New Problem

[Indianagal]

It has been such a long road for me. I first got diagnosed with fibro in September, 2011. I had all the classical symptoms of fibro. I have been getting treated for fibro since that time by a neurologist that I recently encountered a problem with. I last saw him in October of 2013. I take 120 mg of Cymbalta and 200 mg of Lyrica each day for my fibro. When my lyrica started to run out in November I called the mail order company that I had been getting my meds from and they told me they had been trying to get a new script from my neurologist for the lyrica to no success. I called the neurologist's office and for whatever reason was unsuccessful in getting the problem resolved. I ran out of lyrica and was feeling really awful and ended up going to a GP who gave me a script for the lyrica so I could start on it again.
I recently got approved for SSD which has been a godsend...it took me over 2 years to get it. I had been without health insurance for quite some time so am happy now that I have medicare. I decided since I have medicare now that it would be a good time for me to get some physical therapy as it had helped me in the past. I got a letter from the GP so I could go to PT.
I went for my first PT on Tuesday of this week. The director is a wonderful woman and seems very knowledgeable. She did an assessment on Tuesday and I went for my second appointment yesterday. Yesterday she did a balance test and she was alarmed by the results. My balance is terrible, I did better with my eyes open but when she had me do the test with my eyes closed I nearly fell over.
She said she was concerned and has now suggested I see a neurologist. I told her I was looking to find a rheumatologist to treat me for fibro but she said at this time she believes I have other issues and should see a neurologist.
I told her I had a problem with the neurologist I had been seeing and also told her the last time I saw him he suggested I have a CT scan. At that time I had no health insurance and told him I would not be able to get that done until I had insurance to cover it.
I am to go back today to the PT office and the director is going to give me a letter of recommendation to see a new neurologist.
I really don't know what to think at this point...wondering if I was misdiagnosed in 2011. I told her that I belong to this support group and read about others having flare-ups in relation to fibro. I have no idea what a flare-up is as I am constantly in pain.
I would appreciate any feedback to my post....I am really concerned now that I have an even bigger problem.

 

[cmetryme]

Hello I was diagnosed with severe fibro last year. For fourty years and many doctors. To include all the ones u stated here. They all told me I have metal allergies. As the years past, I could no longer touch anything metal due to the shocking and burning. I'm 50 yes old now. I can't get within 3 feet of a shopping cart w/o level 7 pain electrical like shock. I went to a homeopathic doctor who had seen this only one other time. She said it is fibro. At this stage the treatment is morphine. Unless u have cancer u can't get it. Lyrica worked for 6 months (400mg) a day. I am losing my eye sight due to the lyrica. Stopped taken it. The GP is all you need to find the right meds for you. Your always going to have pain . stay strong and check your B12 levels . find your triggers that cause the flare up. Get the gp to give u something to relax you during the flare up. The more relaxed you are, the muscles send less messages to the brain to send pain to that area. The messages go through the nerves which is y they want u to goto neurology so they can numb your nerve every six months. Its your choice so think long and hard on it. I feel your pain! Be strong��

 

[1sweed]

Hey there girl I am sorry to hear that your in so much pain. I wish you the best of luck in seeing this new neurologist and with luck getting answers to all your questions. I am glad to hear you have a good PT that seems to care about your well-being and wants you to have the tests you need to pin-point this new health problem. It is very likely you have fibro along with something else.

Also glad to hear you finally got your SSD and now have medical insurance so that you can see the doctors you need and have a way to pay for the tests. I guess the best I can do for you now is offer hugs and encouragement to be brave and face this new unknown, and know that we are here to give you support no matter what the outcome.

It is always stressful and scary when doctors take notice and tell you to see another specialist, but have courage dear friend we stand behind you and offer our best hopes and prayers that you will be alright. Please let us know how you make out so that we can be there for you as added support. You can always message me if you need too.

 

[MEgersheim]

Indianagal,

I too wonder what a "flare-up" is as I am also always in a constant state of pain.

I have felt the SAME pains my entire life with waxing and waning intensities, each one taking a back seat to one another. Shoulder, hip, trapezius, scapulae, gluteal all on the left side. I actually looked back at my pediatric medical records and saw that my first visit to the MD for an "injury" for "unexplained subscapular pain". That's the muscle underneath your shoulder blade.

It seems that the only doctors that have done a thorough exam on me have been the ones who never see me again. For example, the Physiatrist who diagnosed me and then referred me to his Rheumatologist buddy because he himself could not treat Fibromyalgia. Then there was a Neurologist who I went to for a second opinion when I felt I needed surgery for my stenosis but my own neurologist is only available Tuesday, Wednesday and Thursday(when both my mother and I believed that is what was causing all of this). He did the most thorough neurological exam I had ever had. Turns out, when I DID go to a surgeon, he told me (even though there was hardly any spinal fluid getting through in some areas according to what I saw) there was no spinal cord compression so surgery was not needed. Strange, I thought that I felt all the symptoms of spinal cord compression to the point where I got sent for MRIs of my spine which lead me to a surgeon...

I have yet to find the right one to help me, RIGHT NOW, so I understand how you are feeling. It is extremely frustrating. Confusing. BUT, I DID stumble across a Physiatrist who found the right diagnosis after 20 years of blood tests, x-rays, CT scans, MRIs, MRAs, EMGs. He simply listened to my history, looked at my itemized list of 10 medications, looked at me point to the places where I hurt and pressed a bunch of spots which hurt like hell and VIOLA! I suddenly knew what was wrong.

I have decided to begin Physical Therapy even though I am not sure that the Lyrica and Cymbalta are even making a difference.

The point of all of my babbling is that you are not alone in your confusion and pain. However, it is very possible that you have two, or even more diagnoses. Go ahead to the new Neurologist's appointment. Go with high hopes that you may find the answer you have been looking for for so many years. Sure, he might be another jerk who tells you to go see a shrink like so many of the MDs that we all see, or maybe you have the CT done and everything is fine. But, maybe, just maybe... Perhaps this will be the doctor who will be able to shine a light on something which everyone else missed!

 

[Indianagal]

Thank you for your feedback, I think I am not as upset as I was yesterday. I took my husband, Kevin with me yesterday to my PT appointment and asked the PT director to tell him what her opinion is. I am going to make an appointment today to see a new neurologist and if he also thinks I should have the CT scan then I am all for it. If there is another issue I really need to know what it is so I can get proper treatment. The fact that my balance is awful, and that it takes a long time in the morning for me to "wake up" needs to be looked into further. I will let you know how this comes out. I did have an MRI of the brain a little over a year ago which came out good....nothing to report.

 

[wander_n_wonder]

Hello I was diagnosed with severe fibro last year. For fourty years and many doctors. To include all the ones u stated here. They all told me I have metal allergies. As the years past, I could no longer touch anything metal due to the shocking and burning. I'm 50 yes old now. I can't get within 3 feet of a shopping cart w/o level 7 pain electrical like shock. I went to a homeopathic doctor who had seen this only one other time. She said it is fibro. At this stage the treatment is morphine. Unless u have cancer u can't get it. Lyrica worked for 6 months (400mg) a day. I am losing my eye sight due to the lyrica. Stopped taken it. The GP is all you need to find the right meds for you. Your always going to have pain . stay strong and check your B12 levels . find your triggers that cause the flare up. Get the gp to give u something to relax you during the flare up. The more relaxed you are, the muscles send less messages to the brain to send pain to that area. The messages go through the nerves which is y they want u to goto neurology so they can numb your nerve every six months. Its your choice so think long and hard on it. I feel your pain! Be strong

Wow, I'm surprised to hear about the electrical shock. I personally do not have fibromyalgia but I do have friends with it. I never heard that electrical shocks are one of the things that you can experience. Now I'm a bit bothered because I do experience those shocks from time to time. Could it be a sign I have it too?

 

[Trellum]

Best of luck with everything,Indianagal! I understand why you are worried. I hope you get a proper diagnosis soon, it's really good this woman spotted this issue tho, because now you can do something about it! Please keep us posted! Wishing you the best of luck with everything! Just try to stay calm and relax, I know isn't easy, but it's better than worrying.