long do your flare ups last??? I know that I have leg and arm pain all the time, but it is barable most of the time, but when I get a flare up I can varely function... and they seem to last for MONTHS!!!!!  I am scared and confused right now and I have no idea where to turn, and that is why I came here.  I have read a lot about fibromyalgia since I was told that is probably what I have, but to me there is no good answers on how to relieve the pain!!!!  I am a mother of 3 that works a full time job and still holds up the home front, but there are so many days where I don't even want to get out of bed!!!!  The only time that I have relief is when I sleep... so I don't want to get up!!!!  The other problem is where do I turn??  Sometimes I think my family just beleives that this is all in my head because it has gone on for SO MANY YEARS, ya know???  Very confusing!!!! mad

springfling
Veteran Member


Date Joined Mar 2008
Total Posts : 519
   Posted 11/24/2008 8:04 AM (GMT -7)   
Hi & welcome!
 
I am glad you finally found a doctor who treats Fibromyalgia & seeing the Rheumatologist is the next step. Sorry you have to wait so long to see him!
 
Like Marlee said, I find that warm baths, showers help a bit. I use a heating pad sometimes & it seems to help relieve some of the pain. I also do some of the stretches talked about in the Fibro 101 thread. (2nd thread from top) By stretching some of the muscles that are painful, I've found that it does loosen me up and relaxes me.
 
I wish I could help you more. I didn't have any luck with Ultram either. Can you call your doc and tell her it isn't touching your pain? Maybe you can get something stronger to help you more while your waiting to see Rheumy.
 
As far as the Fibro flares. They can last anywhere from 1 day to 2 weeks. The really bad flares usually hit me and I'm down for a couple days to a week. I am never without pain, but my pain is bearable in between the flares.
 
My family still doesn't understand or act like they believe I have Fibro. I quit trying to get people to understand. It stressed me out so much that I gave up. Now I just focus on trying different things to help me feel better and I don't worry about the others around me or what they think!
 
I don't know where your headaches start, but I used to get them really bad all the time. My husband would massage the lower back of my head (indent where neck meets scalp) and it really helped by relaxing those muscles and lessening the pain. Maybe you could have someone try that, just not for too long or you will end up feeling sore and bruised.
 
Good luck and hope you get to feeling better.
Hugs!!   Margie

Never regret something that made you smile!

Fibromyalgia*Osteoarthritis*Sleep Apnea*Depression*Fatigue*Allergy/Sinus


realpain
Regular Member


Date Joined Nov 2008
Total Posts : 83
   Posted 11/24/2008 8:15 AM (GMT -7)   
Thank you Margie,
 
Helps me to know that it is not just me that is misunderstood!!!!  I thought once my symptoms had a name people would be more understanding, but they really aren't!!!!  I try my best to just deal with it on myown, but there are so many times that I just feel like screaming, because nothing helps the pain!!! 
 
As for my pain medication... the doctor told me (when he prescribed that med) that there really aren't very many med's out there thatw ill take away the pain, infact no med will comletely take it away, but the cymbalta will help take the edge of...only problem is it can take 4 weeks before it works!!!! 
 
You are right... my headaches start at the base of my skull then seem to creep its way up to the front!!!!  I have tried to have my fiancee rub it for me, but he never gets the right spot, adn then when he does, it just hurts more then helps.  I tired sleeping with less pillows and what not, but nothing seems to relieve the pain.  Lets just hope we find something soon!!!  
 
My flares seem to be stress induced majority of teh time and they seem to last for months... as for day to day life mild stress I can deal with and the pain is just annoying more then anything, I just learned that I cannot over do it... or I will pay for it later!!! : ) Living with this for eight years has MADE me learn to adapt my life around it for sure!!!!
 
Thank you again for taking the time to write... I hope that you are doing well!!!
 
 
HUGS....
 
 
 
 

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 11/24/2008 11:08 AM (GMT -7)   
Hi, Realpain, and welcome!  You have been given some good info.  I hope you do read the Fibro 101 thread.  It does have a lot of good information in there.  There is a link to Doctors Respond to New York Times Article.  Check that out and maybe print it out.  Learned doctors tell all about fibro and you will see that it is not all in your head!
 
I use ibuprofen and Tylenol for my pain and I also use malic acid/magnesium for pain and fatigue.  There is a link all about the malic acid in the Fibro 101 thread.  Read about it and see what you think.  They have helped me a lot but they don't work for everyone.  They are pretty inexpensive, at least where I get them, so they might be worth a shot.
 
You do need to start moving.  That's part of the reason you are getting so sore.  If you sit and lay too much you will be stiff as a board.  Yes, I know it hurts to move but you are not helping yourself one little bit.  The more you move, the less the pain will become so that you can move even more.  The stretching exercises in the Fibro 101 thread is a good start.  Walking is a wonderful exercises and it doesn't cost a cent!  I try to walk my dog every day for nearly a mile.  I couldn't do that when I started out.  I also have walking-on-place videos that I use, too. 
 
You do need to pace yourself to get things done.  You can't do them in the same time frame you used to before fibro.  For example, I'm having Thanksgiving at my house this year.  I started working on the house two weeks ago!  Today I wiped down the patio furniture and hosed off the lanai and trimmed up some plants in the back yard.  That's all I'll do today except cook dinner.  So, you can get things done...eventually!
 
You do need to relax and face fibro head on.  You are so stressed out about it so that just makes the pain worse and the anxiety worse, too.  The headache that you are describing I think is from anxiety and stress.  Do the muscles feel extremely tight from your neck, across the top of your head, and then to your forehead?  If so, this is anxiety and stress.  I had that yesterday and started massaging the back of my head from the base of my head to the middle of my head.  When I found a tender spot I would work on that more and the pain did finally go away. 
 
Read back posts, the Fibro 101 thread and ask questions.  We will help you get control of your life back.  I have had fibro for 21 years and have had a full and enjoyable life with it.  Once you get control of the pain and learn how to handle stress you will do just fine.  I'm so glad you joined us and we will help you.  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


realpain
Regular Member


Date Joined Nov 2008
Total Posts : 83
   Posted 11/24/2008 11:24 AM (GMT -7)   
Thank you for the inout Sherrine,
 
I may have misled you in some way because I am on the go a lot actually, just don't want to be most of the time.  I work 40 hours a week, and juggle three children, house work and dinners.  Life does not stop for me no matter what.  As for the headaches, I know that soem of it is due to stress (I have a lot going on right now) but nothing has helped them, I have rubbed my neck, I have taken tylenol and IB profin, pain killers, hat wash clothes, and nothing helps!!!!  I am hoping that once my med's kick in the pain with start to subside some.  I have dealt with the pains for 8 years now, and I can handle them on a day to day basis, I am just having a hard time with this flare up!!!  This one is the worst yet!!!!  It even hurts to drive... my leg just aches and when I go to step on the brake that littel movement alonemakes my knew pop.  I know that I am just complaining and I am sorry for that... like I said this flare up is the worst!!!! I will try all of everyones suggestions and hope they work!!!!  Thank you all for such a warm welcome!!! Take care ♥

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 11/24/2008 12:05 PM (GMT -7)   
I'm sorry!  That was my mistake.  I didn't read through all of the posting on the thread since I'm rushed for time.  But, it's good that you do keep moving.  The flares can be miserable and I have had some that have lasted months.  A lot of them seem to coincide with the weather and the barometric pressure. 
 
Do give the malic acid a try.  It has helped many members on this forum and it just might help you too.  I don't have to take as many pain relievers since I started them.
 
I hope you are feeling better 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


realpain
Regular Member


Date Joined Nov 2008
Total Posts : 83
   Posted 11/24/2008 12:38 PM (GMT -7)   
No worries... tongue
 
I just wanted you to better understand where I was coming from is all.  Thank you for your time, I will try out your suggestion!!!
 
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