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kelbel53078
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 4/2/2009 9:01 AM (GMT -7)   
Hi everyone.  I am in limbo with my Dr trying to figure out if I have Fibro or not.  It's been about 6 months of hell, and it is getting worse.  I am trying to get as much info as I can on this disease, trying to figure out if this is what I have.
 
I do have neuropathy.  Is neruopathy common with Fibro?  When my symptoms started 6 months ago I didn't have pain.  I just had numbness, tingleing in my hands and feet.  A few months later I started getting really bad fatigue.  Now I have such awful pain it is almost unbearable.  I am on Gabapentin 900mg a day, and it isn't even touching it. 
 
I don't know what to do, or where to go, or who to talk to.  My symptoms match MS to a T, but I have no brain lesions.  My neuro told me that some lesions don't show up on an MRI.  He told me it could also be Fibromyalgia.  He never checked the common pain pressure points though.  So what do I do until I get a diagnosis?  Just suffer in pain. 
 
I can't get on the floor and play with my kids.  I can't push the grocery cart because my hands, wrists and forearms hurt so badly.
I am so frustrated, I think people are thinking that I am crazy or something, because the Dr can't find anything wrong with me.  Did anyone else go through similar problems trying to get a diagnosis.  When people ask me what the pain feels like, I can't even describe what it feels like.  It just hurts...
 
Any advice would be wonderful.  Thanks.
 
Kelly

Birdy57
New Member


Date Joined Apr 2009
Total Posts : 5
   Posted 4/2/2009 9:29 AM (GMT -7)   
Kelly,
Have you seen a Rhuematologist yet? They are the best Docs to diagnose Fybro. I too have tingling in my hands and feet-that just started about a month ago. I see my Rheumy in 2 weeks, and my GP next week, and will probably have to get a nerve test to see what's going on with that. I don't know if that's common with Fybro-according to my Rheumy-ANYTHING is possible with Fybro. It's an auto-immune disease that is still a mystery in the medical community. Maybe someone else here can shed some more light on the matter. Good luck, and welcome. I am new as well. smilewinkgrin
 
Birdy scool
Life is like a box of chocolates. You never know what you're gonna get.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 4/2/2009 1:51 PM (GMT -7)   
Hi, Kelly, and welcome!  It's awful not knowing, isn't it?  But you will find out one of these days.  I did have the pain and tingling in my arms and hands.  It was almost like carpal tunnel.  It hit in my elbows, like I banged that "funny bone" area.  I had the electrical-type pain shoot down in my hands and it stayed that way for over two weeks before I got any relief!  It was horrible.  I was diagnosed with fibrositis at the time...that's fibromyalgia nowdays.  I was put on ibuprofen with food to help with the pain.  My hands were nearly numb from the pain and it took months to get the strength back in my hands once the pain subsided.  It is totally gone now and I don't have a problem in that area.  That's how fibromyalgia is.
 
The medical community says that fibromyalgia is NOT an autoimmune problem but I still wonder about that.  Everything else that I have is an autoimmune problem.  Perhaps when they really understand this illness they will find out they were wrong.  Besides, ibuprofen helps me a lot.  I guess I'm pretty fortunate.
 
Now, I take ibuprofen with food and extra strength Tylenol for my pain and I also take malic acid/magnesium supplements for pain and fatigue.  These have really helped me  If you check out the Fibro 101 thread...the second thread on the forum...you will find links to good info about fibro, including a list of symptoms and also a link all about the malic acid/magnesium supplements and how they work in the body.
 
I also take extra vitamin D.  Many with fibromyalgia have a vitamin D deficiency.  If you check back posts for the last week you will see several posts about vitamin D deficiency. 
 
Hot showers and moist heat are very good for fibro.  Many use a Bed Buddy.  You can get these at Walgreen's and other places or you can make your own.  Take a tube sock, fill it 2/3's full of raw rice, and tie a knot in the end.  Pop it in the microwave and it gives off moist heat from the moisture in the rice.
 
You do need to keep moving with fibro.  If you sit or lay too much you will be stiff as a board.  I enjoy walking and swimming when the weather allows.  I also do gentle stretching exercises and these can be found in the Fibro 101 thread, also.  These can be done sitting down and they really do help.
 
I hope you get a diagnosis soon.  It's terrible that you have to run from test to test and still don't have answers.  But many of us have been through that and it sure isn't any fun.  I use a board certified Internist for my fibro and other problems.  Many use rheumatologists for their fibro.  The key is to find someone that believes it exists.  It sounds like your neurologist does and that's good.  Maybe he/she can give you a referral to a doctor that specifically handles fibro if he/she doesn't. 
 
There are things out there that can give you some relief.  You just have to find what works for you.  What works for one doesn't necessarily work for another with fibromyalgia.  But we are here to help you.  Try to keep a positive attitude with this illness and look forward to each new day.  You will get some help and you will find things to help ease your discomfort.  I'll be praying that you get the help soon.  Keep looking and don't sit there in misery.  There is help out there.  Once you get some control of your pain, you can face this illness square in the eyes and learn to work around it and live a full and enjoyable life with fibro.  I have. 
 
I'm so glad that you found us and joined in.  You have come to a good group that love to help one another and, as a bonus, we really do care about each other.  So, read the Fibro 101 thread, back posts, and ask questions.  We are here to 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


skylark61
Regular Member


Date Joined Apr 2009
Total Posts : 34
   Posted 4/2/2009 2:00 PM (GMT -7)   

Hi Kelly, welcome!  I am a new member as of today too.  I know exactly what you are going through.  It took a year for me to be diagnosed.... I was told it was psychosamatic (sp?).  I went to a behavioral therapist at my doctor's request.  Come to find out... it isn't all in my head.  The pain I am experiencing is real and it is Fibro.  There are no tests for it.  I have learned a lot by reading the posts.  You will be in my prayers.  I hope you get a diagnosis real soon.  I confronted my doctor myself with the issue.  I believe we have both been led to this website for a reason... and everyone that are members.


Hugs to Everyone!
~Dianna~
 
Fybromyalgia, Anxiety, Depression, Sleep Disorder, IBS, Migraine Headaches, Mitral Valve Regurgitation, Osteoarthritis, Degenerative Disc Disease, Scoliosis, Herniated Disc, Osteophytes
 
Prozac, Nabumetone, Midrin, Lidocaine Patch, Ambien, Lipitor, Flexeril


KitKat_down
Regular Member


Date Joined Mar 2009
Total Posts : 55
   Posted 4/2/2009 2:22 PM (GMT -7)   
 Hello Kelly , It seems you will be going to see more doctors, having tests done and going thru hell with all your pain and I see you have just recieved a lot of great advice.
  Keep notes. Get a couple of sprial notebooks;on the front staple all doctor cards to it.
 In the first ( at least 5 pages) write all the meds your on and vitamins.
 When you have a doc appt. write the name and date you go and keep a list of questions to ask ( even up to a month before you go cause you always think of something to ask).
 Leave a few spaces open so you or the doctor can write answers there.
 Another thing i do is ask for a copy of blood tests,x-rays , a list of surgurys in a folder.
 All the doctors I go to seem to like this system and they even ask other patients to do this.
 At least this might help you in your doctor visits and yourself also,i have notebooks from years ago and it still comes in handy and i hope it will for you also. All the best to you.
Please go to a reumatologist as soon as pollible !! Hang in there you will get diagnosted soon and put on the right meds,Hope to see you here more often.{Gengle Hugg}
  Fibromyalgia, Graves , Cronic fatigue , High anxiety , Deep depression , Fibrocystic breasts , Osteopenia , Muscle weakness , " defect on the right side of the cerebella hemisphere ".  Total hysterectomy.
--Robaxin , Valium , Lyrica , Tegratol , Norco 10/325 ,Melexicam,Elavil, Fentanyl 50 Mcg,synthriod,premerin ,
  Super B- Complex , vitamin D 1000 i.u , Omega 3
   
 
                                   


kelbel53078
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 4/2/2009 2:39 PM (GMT -7)   
Wow guys.  Thank you so so so much.   Thanks for all of the advice.  I do have copies of most of my bloodwork and MRIs.  I just don't have them as organized as some of you do!  
 
I do have a Vit D defincency and I take supplements every morning.
 
Thanks again for all of your help and suggestions.

KitKat_down
Regular Member


Date Joined Mar 2009
Total Posts : 55
   Posted 4/2/2009 2:54 PM (GMT -7)   
hey kelbel , your quite welcome !! I am new here also , and i do need help at time also and everyone here is sooo very helpfull. Keep looking thru the pages here and on the front is fibro 101 with many links to look at, very helpfull .Let us know how things go ok ? Great fibro site we found, for sure. yeah

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 4/2/2009 3:11 PM (GMT -7)   
Go check out the Lyme Disease Forum and see if you think that might fit your symptoms. I was diagnosed with Lyme about 18 years ago and it started with fatigue, tingling, and pain. The tests for Lyme are very unreliable so educate yourself before you rule it out.

SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 4/2/2009 3:24 PM (GMT -7)   
Hi Kelly,

Welcome!! You have gotten some wonderful advice already, but I was curious about something-You said that your Dr. didn't check the pressure points/tender spots, but I was wondering if you have checked for them yourself? They are pretty easy to find, but you can find a diagram (I think there's probably one in the Fibro 101 thread). If you have them and you hit one-trust me-there will be no doubt in your mind!! OUCH!

When I was finally diagnosed, my Dr. told me that if all the other tests are negative (which mine were) and these spots are there (I have all 18 of them), it's pretty much the surefire way to tell that Fibro is what is going on.

You said MS has been ruled out, but I know there are other tests the Dr.'s do first. I had to go through tests for MS, Lupus, Lyme, and RA before I finally got a Dr. to decide I had fibro. This whole process is a total pain, I know, but they have to do to make sure there isn't another serious problem at work in your body.

I do really hope you are able to get some answers. Until you do, please do come here, ask questions, read the Fibro 101 thread, and also take gentle care of yourself! I, too, have small children and I know how hard it can be to get through the day with this pain and take care of your kids at the same time. Sometimes just knowing there are other people who really understand can be very helpful, so please remember that we are here and we care!

{{{{gentle hugs}}}}
love and hugs
~danielle


fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck


skylark61
Regular Member


Date Joined Apr 2009
Total Posts : 34
   Posted 4/2/2009 4:01 PM (GMT -7)   
Hi Dagger, I was tested for Lyme Disease because I had the classic symptoms but it was negative.  Then we thought I could be suffering from the long-term effects of Lipitor since I had been on it for a couple of years.  I stayed off of Lipitor for 3 weeks... no change at all.  Doctor put me back on it.   They did a couple of tests for Lyme... all negative.  I am a member of Kaiser Permanente and I can't afford to go to a doctor out of network.  I just hope and pray that they have given me the right diagnosis this time.

Hugs to Everyone!
~Dianna~
 
Fybromyalgia, Anxiety, Depression, Sleep Disorder, IBS, Migraine Headaches, Mitral Valve Regurgitation, Osteoarthritis, Degenerative Disc Disease, Scoliosis, Herniated Disc, Osteophytes
 
Prozac, Nabumetone, Midrin, Lidocaine Patch, Ambien, Lipitor, Flexeril


Stari
Regular Member


Date Joined Mar 2009
Total Posts : 235
   Posted 4/2/2009 4:09 PM (GMT -7)   
I hate my left hand if I could cut it off I would but than I would be in psic ward.  It goes numb,,,feels like there is a current going through it....radiates pain....and sometimes I can't tie my shoe or button my blouse.  Than the pain moves to my back...

KitKat_down
Regular Member


Date Joined Mar 2009
Total Posts : 55
   Posted 4/2/2009 7:48 PM (GMT -7)   
 Hi Stari , Its usually my right hand that does that,,the pain you get, does it go  the middle of your back ?? or where in ur back ??? hugggg

kelbel53078
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 4/4/2009 10:13 AM (GMT -7)   
Hi guys. I have been tested for Lyme dz twice, and it's neg. I have tried pressing the tender points and I doesn't hurt anymore than it normally does. My husband even looked at the chart and tried pressing all of them. None of them made me jump or scream "OUCH". Whatever type of flare this is, it is horrible. I am on the 6th day of constant, intense and screaming pain. It is mainly all in my left side. From my neck, shoulder, arm, wrist, hand, back, hip, leg and foot. All on my left side. I almost fell down the stairs twice because my left leg keeps giving out. I called my neuro and he increased my Gabapentin from 600mg a day to 1200 mg a day. It helps a little big, but it still brings me to tears to lift my kids, or change laundry. Mopping and sweeping the floor is awful.

I keep bumping into things, and I feel so weird. I felt this way even before he increased my Gabapentin. I can't sit, stand or lay down to get away from the pain. My left hand just doesn't work right. I keep dropping things. My right hand does it too, but my left is much worse.

Does this stuff happen with Fibro? I know about the pain and all, but the legs giving out, is that a symptom of Fibro? I am just trying to learn everything that I can so that I can go into the neuros office and not feel intimadated. I think I am going to demand the LP. I just want to know if this is MS or Fibromyalgia so that I can get on the proper meds and move on with my life.

Thanks everyone.
Kelly

kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 4/4/2009 9:07 PM (GMT -7)   
kelbel, (great name, BTW),

Welcome to the land of limbo. It's the autoimmune disease's official dance! wink I think most of us can relate to what you are going through. I was dxd last June, and I STILL cannot get any pain relief (I just started Lyrica almost 10 days ago, and I feel even worse than I did before I was on it). Before I started taking Lyrica, I was up to 2400mg (600mg 4 times a day) of Neurontin. Oh, I am also in a wonderful limbo with Lupus, but that's another story. rolleyes

I really hope that you TRY to be patient and find the "thing" (be it meds, exercise, yoga, acupuncture, etc) that works for you. In the meantime, we will always be here if you need us. We are a wonderful, ever-expanding family. Take care and try to keep some hope that one day you will be able to lift that precious baby of yours again.
:-)
Fibro, Anxiety, Chronic Pain

Lyrica 100mg BID, Klonopin 1mg BID, Zoloft 100mg BID, Methadone 75mg (methadone maintenance-NOT for pain), Ibuprofen 800mg QID prn, Prilosec OTC


I'll take the Chivas instead-Kelly Clarkson


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 4/5/2009 8:32 AM (GMT -7)   
Hi Kelly and welcome. I hope you get a dx soon. The not knowing what we are fighting is hard. My GP dxd me and then sent me to a rheumy to confirm it. It doesn't matter what kind of doc it is as long as they believe in fibro and know what to look for. It took a full blown flare of feeling like I had been beaten all over for it to all click for my doc after we had tested for everything else.
 
I do have neuropathy in my feet and I'm not a diabetic. My hands and wrist hurt the most, it's like someone smashed them between two bricks is the way I describe it. I'm sorry it hurts to pick up your children. My left shoulder hurts more than the right. I was dxd with thoracic outlet syndrome many years before fibro came along and if I sleep on my right side my arm and hand goes numb. Fibro is so diverse it's hard to say what is fibro and what is not. I would make sure MS was ruled out but that is just my opinion.
 
My 32 yr old future DIL is going through the samething and has an app with a rheumy Tues that believes in fibro so hopefully she will have the answers. She has been going through this for four years and dosn't care what it is as long as she knows what it is.
 
Good luck
 
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


GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 4/5/2009 8:36 AM (GMT -7)   

Hi Kelly and Welcome-

My fibro symptoms started a year ago and that was some of my first symptoms, my feet going numb, then my hands. I still have it but I have learned that if I am on my feet for any length of time they will go numb and then I have to get off of them and the feeling returns. Same with my hands- I will quit using them when they go numb and rest them.

All of my tests came back normal also and no you are not crazy- this is VERY real! The pain and fatigue was off the charts at first. I could not do anything, could not drive, no grocery shopping, no dishes, housecleaning, I could not even wash my own hair.

You will get your life back again, as it sounds like they are getting closer to getting this figured out. This is the time to get all the support you can, family, friends, this great forum and your Dr. sounds like he knows what he is doing.

Keep us posted and we will be here for you!

GamJill

 


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


skylark61
Regular Member


Date Joined Apr 2009
Total Posts : 34
   Posted 4/5/2009 11:29 AM (GMT -7)   
Hi Kelbel welcome!  Hang in there!  I have been battling these symptoms for over 1 year.  I honestly thought I was dying.  I didn't have enough strength to do anything hardly.  If it hadn't been for my youngest daughter encouraging me to ask my doctor about Fibromyalgia... I wouldn't even have thought about it.  This is weird but my Rheumatologist even overlooked it.  As of Monday last week my PCP just started me on a regiment of Prozac once a day, an anti-inflammatory, and exercise.  Plus, I will be going next week for physical therapy... not sure what they can do but it's worth a try.  You are in my prayers Kelbel. :-)
Hugs to Everyone!
~Dianna~
 
Fybromyalgia, Anxiety, Depression, Sleep Disorder, IBS, Migraine Headaches, Mitral Valve Regurgitation, Osteoarthritis, Degenerative Disc Disease, Scoliosis, Herniated Disc, Osteophytes
 
Prozac, Nabumetone, Midrin, Lidocaine Patch, Ambien, Lipitor, Flexeril

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