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lost in philly
Regular Member


Date Joined Jan 2009
Total Posts : 243
   Posted 2/23/2009 8:49 AM (GMT -7)   
I am hoping that someone can make sense of what I have been going through, b/c after shelling out thousands of $$$ to doctors and going through hundreds of tests...of course they cant figure it out.
I have been dx with fibro and endometriosis for symptoms that came on severely in June 2007 and havent let up since. I have seen a rheumatologist and recently a neurologist. Ive had my battery of blood tests and MRIs--all neg for lupus, lyme and ms. However, my symptoms all seem to be progressing, my pain is very severe (I'm on morphine), I am dizzy and have difficulty walking (began before pain meds). I do have all the classic fibro symptoms--confusion, cold intolerance, muscle cramps, fatigue etc. Yet it feels like my doctors are missing something...
I have done alot of reading and maybe what I have read has misled me (?) but it seems as if my symptoms are not entirely consistent with fibromyalgia. Does anyone else have or know someone who has constant, severe levels of pain? I have never read of a "flare" being over a year?? What do you do when your tests keep coming back negative but your body keeps getting worse??

Thank you for ANY advice/ help!

lost in philly
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Fibro, Endo, Migraines, Asthma, CFS

Topimax, Fentenyl Patch, Effexor, Crestor, Resoril, Loestrin

B6, B12, Magnesium, Melatonin, Omega3


patsie
Regular Member


Date Joined Dec 2008
Total Posts : 478
   Posted 2/23/2009 9:03 AM (GMT -7)   
Hi Philly,

Well it sounds like you are really suffering and for that I am so sorry. I have fibro and am not classic at all. It is such a variable sneaky disorder. No two of us are just alike but have the common denominator of a pain syndrome that moves all around our bodies and especially affects the muscular and neurological systems.

There is a world of information on this forum and perhaps members will help you understand more. They have really helped me and I have had this just over a year.

Ask specific questions and help will follow!!!!

Welcome, Patsie

vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 2/23/2009 9:16 AM (GMT -7)   

hi and welcome!  Fibro is a sly little devil and it is difficult when it rears its ugly head to imagine all those symptoms are 'just a flare'.  I have gone years with 'white noise' pain and right now I have been in a flare for almost 7 months.  I too have had every test known to man.  I have pain every single day and it moves from one part of my body to the other.  Burning, gnawing, stinging, stabbing...you name it.  Also tingling in my legs with a numbness sensation that I never ever had before in a flare.  Blurry vision..never had that before either.

So I guess my answer is yes...I have had the pain worsen even after a battery of expensive tests also.  And have had a new symptom pop up out of nowhere. 

There are some excellent moderators and resources on this forum that can maybe articulate better than I can...The Fog!

hope you feel better

donna


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium


patsie
Regular Member


Date Joined Dec 2008
Total Posts : 478
   Posted 2/23/2009 9:24 AM (GMT -7)   
Hi Donna,

I just read your reply and picked right up on the tingling and numbness in your legs. My calves actually fasciculate and you can see them ripple along. When this first started it was just annoying. Now they lead to muscle fatigue. Well of course they would with a constant firing of the muscles. Do you have something like this or just sensations.

Just thought I'd jump in here and ask your opinion. My neurologist says it is not fibro but rather a benign condition. Of course I have now learned he just gives lip service on fibro. He's gone.

Patsie

vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 2/23/2009 9:37 AM (GMT -7)   

Hi Patsie.  This whole nightmarish flare began with the crawling/tingling numbness sensation in my legs.  I was on a grand jury and after sitting for 10 hours I stood up and there it was.  I went running to my rhuemy and he did not seem that concerned with it...gave me lexapro for anxiety and valium for the leg thing, as I had been dx'd with RLS years ago but it never acted like this...24/7.  Anway, mine seems like it might be in the skin because if I don't have any clothing against it I don't feel it as much.  My calves feel tight, like the skin is contracting around the muscle.  I can't really explain it.  I can't wear any clothing against my legs that have a texture or it really kicks in.  My legs aren't really numb...it just feels that way.  I also get 'shivers' or goosebumps' on them...really I get these all over my body.  I honeslty don't know what the heck it is...skin sensitivity?  I don't know.  I feel for you...it is really disturbing.

hugs

donna


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium


Binki
Regular Member


Date Joined Jan 2009
Total Posts : 386
   Posted 2/23/2009 11:23 AM (GMT -7)   
:-) Welcome Lost in Philly,

Sorry to hear your in bad pain right now. My pain varies so much from day to day I can get so frustrated. It took 2 1/2 yrs of X-rays, MRI's, blood tests (up the wahzoo) and even ultrasounds to finally give me the Fibro dx. The only other thing that any doc could see on my MRI's was I have osteoarthritis in my lower back and 3 bulging discs in my neck.

FM has so many ways to disrupt our lives, but we are a lot stronger than it thinks. Just think of all the strength you had to get the answer you need. I know that taking all the those tests and going to each doc appt. is stressful and time consuming.

I have lots of sensitives, like, heat, cold, noise, touch.....stress is not my friend either, it can make things worse.

Hang in there hun,

We are here for ya,

Hugs,
Lori  
 
Dx Fibro 1/2008, gastritis
 
 


pattipanda
Veteran Member


Date Joined Jan 2009
Total Posts : 1014
   Posted 2/23/2009 1:31 PM (GMT -7)   

Aww Philly, I wish I had some answers for you, but sadly I don't.  I think we're all a little different when it comes to Fibro and pain.  I have constant pain in my hands, feet, ankels, lower back and hips.  Some days its a lot worse than others.  I think a lot of it depends on our doctors too.  I don't know what meds you're on but finding the right meds seems to really be hard and can really make all of the difference.

I agree with everyone that mentioned that the more stressed out you are the worse the pain can be and it sounds like, your running here there and everywhere to be tested might be causing your stress, not to mention the money you've spent. 

I've been in a flare for about 4 months now and can't imagine what a year would be like.

I see that you're new to the forum and wanted to welcome you.  Check out the second thread on the forum called Fibro 101.  I hope you find your answers soon and keep posting... we're here for you.

Warm hugs, 


Patti
 
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel. 
Meds = Elavil, Tramadol, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 2/23/2009 2:22 PM (GMT -7)   
Hi, Philly, and welcome!  I've had flares last nearly a year.  There are no set rules with fibro. 
 
Have your doctors checked out vitamin and mineral levels?  I used to have bad leg cramping and foot cramping...to the point my feet would become distorted right before my eyes.  My doctor gave me Quinine that that helped a lot.  Then I got osteoporosis and had to take extra calcium.  And you know what?  The cramping stopped when I started taking the extra calcium!  I take Citracal (calcium citrate) because it's the easiest absorbed.  I take one in the morning and one in the evening and there is calcium in my multiple vitamin too.  I checked on the Internet and found out that a deficiency in calcium can cause cramping!
 
I also found out I'm deficient in vitamin D.  That can lead to more pain and fatigue.  I now am taking 2,000 IU of D a day and feel a  lot better.
 
Many with fibro are lacking in malic acid and magnesium.  I started taking malic acid/magnesium supplements and they have helped me with pain and fatigue, too.  So, there are some basic things that, if you are deficient, can cause a world of problems.
 
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good info all about fibromyalgia...including a link all about the malic acid/magnesium supplements and how they work in the body.  They don't work for everyone but many have had good results taking this...including me!
 
You do need to keep moving, too.  If you sit or lay too much you will be stiff as a board and you will have  more pain.  There are some gentle stretching exercises in the Fibro 101 thread and also walking is wonderful for fibro.
 
Moist heat feels great with fibro.  Hot showers or using a Bed Buddy feels so good.  You can find Bed Buddies at Walgreen's and other places or you can make your own.  Take a tube sock, fill it 2/3's full of raw long grain rice, and tie a knot at the end.  Then you microwave it and it gives off moist heat due to the moisture in the rice!
 
I'm so glad you found us!  You have come to a good place.  We will help you as much as possible.  Read back posts and ask questions.  We are here to help you.  You take care 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


Sera Smiles
Veteran Member


Date Joined Nov 2006
Total Posts : 671
   Posted 2/23/2009 3:40 PM (GMT -7)   
Philly- have you had any tests for allergies? Could you possibly be allergic to something unknown to you? What is your treatment for endometriosis? Is it possible that the endo is spreading and causing pain during your cycle?
"A butterfly is most vulnerable immediately after its metamorphosis."
 
Dx FM- 2003
Rx Meds- Ultram, Flexeril, Toprol, Cymbalta, Buspar 
OTC meds- Benadryl, Claritin, Melatonin, Valerian, B Complex, Multi Vitamin
 
 


julieleaps
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 2/23/2009 5:14 PM (GMT -7)   
I've been in this flare since September - when the weather started doing a serious change of season.

I'm praying that I will come out of it with another change of season - hurry up, spring!
Still learning how to manage my Fibromylagia, and all the lovely gifts it brings.   
I had severe spinal stenosis, had fusion done on C5-7, and my life has changed. 
 
 


lost in philly
Regular Member


Date Joined Jan 2009
Total Posts : 243
   Posted 2/24/2009 7:13 AM (GMT -7)   
Thank you everybody for your replies! I felt silly but I am sure I 'm not the first to get teary reading responses. It is just so hard to imagine that someone could understand how I am feeling.
I have just recently went on medical leave from work. I am hoping that will help alot with the stress and running around. It will give me more time to just handle life...since it takes me about 3-4 hours to do what a healthy person does in 1 hour! Plus a nap afterwards! hahaha
I havent (I agree) found the right meds yet, the are always changing but I do take magnesium. I can attest to that!
My gyn treats my endometriosis with birth control pills to keep me from menstruating. I was told it would keep the estrogen levels low in my body so I wouldnt grow extra "stuff". To be honest, the endo and the fibro happened at the same time...they gave me a pill (loestrin) that made my belly pain go away and then I switched gears and focused on the fibro. Too much to stress about! I prob should have looked deeper into the endo dx but I just couldnt handle all of it, you know?
Thanks again for listening.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Fibro, Endo, Migraines, Asthma, CFS

Topimax, Fentenyl Patch, Effexor, Crestor, Resoril, Loestrin

B6, B12, Magnesium, Melatonin, Omega3


GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 2/24/2009 7:39 AM (GMT -7)   

Hi Philly and Welcome-

I got fibro a year ago next month and when it first hit the pain was excrutiating. And it lasted for months- by the end of last summer it started to settle down but when late fall rolled around, the bad pain was back and have been dealing with alot of pain over the winter months. I am hoping too that with spring around the corner things will ease up some.

I feel for you- hopefully with some time off from work, and having less stress things will settle down. :-) Nice to meet you and you have come to a great place! Having a support group has helped me alot.

GamJill
 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
 
Zoloft, Tylenol 4000 mg., Darvocet  

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