In limbo....

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

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

 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}

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.

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}}}}

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...

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

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

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.