New to Fibro - What to Expect?

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honeyprincess21
Regular Member


Date Joined Oct 2008
Total Posts : 99
   Posted 10/2/2008 12:09 PM (GMT -7)   
Hey all,
 
I have been going to the doctor for what seems like forever describing symptoms for which I have only been recently diagnosed (appx 1 mo ago) with Fibro. FINALLY! I'm not crazy! While I am SO relieved to finally have a diagnosis, I am NOT relieved to see that this isn't really a fixable type of illness. I already have Endometriosis which also is not something you can just treat and be okay with. My question is, do symptoms get worse with time? Is it a gradual worsening or is it sudden? I am so scared. I am CONSTANTLY in pain all over my body...it feels like it's right where the muscle or tendon or ligaments or whatever join with bone. It is the worst in my calves, my lower arms near my elbows, my back and oh god right at the base of the buttocks. I have NO energy ever...I'm only 28 years old and I feel like an old lady. I can't remember the last time I saw any of my friends... I feel like I can't concentrate on anything, I forget things that JUST happened, my temperature is all over the place and my god, the mood swings are insane. PLEASE tell me it doesn't get worse then this. I'm just wondering if anyone can tell me how this disease progresses and if anyone else out there has Endometriosis and Fibro. If so, how do you survive? Because the pain and nausea from the Endo plus everything from the Fibro is really enough to make me wanna die. I feel so worn out all the time cry

QTKaren
Veteran Member


Date Joined Apr 2008
Total Posts : 605
   Posted 10/2/2008 1:34 PM (GMT -7)   
Hi Honeyprincess and welcome to the forum.
My name is Karen and I am 48 yrs old.  I have had endo since I was a kid and dx'd at 26.  At that time I had one child and wanted to someday marry and have more and the jerk doc I had told me to deal with the pain or get a hysterectomy.  I dealt with the pain.  I was dx'd with fibro about 6 months or so ago,it seems like years now.  So with the fibro I was no stranger to chronic pain years before the fibro.  I would have a "cleanout" every 9-12 months and for 10 yrs this went on while trying to concieve with my ex.  Finally in 1996 I had the hysterectomy with promises that take out the source of blood and the pain would stop,not so.  I have had about 5 cleanout surgeries since then and am due for another.  It is everywhere in my pelvic region including in my bowel and I need a bowel re-section on the next surgery.  Problem is I am having trouble finding a great surgeon to do the surgery.  I went to the University of Washington and saw the top OBGYN out there and he said nope won't have you onmy table because your too big of a risk for crashing.  The last surgery I had was in 2005 and I ended up in the ICU on a vent for 5 days as the doc spent 5 hours cleaning me out in a hip to hip cut on a tilt able and when they took out my breathing tube my airway collapsed so instead of waking up thinking I was going home from a day surgery I was on lift support and now noone wants to take that chance cept I have to have this done or it will spread to my lungs.  Found out that even after the hysto that little minut bits of the disease can remain and each month they swell and burst and so on and even if they completely wipe out your estrogen that this disease makes its own estrogen and in fact feeds itself.
 
The fibro makes my endo pain alot worse,heck all my chronic pain is enhanced from the fibro(broke my back in 2000 so back pain too and had a stroke about a year ago and stroke pain in my shoulder). Some days are worse then others and of course there are the flares mostly when I overdo and I am well known for that.  It's like you have a day where ya feel pretty good and try to catch up an everything cause you dont know how long it will last.  I know it sounds funny but for the most part I am used to the pain.  I am on narcotics and that helps but there is always constant pain from one thing or another.  The thing is you have to take it one day at a time and you really appreciate the simple things in life more,things you took for granted before.  You can still have a good life its all about deciding whether you are going to let this take everything from you or enjoy the things you still can do.  I know there are suppliments that help some ppl and for others like me I had to be on stronger so having a good understanding doctor is a must.
 
Stress is a huge factor with fibro and endo.  Learning to relax and take "me" time is a must.   You could be in a long flare right now(not sure what happened on my color but the font can go wierd here lol) My heating pad is one of my best buds and I bought a super long one that I can wrap around huge areas and they are cheap.  I really hope you start feeling better soon,beleive me I have vented on here tons of times and it helps to just say what you are feeling.  There have been many times I felt like I couldnt take one more minute of this pain but you do and it does get better.  I went on Lyrica around the time that I was dx'd and it has been my saving grace.  It takes care of any burning pain and much of the joint pain.  It can take a bit to get used to it but most do so if you try it hang in there.  And dont worry about the weight gain thing that is so talked about with this drug.  It can make you have the munchies but keep low cal low fat snacks on hand and it isnt a problem and even that seems to go away after awhile.  I have pain coming at me from all directions and I do enjoy my life still.  I cherish every time I can see and play with my grandkids,family is important so try and spend time with them.  You can e-mail me anytime if you want.  I have been through the wringer and do understand.  Take care Honey.
 
Soft Hug's,
Karen
Karen
 
Mom of one gramma to 4 lover to One
 
Fibromyalgia,IBS,Stroke x2,endometriosis,Diabetes type 2,neuropathic pain,nerve damage due to tailbone removel,nerve damage due to fractured back,deppresion,high blood pressure,severe nausea,atrophy,chronic pain,nerve damage due to botched bladder surgery,torn hip joint,hypoglycymic
 
Norco(double strength vicodin) 80 to 100 mg @ day
Ms Contin(morphine) 45 mg @ day,Lyrica 600mg @ day
 
 
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 10/2/2008 1:46 PM (GMT -7)   
Hi, Honeyprincess, and welcome to the fibromyalgia forum!  You could be going through a flare right now.  Fibro, when in a flare, is worse than usual.  Also, the consensus of opinion on this board is that it does get a little worse over time.  Now that I have delivered the bad news, here is the great news!  You have come to a wonderful place.  We have great people on this forum that have wonderful ideas and suggestions to help you live a full and enjoyable life.  I've had fibro for 21 years and have still enjoyed my life immensely.
 
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links in there to great info about fibromyalgia.  You will learn a lot.  Also, read back posts.  There is a world of information in them.
 
Now for the pain.  I use ibuprofen (with food) and Tylenol for my pain and malic acid/magnesium supplements for pain and fatigue.  These supplements have helped me a lot.  There is a link all about them in the Fibro 101 thread along with links to how it works in the body and a double blind study that was done using the supplements.  They don't work for everyone, but, they have helped many members.
 
Hot showers and moist heat are wonderful for the pain.  Get a rice bag or a Bed Buddy that you can heat in the microwave.  They give off moist heat.  Gentle stretching exercises are a great help and there is a link in the Fibro 101 thread listing how to do these.  They are done sitting down.  Be sure to keep moving, too.  If you sit or lay too long, you will be stiff as a board.  I go for a walk every day and I feel so much better doing it.  I also have a walking-in-place video that I use when the weather isn't cooperating.  Also, light massages seem to help some and others enjoy water aerobics. 
 
I'm sure others will be on soon with other suggestions.  Meanwhile read and post questions.  We are here to help you and we really do care.  I'm so glad you joined 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


BumBum81
Regular Member


Date Joined Sep 2008
Total Posts : 43
   Posted 10/2/2008 3:41 PM (GMT -7)   
Hi!! Boy, can I relate to what you are feeling!! I'm 27 and may have finally received my diagnosis, depending on a few more test results. My boyfriend calls me an old lady all the time since this has started. It sucks so bad. We used to go out on nature walks and for trips around the city and ever since my leg started hurting we just haven't been able to do anything. I'm constantly tired and have made this summer a major bummer for him. I've even missed some major concerts... I'm a big heavy metal fan and I missed Judas Priest cry   But hopefully I'll be diagnosed and be able to get on medication and on the right track to feeling better, and I hope you will too!!
"Dwell not on the past. Use it to illustrate a point, then leave it behind. Nothing really matters except what you do now, in this instant of time. From this moment onward you can be an entirely different person, filled with love and understanding, ready with an outstretched hand, uplifted and positive in every thought and deed." Eileen Caddy
 
Diagnosed: Anxiety/Panic Attacks, Depression
Had gallbladder removed 10/2005
Quit smoking 10/2005 YAY!!
Medications: Klonopin 1.5mg daily, Celexa 30mg daily, Singulair, Rhinocort, Multi-Vitamin and Calcium


jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 10/2/2008 3:49 PM (GMT -7)   
Hi Honeyprincess and welcome to our fibro-family!
First, the good news! There are numerous meds and treatments available for fibro's symtoms that can make this possibly a very livable condition with only minor inconvenience. The bad news is that no single med or treatment works the same for everyone and it may take some time to find what works the best for you. Also, your title says it all.....What to expect! The words and advice from Sherrine and Karen are a good place to start. Then, Fibro 101, as Sherrine suggests. Now, you must understand that what you expect and what you get are almost always 2 different animals. Monthly, weekly, even hourly, those two will almost never get along. You learn to expect the unexpected.....plan for the worst and hope for the best. That is why finding the proper meds, supplements and/or treatments is so important for you because, at least for the present, fibro is a lifetime buddy whether you want it or not. There are so many variances in symtoms and degress of pain and discomfort that they really are as numerous as there are sufferers. But take heart......it's an extremely rare case that someone can't find SOMETHING out there to ease their symptoms.....at least for a while. So even if you feel so bad like the grim reaper himself is standing right outside your door, there is always hope. Again, it may just take time, trial and error to find your relief so hang in there and keep looking for it. I'm 99.9% sure that it's out there somewhere!

Here's hoping that you can find your comfort zone real soon!

Gentlest of hugs,
John
*****************
John (53)
*****************
Dx'd June 2008 with Fibromyalgia & CFS  possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)
 
*****************
Several meds too numerous to list or remember!


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 10/2/2008 7:46 PM (GMT -7)   
Hi Honeyprincess and welcome to our family. Fibro is different for everyone. I have wide spread pain and soreness but I can handle it most days with 4000 mg tylenol. I use a TENS unit during the worst times or flares. Fatigue is the demon I can't get rid of. Yes, it has gotten worse for me.
 
Don't give up hope. This isn't a death sentence and we never know when they will come up with meds to control it better.
 
Positive attitude helps and I work on that daily. It's a work in progress smilewinkgrin Some days I have to search really hard for it.
 
I figure the one thing we do have control over is the way we think, so might as well think positive thoughts.
 
This is a great forum and I'm glad you found it.
 
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


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 10/2/2008 10:33 PM (GMT -7)   
Hi Honeyprincess...cute name!

I'm so glad you have joined us on our little island in a sea of pain. Yes, the pain will come and go in waves and there's no way to tell how long those waves are. The literature on fibro says it's not progressive but personally I believe none of those authors HAVE fibro. For me it seems to get worse but also I build a tolerance to pain meds.

You are so very young but you can make it. My 'extra' daughter was diagnosed at 18. She now has a 2 year old boy who's the delight of our lives and she's getting married in about 6 weeks. She has to work with the pain but she has a wonderful doctor which is essential.

Please try and relax, learn, ask questions and then comb your hair, put on some makeup, look in the mirror and see what a lovely person is looking back at you! Life is what we make of it. Sure we have this darn pain to manage but as said above, it's not a death sentence, it may just feel like it at times. Decide to live and love your life!

Chutzie
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)

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