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Fibro Symptoms
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Ladyteguesian posted:
Everybody I know thinks I have fibromyalgia, but I don't have very many sensitive pressure points. Is it possible to have Fibro without having all the pressure points? My pain is mainly in my neck, scapula, left shoulder and left arm. I went through the symptoms checklist, and found I have 14/19 of the symptoms that go with Fibro. I am 5 years post MVA, and I can't get a diagnosis because either the doctors don't believe in Fibro or they say I don't have enough pressure points.. Please help me.
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booch007 responded:
I too don't have ALL the points you are to have. It was years and 9 doctors to have a neurologist (myofascal specialty) diagnose and treat me. I always said i have a bad neck, and believe even to now that my work has promoted this mess I am in.

The diagnosis of this is not just done by the points, that is a guide to put it together, if you have a physician who first doesn't believe in the diagnosis itself you are screwd....

I fought NOT to have this label on me. I am Chronic Myofascial Pain Syndrome. (they are cousins) I have no FOG, rare tired unless I deserve it. But I had sleeping issues from the trigger points. And that is another thing, I have triger points NOT tender spots. I have physiological spots of muscle congestion that are treated with trigger point injections by the neurologist I see.

This year is 10 years of injections and they reset me to get on with my life. I work full time and am as acive as I can be. I stay positive (most of the time) just a flare or two can bring me down, but then the toolbox in resources here has helped to guide me how to fix myself. Usually 2 days of rest and tooling and I can get going again.

The ability to get someone to understand you is thebiggest. When I saw the neurologis, I chose them as I had neuropathy pain in both my hands in the morning, and range of motion issues as well as a headache (left side of the head....if I crossed the line and did too much) I always treated the neck muscles to releive the headache...so I knew it was muscluar in origin. As I spoke she showed me each muscle group and reason for the symptoms. I couldn't lay down as the neck muscles (scalenes) were choking me. She explained gravity and spasm..low lying undertoned spasm...
The book she used was a Myofascial Pain medical book written by Dr Travelle and Dr Simmons. ***I went home and bought the book!

I read it and highlighted everything that made sense about me!. IT WAS MY MOMENT , my moment of validation. She helped me so much and began the trigger point injections to release my muscles. It is not an easy treatment but it is so valuable for me. I receive 30-60 injections all over the shoulder girdle and neck area. If it doesn't hurt it is not in the zone it belongs.

I use a manual called. FM and Chronic Myofascial Pain a suvival manual by; Dr Devin Starlanyl to help me follow my body and do my own therapy at home. It helps to understand cause and effect.....some time I can get it fixed and moving.

So, you are in the early part of the process and that is getting a physician champion to diagnose you correctly. Then you can move forward in therapy and supplements to tune your self up. Somethings you can start now with. Like the Vitamins, no sugar substitutes (aspartame) drinking and hydrating your body with water. Eating well.

Something is going wrong with you and to get it better and in line offer the body all you can. We have a great ability to heal. BUT this is so complex that it isn't easy to accomplish. Mg 250mg twice a day has helped me alot (thanks to Dr Oz on TV and then talking here to Dr P.

You always have Dr P. here to talk with too. He cannot diagnose you but he can guide you a bit and help you to go in the right direction.

I send you all my best and just stay around here on the board, many have walked this early path and know the frustrations there are here. Good lck, all my best, Nancy B
 
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Ladyteguesian replied to booch007's response:
Oh Nancy THANK YOU! I have an appointment June 26 with a neurologist here in town. I know he's good because he does half the month at the University of Utah. I hope to my soul he can help me. SSA and the ALJ judge think I'm over exaggerating my symptoms and outright lying. I broke down and cried (tearless) when I got the denial letter and read it. I'll keep you posted on my (hopeful) diagnosis and progress.
 
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dollbug replied to Ladyteguesian's response:
Hello Lagyteguesian...and welcome...MiMi in NC...I just wanted to say...hang in there with this....it is a vicious cycle of what we, FMers, face and endure each and every day....do NOT give up on your disability either....the system is *badly broken*...and it is there normal to deny a person the first time and perhaps the 2nd time as well...do NOT allow them to win....APPEAL it...until you are approved...we work and this is a *benefit* for people who can no longer work...

I don't really understand why everything has to be so complicated and complex for us FMers...we have quite enough stress and everything else to deal with...and then we are faced with something else...and they always say....*get an attorney*....I fought my denial on my own and won...and I am sure you can to....

Be sure and talk to your doctor about checking your Vitamin D level....so very important for a lot of people these days...low Vitamin D can cause additional pain for some of us and it can also affect other illnesses as well...

Be sure and learn all you can about the wrath of the dragon, aka FM...the more you know...the better you will figure out how to cope...learn how to pace, pace and pace even more....did I mention pacing is a MUST for most of us FMers?

OK...I am sure you will learn a lot here...we are blessed with not one doctor but two doctors....you can ask them questions by putting their name in the subject line of your post...

Take care and good luck...


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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booch007 replied to Ladyteguesian's response:
Mention Travelle and Simmons it is a classic medical resource and he may just see* a bit better with that idea. Ask if they do myofascial work?
Look into physiatry (this is Dr P's specialty) physical medicine and rehab called PM & R for short, it may be an option as well. They look at you so differntly then others.

A long time ago I learned if you go to a doctor who only has a hammer he will only see nails, and same for the screw driver doctor and seeing only screws.

Keep on keeping on. BE DILIGENT in becoming knowledgable and learning about yourself, your triggers and fixes and all the NON medical things that make you better. MOTRIN was my best friend forever, until things changed for me.

I wish you luck. I am sure more Fmily will talk to you as well....hugs, Nancy B
 
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Ladyteguesian replied to dollbug's response:
Thank you Dollbug (cute handle) My next step is to the appeals council. As I stated in my post to Nancy, I have an appointment with a neurologist that comes up here from the University of Utah. He's supposed to be the best around. Sadly though by the time my appointment comes around I will have been waiting 3 months to see him, and I'll only have a month to appeal. I am going line by line and discrediting most of what the ALJ stated in his report. I just wear out so damn fast that it's hard to get a lot done. I had my vitamin D checked about 8 months ago and it was within the appropriate levels. She actually did a full CBC and checked for everything including RA and Lupus. Thankfully both were negative. Now having said that, she does believe that FM exists, but she also believes that you HAVE to have 11/18 trigger points. I'll keep everyone posted about my journey to a diagnosis. Thanks- Bonnie
 
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Ladyteguesian replied to booch007's response:
Thanks Nancy.. I will mention that to him.-Bonnie


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