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Fibromyalgia Community
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Avatar universal

Fibromyalgia?

I have had many symptoms over the last couple of years.  Recently my Doctors have ruled out Lupus, MS, thyroid issues, diabetes.  My symptoms are:
Headache that pretty well never goes away
Cognitive issues (concentration, focus, memeory, finding/forming words)
Random aches and pains
Tingling/numbness, "buzzing" in spine, legs, hands
shooting pains/burning pains (severe enough to wake me up)
poor sleep
wake up in pain
stomach/Gi issues such as constipation, heartburn, bloating
dry eyes
fatigue
pain is seeming to get worse/last longer

I was found to have stenosis in my cervical spine on an MRI caused by a bulging disc.  My neurologist suggested this was the source of most of problems including headaches, pain, tingling.  She sent me to an ortho surgeon who said the bulge was minor and likely causing NONE of my symptoms.  He wants the neuro to rule out carpal tunnel and possibly have a conversation about "a condition that causes  chronic aches" that he would not name because "I don't have the qualifications to give this dx", so he is sending the neuro a note about this and I have an appt next month.  I assume he is referring to fibromyalgia, but I am not certain.

I have been treated for anxiety twice and do not feel this is the cause of my symptoms.  I also had another Dr. try to treat me with adderall for ADD.  I switched drs and none of my current ones feel this is the problem.

I would love to here from those of you with fibromyalgia.  I'm sure everyone experiences this condition in a different wasy, but I am curious as to whether or not my symptoms line up with anyone else and whether or not it is worth the conversation with my neuro.

my worst symptom is probably the cognituve issues.  However, I am having difficulty in expressing this to my Drs who tend to write it off as anxiety or a "distracted" feeling because I hurt.  I feel it is more than that.  I feel it is an actual symptom, a strong feeling that I have a hard time putting into words.  It is really affecting my daily life.  I wish i could figure out a good way to describe this feeling so my Drs would get it.
8 Responses
Avatar universal
A cervical spine problems causes symptoms from the level of the problem down.  The symptoms don't travel up so if you have tingling in your face and on your head it is something else.  A spine issue can cause headaches though as the muscles can spasm in the neck and cause a headache.

You may want to get tested for Lyme disease.  It can cause most of your symptoms.
Avatar universal
Thanks for your response.  The ortho said it is not because no nerves are being pinched or pressed upon.  

The spine issue also does not account for cognitive issues, right?

I have not been tested for lyme's disease, I'll look into that.

Thanks!
Avatar universal
First of all please try and find your words. Working with your doctors and being your own advocate is so important. If doctors don't have an exact answer they will pass you from one doctor to another.  I have had similar experiences to you. I have cervical issues, I had ruptured a few discs in my cervical area and had headaches all the time. If you have symptoms and there is a bulging disc it sounds like to me it is potentially one of your issues. I would almost want a second surgeon to look at that if I were you. I would not rush in to surgery especially cervical. It's such a tricky area and I have a whole new set of problems after 3 cervical surgeries one of which was a fusion.  

Having fibromyalgia I too have many digestion issues and that alone can cause pain. If you can try to get your digestion and sleep under some balance that can help you. There are supplements called enzymes. You take one with each meal. It helps you better digest your food. Then there are foods. If you can try to limit or eliminate foods that cause pain. Simple sugars (cakes, cookies, soda). Also white flour, so white bread, white potatoes, white rice. There is a good book, "Life Without Bread." It discussed the link between pain and foods.

It does sound like you could have fibromyalgia but it may be complicated with the cervical issues. If you can try to come up with a list / a way of explaining how you are affected by your pain it would help you figure it out. Start a journal of your daily experience with your pain. Even if it's a few sentences daily. Start with headaches. Begin by describing where the pain originates from. Then describe the headaches.

Explain how you don't sleep.  Sleep is essential especially for fibromyalgia or any type of pain. If you can get 6 hours minimum you can better deal with the pain. Have you ever had a sleep study? I requested one and I have sleep apnea. I also take trazadone.  It is an older sleep medication that is taken at bedtime.  You and your doctor can decide if taking something would help.

To me your top list would be your headaches, not sleeping and pain.  
If you can deal with foods, digestion and drinking more water on your own and allow the doctors to work with you on the rest you might be able to get a plan of action in place.  
Getting your voice and being prepared to talk to the doctors in a way that helps them understand what you are feeling and what you think you might need is the best way to approach this.

For me my pain is managed with pain medication but I still experience pain.  I take Topramax for headaches, that has really helped.  I take enzymes and drink water all day  and watch the foods that I eat to avoid bloating and digestion problems.  I also take Pepogest for constipation.  For anxiety I take Lorazapam occasionally and I go the gym 2-3 times per week and do an exercise program in the warm water. It helps the pain as well. I also get B12 shots monthly for fatigue.   If it is fibromyalgia trying to limit stress on your body and spirit is crucial. Figuring out your triggers is key.

The best to you and keep us posted on what you find out.
Avatar universal
Right.  The spine would not cause cognitive problems.  I  had an unnecessary spinal surgery a few years ago.  Long story short, my problems were and are caused by whatever disease/condition (possibly lyme) I have going on and  not my c spine.  I was told it was my spine at the time.  Later several other specialists told me it was  never my spine at all.  The surgery made me way worse.
1185172 tn?1264284610
Hi Kristin - I had deja vu reading your story as I'm sure most with Fibro do.  I suffered the symptoms for 4 years before being diagnosed by a Rheumatologist (who was a jerk and said there was no reason not to be working or to take pain meds).   Anyways, I had the gamut of tests, neurological, sleep studies, had my tonsils out,tested for lyme disease, adrenal tumor,brain tumors and so on with no luck, didn't feel one bit better and had no clear cut diagnosis.  I know it's frustrating.

For my doctor visits before and even now, I write down what I need to ask in advance and prepare a list of any new symptoms and so on (when I think about it) and it helps alot  - my appts are much quicker and smoother and I know my dr. appreciates it.  

Also, Fibromyalgia is new and there are alot in the medical community who think it's a mental disease (which it's not according to the CDC) ask for references for dr's who actually treat the specific diagnosis and start there.   As concerned said above - Sleep is the most important thing to have - restorative sleep and there are many sleep aids that you can take that will not make you feel hungover in the morning.  
Just hang in there and KNOW you are NOT alone, there are an estimated 6million people who have this illness and over 1/2 have no diagnosis!  Good Luck, Sharon
Avatar universal
Thanks for all of your responses.  

I have not seen a Rheumatologist, but I am looking for one.  My physical therapist suggested this. There is only one in my local area, so I am trying to decide whether to make an appt with her or begin looking in the nearest big city with lots of specialists (about an hour away).  

I weaned myself off of neurontin recently because it made me so, so tired, but my sleeping is worse without it and I am in more pain than I thought!  Although, I do not seem to have severe, debilitating pain that I hear so many fibromyalgia patients describe.  

I just started PT last week to help with my cervical spine issues, so we weill see if that helps with the headaches.  It would be nice to have some relief!


Kristin
9247243 tn?1439955039
Hi Kris, I'm Jana and I'm new to this site but I have been in pain for years! I am 33 and I feel so old b/c of the constant aches and pains! I have Fibromyalgia and Bulging/Herniated Discs in my Neck, and Many other Health Issues as you can see in my profile! First of all if you have Fibromyalgia there is something called the Fibro Fog, where you have a hard time concentrating and verbalizing! I personally think the most Prominent Symptom of Fibro is the Pain. A constant Deep, Throbbing, Burning Pain in Various Parts of the Body: Especially the Neck & Shoulder Area and down the arms, I hurt down the middle of my back and into my hips, and the front of my thighs! Getting a Good Nights Sleep is Rare and you Wake Up Very Stiff & Sore! You have a hard time sitting still or getting comfortable! I do get headaches with Fibro, although some do not. My headaches are from the top of my head all the way down my neck, but I also have some other Medical Issues that Contribute to my headaches that cause pain behind my eyes & blurry vision! You should mention Fibro to your Doctor b/c he can do a Pain Test on Certain Ares of the Body  that are usually Associated with Fibro! All he does is press & poke at some areas and ask which areas are more sensitive to touch, and that is generally all they do before diagnosing you with Fibro. I have heard that they now have a new way of diagnosing you with Fibro through a simple Blood Test, although it may not yet be available at all Medical Establishments. I hope this helped some and I wish had more info for you but I am sure many others on this Forum can offer some Helpful Insight! Hope you get the answers you are looking for but be firm with your Dr b/c they tend to dismiss things if you aren't Persistent! Take Care, Jana
9247243 tn?1439955039
I also forgot to add 2 things! Fibromyalgia & IBS or Acid Reflux Generally Always go Hand in Hand! I have both and a ton of people who have Fibro also have IBS or other Intestinal or GI Issues! Also I have noticed that although I am in Constant pain I will have what I call Flare Ups, where the pain is much Worse than Usual & I have Headaches that accompany it! Not Getting Restful Sleep Really is the main Give Away that you have Fibro and You Will Wake Up a Ton During the Night! In the Morning you Will Feel Like you Have Been Hit By a Train! Sorry to Scare you but Finding Out What You Have Is the Most Important Part! I am here if you ever need someone to talk to!
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