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Old 04-14-2010, 04:58 PM   #1
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Please Help: Possible FM OR Medical Mystery

I am new to the site, but I've read ALOT of threads and I feel I can get helpful insights / feedback without getting people's comments of negative nature / damning me for the medication I've been prescribed.

This is a long post, but I'd appreciate it if you took the time to read all of it and post any thoughts, advice, or experience that would be helpful.

History:
No major accidents / trauma / abuse / life altering events
The pain in my thoracic region has been going on for over 3+ years
Low back / hip pain started initially around October 2008 and found out in March 2009 that my hip was severly out of alignment.
I've seen 2 Neurosurgeons: Diagnosis - nothing wrong; I have an appointment tomorrow with a different one and expect the same response.
I've seen 2 Pain Management MD's: Diagnosis - first said Chronic Myofasical Syndrome, but he EXTREMELY over medicated and was unprofessional during a trigger point injection AND the second has yet to come up with a diagnosis. He has said that if my Nuclear Bone Scan is normal that they'll try more / different types of FM medication because as of yet the findings do not explain why I hurt as bad as I hurt.
I've seen 1 Neurologist: Diagnosis - form of RLS (because my arms & legs twitch) & possibly narcalepsy (unable to stay awake during the day).
I see my PCP frequently: He feels that I might have a mild to moderate case of FM mixed with other things.

Symptoms: (starting from head to foot)
- Anxiety
- Depression
- Migraines occur 1-2 times per week lasting 4-8 hours. The migraines are progressive and start with a deep aching pain at the base of the neck and travel behind the ear into the temple, behind the eye, and ends at the top of the skull.
- CONSTANT deep dull aching pain between the shoulder blades & spine that radiates into the shoulder blades and into the top of the shoulders. (Have had for 3+ years).
- Intense burning pain that travels along the perimeter of both shoulder blades.
- Deep dull aching pain primarily in my forearms, wrists/fingers, but sometimes in my biceps.
- CONSTANT mixture of deep dull & sharp stabbing pain in the low back/hip area (apprx 2-3" from the spine right above BOTH hips). (Have had for 1+ year).
- Intense burning pain that radiates into both buttocks cheeks, but sometimes will go further into the left leg.
- Deep dull aching pain in the tailbone.
- Sporadic sciatic-like pain in the left leg.
- Deep dull aching pain in both legs (primarily left thigh, but some times right thigh; knees; calves; ankles). If after sitting for awhile I'll have jabbing electrifying pains in my knees and ankles.
- Sporadically it'll feel like my right side of my lower-back, side, & stomach is on fire if something touches the area; when bathing it feels like my wash cloth is sand paper to my chest.
- Moderate to severe muscle / joint stiffness in the morning
- Pain is worse in the morning (until 11-12) & then worsens in the evening (around 4-5).
- SEVERE fatigue even after sleeping 4-8 hours. (Was prescribed Nuvigil 250 mg, because unable to stay awake during the day. The med helps but at times I have episodes where I have to fight to keep my eyes open).
- Forgetfulness (well not sure if that's a symptom or if it's just me .. lol)
- When talking I can't seem to "find the right word to say" (my wife hates it because sometimes it takes me awhile to finish my sentences / thought)
- Numbness / Tingling in my left foot and toes as well as in my left hand and fingers.
- When standing (after sitting or crouching) I'll have a really bad head rush
- Uncontrollable twitches / jerks in both arms and legs during the day & while sleeping. Any increase in activity causes an increase in the number and severity of twitches I have.
- HORRIBLE nasal allergies & dry eyes (not sure if these are applicable).

Things that Aggravate my symptoms:
- Sitting, standing, walking for 20-30 minutes (sitting & standing primarily).
- Weather changes (cold/wet causes the most pain).
- Any repetitive or strenuous activity (I'll hurt for a few days).
- Any increase of stress

Tests:
- COMPLETE Bloodwork and negative results for stuff like Lupus, Rheumatoid Arthritus, Thyroid & ect); but did find that my testosterone level was EXTREMELY low and have been placed on supplements.
4 MRI's
- Brain - yup had one (everything normal .. Surprisingly)
- Cervical - C5-C6 Broad 1 mm disc buldge; C6-C7 1 mm left-sided disc buldge
- Thoracic - mild degeneration on T10-T11
- Lumbar - L4-L5 Broad 1 mm disc buldge; L5-S1 Broad 1 mm disc buldge
- 2 EMG nerve tests (all normal)
- Sleep Study - Very very mild apnea, but inability to get proper Delta Wave percentage. They said you're supposed to have 20-25 percent of delta sleep and I averaged 4-5 percent.
- Nuclear Bone Scan is pending

Medication:
Opana 10 mg (1 every 6 hrs); Opana ER 20 mg (1 every 12 hrs); Baclofen 10 mg (1-2 every 4 hrs); Neurontin 800 mg (x3 / day); Cymbalta 60 mg; Nuvigil 250 mg (x1 / day); Lorazepam .5 mg (up to x3 / day); Androgel 5mg; Maxalt-MLT (as needed)
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Old 04-14-2010, 05:59 PM   #2
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Re: Please Help: Possible FM OR Medical Mystery

F150STX, welcome! I hope you find answers here. You obviously have much in common with many of us.

Anxiety and depression--ya think? It'd take some supernatural being to not be when so much is wrong.

Shoulder/neck pain, hip pain, migraines, leg pain, painful feet, burning, fatigue so deep sometimes it's as though glaze has been poured on the eyes and weights put on all the limbs (there are no words to describe the fatigue, am I right?). RLS, forgetfulness, sciatica, pain in the rear... it sounds like you have been through it all. Especially the spine problems. They say we have more substance P. Do you have reflux; if I didn't I'd take cayenne pills? Some of us have spinal defects, like narrow spinal canals. The low testosterone can add awful to that fatigue and to the functioning of the brain -- slow processing isn't uncommon with that and does improve with treatment.

When you mentioned the RLS and slow processing, though, I also wondered if you've seen a movement specialist. We took a relative to Johns Hopkins and to Emory for those problems and really liked Dr. David Rye at Emory--he spent over an hour in evaluation and he has RLS. I've got a tad of that, easily fixable with quinine, but my f-in-law legs would just jump nonstop. Dr. Rye took care of it completely. You seem to have at least three things that make your fatigue bad -- fm, rls, and low test -- that's gotta be some serious sandbag. Have you tried water soluble magnesium?

No one here will say a thing about what you have to take to try and make tomorrow better than today was. We might tell you what we've found that helps this or that... but all of us have been through doubt from loved ones and ourselves. We've all had to learn to believe ourselves while at the same time never believing anyone should or could understand this unless they went through it.

Again, welcome.

 
Old 04-14-2010, 06:20 PM   #3
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Re: Please Help: Possible FM OR Medical Mystery

BTW, F150STX, I think most of us would have answers decades earlier if we could just be admitted to a well-staff hospital for a week. It's just this piece-mill garbage that makes us look like mysteries or worse things. Real problems, don't ever doubt it.

 
Old 04-15-2010, 07:17 AM   #4
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Re: Please Help: Possible FM OR Medical Mystery

Welcome F150STX - what a well written composite list - I have 60/70% of the symptoms you describe and the same triggers that aggravate my symptoms - I was diagnosed a couple of years ago. Have you seen a rheumotologist - they are the experts in the field of FM. I'm doing my best to avoid meds and am pursuing the alternative treatment approach - have you tried any form of exercise - it's one of the few things that works - pilates/swimming/aqua/walking/cycling (gently as long as not in a flair! - powerplate. Any more than 30 mins and I suffer so I do 2/3 things a day (work/body allowing. Gentle massage/trigger point therapy (ow!) hots baths/hot tub etc etc. ANd the best things of all for me is the SUN (we're moving from the UK to Italy) the weather is constantly wet and cold here in the UK and that along with draughts is my biggest trigger (yes it's windy here too)
You'll find lots of support from some fantastic people - and a real good cross section of views which means that somewhere in replies there is usually something that will work for you
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Old 04-15-2010, 01:58 PM   #5
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Re: Please Help: Possible FM OR Medical Mystery

Sweetlife, thanks for the reminder about exercise. I've been in so much pain that just the thought of it is hard, but my husband got me out a couple of times and I was real glad afterwards. After seeing your note today I went back to the gym for the first time in four months. Still extreme pain, but, hey, at least I did something, huh?

 
Old 04-16-2010, 05:43 AM   #6
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Re: Please Help: Possible FM OR Medical Mystery

You certainly did Baserockermom!! I've still got lots of pain but I reckon if I didn't do the exercise I'd be in even more pain! I often have to drag myself to the gym/out for a walk etc it often feels like the last thing in the world I want to do but I know if I give up now then doing nothing will become my habit and then it's a downwards spiral as it's even harder to make the effort. I'm concentrating on doing loads more stretching as I know that when I flair my muscles go even tighter (if that's possible) and taking my vitamins which I've bee very remiss at doing recently - (managing fibro feels like a full time job sometimes - lol!) and the beauty of this board is that we are all each others conscience/support mechanism - fibro would be that much more difficult to manage without everyone here x
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Old 04-16-2010, 09:50 AM   #7
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Re: Please Help: Possible FM OR Medical Mystery

First, I just wanted to say thanks for responding. No, I haven't seen a rheumotologist yet .. I'll probably get to see one, because I've seen every other type of doctor .. I wanted to give ya'll an update on my doctor appointment I had on Thursday with the neurosurgeon.

To add to the list of tests; they took several x-ray images of my lumbar, thoracic, and cervical spine. The doctor said that after reviewing the MRI's, x-rays, and the physical exam that there is nothing mechanically wrong. He explained further; that my symptoms does not follow any clear path and that the images simply shows that nothing is wrong in the spine. He said that he is not saying that something isn't wrong, but it bascially means that they are unable to see anything in my spine.

He switched my medication from Neurontin to Lyrica 150 mg twice a day. The doctor said that if I have a positve reduction of pain from the Lyrica then it will add to the factors leaning toward FM. He feels that the pain is VERY similar to FM and he recommended that I be referred to see a Endocrinologist to see if they can research and do more tests to see if they are able to figure out why my testosterone level is so low.

So, there we are .. I haven't receive a FIRM diagnosis yet, but hopefully getting closer.
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Old 04-16-2010, 10:59 AM   #8
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Re: Please Help: Possible FM OR Medical Mystery

So, F15, are you currently getting any type of exercise? I walk and stretch and find these to be extremely helpful in managing FM's pain symptoms. I'm on Lyrica too, and it is a good drug, but its terribly constipating. Get something like a laxative tea, or stewed prunes to help you or it can do damage to your gall bladder, I've been told. See my recent thread on Lyrica for more info. And, welcome to the Fibro Board.

 
Old 04-16-2010, 01:12 PM   #9
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Re: Please Help: Possible FM OR Medical Mystery

F150STX, ditto what Cwooten says, especially on not letting a day go by with constipation while on Lyrica -- on **********, it documents what I experienced -- a healthy gall bladder that ended up hardened and filled with stones and severe pelvic pain. If the Lyrica people could work out those quirks... wow, what a medicine!

Also, I WOULD NOT WOULD NOT WOULD NOT let the doctor leave it at an X-ray!!! You're in pain and taking serious meds and still no help. Obviously there has to be a reason. They need to step it up in the checking-it-out department--not just hand you more meds. Ask for an MRI -- go over all the stuff you've tried and ask for an MRI. I suffered through a year of the physical terrorist after my car accident simply because the x-rays could not show what an MRI showed clearly -- a narrow spinal canal and three discs smashed up to the cord. Currently, I'm recovering from an injury/surgery that has messed with my ribs awful -- just did an MRI, and it clearly shows a bone spur and desiccation in that area--stuff not seen on an X-ray. You could have some congenital defect -- you don't have to have had an accident or injury.

P.S. Sweetlife... day two at the gym

 
Old 04-16-2010, 03:22 PM   #10
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Re: Please Help: Possible FM OR Medical Mystery

I have a tread-mill that I walk on for as long as I can and do that a few times a week. Also, I have had 4 MRI's .. Brain, Cervical, Thoracic, & Lumbar .. And yet they say there is nothing mechanically wrong .. The medication that I am currently taking TYPICALLY keeps my pain level between a 3 (managable pain but don't really feel like doing much but I do it anyways) - 5 (not managable and I only do what I have to do), but on bad days or days I simply over do it it'll spike to 7-8 (in bed not moving unless I gotta) .. ALSO, I basically use miralax every other day and milk of magnesia during bad times. Thanks for the info about Lyrica .. What milligrams are you all on before you saw a huge difference? I'm on 150 twice a day.
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Old 04-16-2010, 11:07 PM   #11
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Re: Please Help: Possible FM OR Medical Mystery

F150STX - have you tried pilates/swimming - doing a variety of different exercise is really beneficial - plus LOADS of stretching
Baserockermom - I'm impressed - keep it going - getting strted again is the hardest part so you're over that hurdle
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Old 04-17-2010, 12:09 PM   #12
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Re: Please Help: Possible FM OR Medical Mystery

Absolutely sounds like some of my symptoms. I have to clarify that I do have FMS but also Lupus. It appears that you had a MS workup seeing the MRI history. Also neck problems can be a cause of some of the spinal, shoulder pain you describe. I know I have had fusion of 3 discs and I know well the burning aching shoulder syndrome. I also see the dry eyes can be seen in Sjogren's Syndrome which many times accompanies FMS and Lupus. You say that you have had bloodwork that ruled out Lupus, but did you see a Rheumatologist for that clarification? I know that I went to the third one before having the proper testing and evaluation for Lupus. I only mention as I do think the Lupus meds have helped with a number of my FMS complaints. I also have had episodes of the sleep attacks, some which I related to medication, others to lack of refreshing sleep. I also mention that there are several different types of sleep studies that can be ordered. I had my first through a pulmonary specialist that led to a RLS diagnosis, but was later evaluated by a Neurological Sleep Specialist who did a more thorough, extensive sleep study that used more sophisticated monitors that showed that I indeed was waking every 3-4 minutes all night long. I was prescribed wiith a CPAP and I do rest much better now than I was before, even though I was taking meds to sleep which I now can leave off. You may want to read some of my earlier posts on this by doing a search. I actually went almost 2 years without driving as my sleep attacks would come on suddenly with little or no warning. Thank goodness that is a thing of my past and I trust myself to drive once more. I just wanted to agree that I think pursuing the FMS is great advice. Rest assured, it may be somewhat frustrating to go to a number of doctors, but one can find one that is knowledgeable in the diagnostics and meds for treatment. I would pursue, and if you have not seen a Rheumatologist, I would seek out their wisdom.

 
Old 04-21-2010, 11:42 AM   #13
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Re: Please Help: Possible FM OR Medical Mystery

The 300 mg of Lyrica has helped a lot. After taking it for a few days I feel as if a cloud has been lifted from over my eyes. My mental state seems to be close to what it was before all this started. The Lyrica is keeping the burning pain I feel between my shoulders and in my low back / hips / buttocks, but I still have pretty bad stabbing pains between the shoulder blades and the same pain in my lower back / hips.

Does it take a while for it to build up in your system before you see MAJOR changes to your pain level?

I have not seen a Rheum yet, but will seriously consider it .. When my PCP did the blood work they tested for Lupus, Thyroid, Rheum Arthritis, and he said pretty much everything else he could test, but all came back negative EXCEPT the findings that I had EXTREMELY low testosterone.

The issues I have with sleep during the day happens sporadically. I will just be watching TV, talking to my wife, driving, ect and it will be as if my eyes are VERY tired, heavy, and seems to go "cross-eyed". I fight to keep my eyes open (and in most cases I stay awake), but there has been times where I simply fall asleep. There has been two times where I fell asleep in the shower. One time I actually fell down and hit my head and the other time I caught myself. Most recently, my wife found me lying in our office / hallway (face down) asleep. She said it took her physically nudging me to wake me up. Sadly, I was actually having a good dream (dreaming RARELY occurs). It doesn't matter how much sleep I get I still feel as if I never closed my eyes (which has happened a few times where I was awake for 24-48 hours). To help with the "falling asleep" during the day my Neurologist prescribed 250 mg of Nuvigil, which does help, but I still have episodes.

What stinks is when I do fall asleep my body twitches / jerks, which keep my wife awake, & sometimes the jerking will be severe enough that I am awoken. HOPEFULLY soon I will get a diagnosis ..
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Old 04-21-2010, 12:50 PM   #14
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Re: Please Help: Possible FM OR Medical Mystery

The falling asleep bit during the day could be narcolepsy (think that's what it's called) - I don't know much about it - I had a participant on one of my workshops once with it - he prewarned me in case it happened when he was with me and I thought he was bored!!
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Old 04-21-2010, 01:00 PM   #15
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Re: Please Help: Possible FM OR Medical Mystery

Yeah, my neuro said that he thinks I have a small case of it and that's why he prescribed the Nuvigil.
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