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Fibromyalgia or Ankylosing Spondylitis

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Old 01-28-2006, 05:04 PM   #16
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Ralinda30 HB User
Re: Fibromyalgia or Ankylosing Spondylitis

My husband for the last year has seen the same VA doctor with the exception of one time....He is a nice doctor, but I know the first few times I would go and speak my mind and tell him everything that was wrong with my husband..Now, I am told there is not enough room in the exam room for me...Go Figure, they didn't want to hear what the hell I had to say...They never call your A** back, and all he get's is enough time for him to refill his prescriptions...Mind you we go once a month...Now I am waiting until Feb, 27 to go see the neuro in Biloxi, since his doctor doesn't wan't to up his meds or change them with out the neuro's concent..Hello, isn't he the primary care doctor...When my husband is in pain and needs his meds increased, that is a crock of crap....He is a doctor there at the clinic, why should he have to wait to see a doctor 2 hrs away, when last time he went he never even had his records!!!!I hope all of y'all get the right treatment...I am so sick of seeing unknown etiology, find out why he was such a healthy man before Iraq now he sit's on the couch popping his pain pills, or is sleeping....What a great life after serving your country...I feel so sorry for everyone and there familys, we all suffer....Ralinda

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Old 01-29-2006, 10:41 PM   #17
Join Date: Sep 2004
Location: Mid-Atlantic USA
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ArcticTraveler HB User
Re: Fibromyalgia or Ankylosing Spondylitis

I've had a terrible few days. This throat problem was bad. I've been getting muscle spasms in my food pipe and in my throat below my adam's apple. This time, they wouldn't stop. For 48 hrs they just kept coming in waves. It exhausted me inside and out. I tried liquid antacid, pepcid pills, & even Gaviscon thinking it was reflux. I never had anything like this before until it started well over a month ago. But, it was something this weekend. I couldn't swallow half the time & even woke up choking once. Lot of pain involved too. Finally, since I could tell they were spasms, I sifted thru some old VA prescrips & took some muscle relaxers. I went sleep & when I got up,
the spasming had stopped, but It's sore in there. At least now, I can swallow a little bit better.

What the heck could this be? Do you other Fibro sufferers get spasms inside your body, like in your throat?

I'll try to pick up where we left off, but just to let you know, I'm wore out.

True. The VA writes the wrong stuff down often. One time, a VA "doc" insisted I had high BP & wanted me on meds. My BP is always normal. Well, she claimed that in the past, I had been to the VA when my BP was something like 180 over 160. Unless that's when I went there for kidney stones and was in pain, I think that's a typo.

What didn't you like about Neurontin?

These blocks that you speak of, is that what the VA wanted to do to me? The novocain injections into my trigger points?

Did you ever file for an ammendment to your records? If so, how did that go? Was it much hassle?

No blues, but the illness itself is exhausting and draining.

I've mentioned the "lesions" on my hands/forearms several times in the past. It all depends what "phase" they're in. The look like anything from dry skin to herpes to cancerous growths. They itch, hurt, burn, ooze, bleed, flake, & do all kinds of other things. Right now, they're still there, but they're down & in a "quiet" stage.

My "old lady" has the digestive problems, and migraines mostly more than some of the other things I mentioned. Come to think of it - night sweats. Like me, she gets a lot of night sweats. I've been getting night sweats for a long time.

I noticed that about the VA within the last couple years. Seems the primary care "doc" won't do anything but referrals and jot down the wrong stuff in the recs. Before, I could get meds or refills from the primary, now he won't do anything. He insists he has to refer me to the specialist for refills, dosage increases. They didn't act like that between '93 & '03.

Before the Gulf, I used to run 3 to 5 miles every other day in the Corps just for excercise. I used to ride a bike sometimes 12 miles daily (rather than drive around base). I used to do 3 to 4 mile formation runs during PT. I used to lift weights routinely. I could carry 90 pound cruise boxes aboard ship or to the helos single handedly. After the Gulf, everything slowly went down hill. By the late '90s, I used to at least do the 5k walks for the Cancer Society. I don't even do that anymore. Like I've said, if I get one minor task done per day, or one major one done per week, I'm doing good.

Old 01-30-2006, 07:15 PM   #18
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zephyrqueen HB User
Re: Fibromyalgia or Ankylosing Spondylitis

Artic Traveler,

I did file an amendment, wether or not it ever was amended.....I don't know.
I looked for it in my records but never found it. I was told, however it would be taken care of. Although you know as well as I do how that go in the VA system.
As far as the Neurontin, it didn't work for me. It did for a little while but then it stopped. By a little while, I'm talking about maybe 2 months at best. Just like most of the things they do for me, they are only temporary. That's the worst part. They work for a while then they stop. Also with the Gerd I can only take certain meds because of they upset my stomache. I found a really good one called Duloxetine for my Fibro but they decreased the dosage twice. Yet, it was still too much for my stomache to handle. Which stinks because I noticed a difference in my sore muscles.
The injections you are speaking of, I've had before. The one's which I'm talking about are totally different and are quite painful ! They are into the joint itself and I am not given any type of sedative at all. The first of which are called Florsocopes. They basically penitrate the skin with a 3.5in needle and then inject dye into the joint so they can see it on a monitor. Then while the needle is still there, they infiltrate that with Lidocaine and a steroid. Not fun at ALL! I've had a few of those into my sacroiliac joints. The spaces there are narrowing. Due to Osteopenia in my lumbar spine I can no longer recieve the steroid injections. I have been recievng Medial Branch Blocks. This is where they go in with a 3.5in needle and block off the nerves at certain levels. NO seditaves there either. ...or any fun. The last one I had was done bilaterally at my S1,2 and 3. Now I'm set up for March to have Radio Frequency Abligation. They go in and cauterize the nerves.
When all is said and done, I'm hoping to get my 100% this time around. I've been trying since 2001!!!! That's the least they can do for all the pain and suffering I have to go through every other month with just this crap! Not to mention the 7 EMG's.
My rep is also doing a board of corrections to go back and get my medical discharge change to medically retired. I should have to begin with.

Old 02-08-2006, 10:00 PM   #19
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curiousforever HB User
Re: Fibromyalgia or Ankylosing Spondylitis

Alot of what you've described sounds like my problems as well. My husband is active duty - but only went to Jordan once before the ar. I wonder if it's possible due to asbestos filled housing?

It's frustrating cause all they have found so far is peripheral neuropathy. But I'm not sure it would cause me to walk and talk like I'm drunk - or bounce off walls - or pass out when I stand up...or any of the twitches, the alien that tried to pop out of my calf, and junk like that.

Any advice? Docs at fort bragg let me live with moderately impinged ulnar nerves for 3 yrs with motrin and 2 vicoden a day - then sent my to psychaitry saying I was "dependant" on the 2 vicoden (pain is at a 8 24/7 and 2 vicoden will do what - drop it to a 6 maybe...and they accused me of hypochondriac....all with tests proving both elbows were bad.

We got sent to new duty station - and my first visit to new doc for pain pills was met with the doc saying "you know you can have surgery and fix this right?"

None of the others even offered it - and I would have jumped at the chance to fix it....

The doc here is pretty good - he believes me that something istn' right...but finding it...only the emg/nvc shows my nerves are demylinating - but the last one shows they are fine - yet they still hurt....and only my RF factor test came back slightly abnormal.

Any suggestions?

Sorry to hear the VA is treating you like that.

Old 02-09-2006, 10:26 PM   #20
Join Date: Feb 2006
Location: carolina
Posts: 1
DosDFX HB User
Re: Fibromyalgia or Ankylosing Spondylitis

Many believe Fibro and GWS are one in the same. I developed Fibro at the age of 17, and remained bed ridden for the most part my life until about age 26. Being male didnt much help my diagnosis either. I have nearly every documented symptom of GWS , yet ive never been part of any armed force branch like most of you. After a decade of struggle and pondering the "what if's" ive finally discovered that "theory" is your worst enemy. The more you wonder why, or look for answers the worse it gets, because it consumes you. Trust me i KNOW. Although its always healthy to talk about such issues, i think it would do alot of you good to learn how to accept it. Let me explain. GWS, Fibro, CMPS, CFS all (though may be different ailments) have the same trigger. Nervous reaction. Any type of stress or abnormality no matter how WILL not "can" trigger onset of your symptoms. For a long time i lived just like i know most of you do. Every second and every thought has something to do with your ailments. It affects everything you do, even your resitory rythm! Every thought of your ailments sends a signal from your brain to the area your thiniking of. In simpler terms, its very very easy to think yourself sick. Try to keep in mind, your not ill with some crazy unknown disease, your just like everyone else. You simply have a little more on your plate to deal with. The more normal you act, the more normal your going to get. Dont just tell yourself "im normal" for a couple days and come back to tell me im full of it. It takes time, but it does work. Ive also found that medication (although may help at first) accelerated my condition, and everyone ive counseled with it. Antidepressant medication in paticular seems to do the most damage. A doctor that puts you on something for a mental condition (due to GWS/Fibro) doesnt understand it, and probably doesnt have much understanding on chronic pain in general. Chronic pain causes the fatigue, restelessness, rage fits, and a number of other mental "inbalanes" . Control your fear/Stress = controls your sickness = controls your mental state = makes you live a normal life. Everytime you wake up stiff, or have pain, get fatigued, cant get your energy up ect your thinking [ oh, its my GWS/Fibro acting up] . STOP IT! Every person on earth has these sensations at some point. The difference is when you think these thoughts you actually enable them. Meditate on living as if you didnt have GWS or Fibro, and aside from a few problems due to weather change and uncontrolable events (such as a divorce or death in the family ect) , you will find that it eases off a little more each week or two until it becomes nearly non existant. I catch alot of ridicule for this little solution, but think of it this way. Try it, you got NOTHING to lose but your ailments! Ive come from a cripple to normal, and im not the only one. Hopefully, many of you will defeat this thing as well. Wake up to a brand new life tomorrow, God love you all

Old 02-11-2006, 03:51 AM   #21
Join Date: Sep 2004
Location: Mid-Atlantic USA
Posts: 72
ArcticTraveler HB User
Re: Fibromyalgia or Ankylosing Spondylitis

Then, this below (from the first posting of this thread) is in fact FM & not AS? Also considering the migraines & mixed headache types, malabsorption, muscle wasting/hardening, lung problems, skin lesions & sores, and the most recent conglomeration of symptoms like throat spasms, flushing, and widespread itching is fibromyalgia and the VA should be treating me for fibromyalgia and not even considering AS/seronegative spondyloarthropathy, Reiter's, Lupus, neuropathies, or any connective tissue diseases they've mentioned? Then that's what they need to start doing. After all, in 2001, the VA placed Fibromyalgia on the Gulf War presumptive service-connection list (as they did with ALS & they're trying to do with MS now) claiming that Gulf Veterans who served in '90-'91, develop this disorder more than non-deployed troops & the general population, and therefore can be granted s/c for it.

I was diagnosed with FM about 5 years ago. Prior to that, a couple doctors thought AS could be my problem. Most of my diagnoses are FM, while AS has only been noted a couple times, Seronegative Spondyloarthropathy twice, and Reiter's Syndrome once.

Any blood work revolving around arthritic conditions is either negative or within range. (RF neg, sed rate ok) Other blood work is basically ok. (CPK slightly elevated; red blood cells slightly low; PSA just at the upper limit, ALP elevated, ANA's once positive now neg.) DEXA scan of hip ok. Calcium levels ok. No evidence of joint inflammation although there is pain in my joints. Lyme test negative.

For the past 13-14 years, I've been getting:

- numbness/tingling in arms, upper back, legs, feet & hands
- widespread muscle twitches & spasms, even at rest
- pain & cramps in my calf muscles
- fatigue, tiredness
- night sweats
- painful swollen glands in neck, groin

Within the last decade (but mostly last 6 years), I've developed:

- sore & painful tendons, ligaments, and muscles, especially at the base of the muscles in my neck (front & back, top & bottom); upper forearms, lower triceps, groin (where the ends of my leg muscles meet the groin); lower back near the spine and where the hip bone is close to the surface on each side; outer-top of feet, and hands
- widespread stiffness of muscles (PT eval shows up to 50% loss of ROM)
- poor control of my lower right leg
- weakness in my wrists (drop things, can't carry much weight in one hand)
- clumsiness & awkwardness especially using tools with my hands, sometimes walking
- total exhaustion after performing heavy physical tasks to the point where I feel too exhausted to go to sleep
- occasionally, something causes my tongue to get stiff & painful making it hard to talk. (Maybe a swollen gland underneath?)

My muscles cramp up when being used. Hard chewing will cause muscles in my neck & under my tongue to cramp up; using hand tools cause my arms to stiffen & cramp up; even using the mouse too long on the computer will cause arm cramps. Sitting here typing this causes my neck, forearms, and hand muscles to hurt. Driving long distances causes my abs & obs to cramp & ache as well as my arms.

I get a lot of "knots" in my muscles (neck, shoulders, forearms, calfs).

Sometimes it feels as if my muscles are becoming too weak to support myself.

Anytime I work using my arms out-strecthed in front of me for a while, I develop pain in the middle of my back that combines with the numbness & tingling to create an odd sensation, mostly out towards the left of the spine along the ribs.

When I do physically demanding tasks, after a few hours I begin to stiffen up and then bigger pain comes. Then as soon as I stop my work, I'm done for a day or two. I can't move! I lay in pain & stiffness & exhaustion. It's taken me up to a 4 days to recuperate from mowing the lawn.

What used to take 1 hour to do, now takes 6. Now, I'm lucky if I get one minor task done a day, & one major task done a week.

Within the last 8 months, I've developed deep heavy pain in my hip, lower abdomen, lower back, & groin. If I bend over at the waist, I experience pain. It's uncomfortable to sit long, or even stand long. The doc ruled out the hip joint. It's not known yet where the pain is coming from. I have had kidney stones in the past. Possibly a pulled muscle? Possibly just the tendons, ligaments, & muscles in my hip hurting?

Maybe someone out there with FM, or AS can relate? What does all this sound like? FM, AS, both, or something else?

Old 02-13-2006, 12:31 PM   #22
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Posts: 164
zephyrqueen HB User
Re: Fibromyalgia or Ankylosing Spondylitis

Artic Traveler,
I must say that after reading your post. It sadens me because it reminds me so much of myself that it's scarey! The only problem on your list to include the labs that are not the same is the problem with the tongue. I don't have that. I have asked my docs about my red blood cell count that always seems to be low "every" time I have my blood work done. They just blow me off. My recent Parathyroid levels were low but were told it was nothing to be concerned about. Hmmmm...... I didn't see how low they were so I can't say.
I'm still having this anyoying cold arm and hand thing going on. It's driving me crazy! I did bring up the possibility of Thoracic Outlet Syndrome to my GP and to my Ortho doc. I told them I do have shoulder pain due to the tendenitis, osteoarthritis and a recent tear in the tendon now. However it doesn't explain the cold extremities. She is sending me in for EMG on both arms. I do have ulnar neuropathy on my left but never had any study on the right arm. Sometimes, I think you have to stay one step ahead of the game...or should I say ahead of them. They injected my shoulder last Fri. and after I got home it got so bad!!! I litterally hadn't felt that kind of pain in my LIFE!! It felt as if someone was driving a stake through my deltoid and someone was clamping down on my tricep...all the way down to my forearm. IT was making my hand throb. It was also burning as well. It aggitated my neuropathy. I had to take an Oxycontin and a Valume. Even then the pain level was so HIGH , I could barely manage to fall asleep.
I think it's amazing that the govt. still tries to deny that anything took place over there. I came in at the tail end of the happenings in Somalia. I litterally watched in horror as that Pilot was drug through the street on national T.V.
I will NEVER forget that as long as I live. I was on leave at that time. Soldier's give their lives for causes like that. Then get lost amoung the system of the uncaring. ...the VA. That is a crime!!!!
I hope you are having a better day pain wise.
Best reguards,

Old 03-17-2006, 09:40 PM   #23
Join Date: Sep 2004
Location: Mid-Atlantic USA
Posts: 72
ArcticTraveler HB User
Re: Fibromyalgia or Ankylosing Spondylitis


It's been a while.

Wanted to ask you questions.

Does it seem to you that your illness waxes & wanes, manifesting new symptoms from time to time on top of what you already have, then plateaus only for you to be hit with some new heavier symptoms that follow the same pattern? ~or~ Does it seem like it's just been the same, but slowly progresses & worsens?

I've been having a rough time. Lots of pain in my hands, wrists, forearms. Still having the flushing skin, throat "spasms", and it seems my skin overall is headed downhill. Migraine after migraine too.

One day, I had a really bad combination headache, so I got my spouse to rub my neck as she's done before. She was rubbing over the spine in my neck. Then, my skin started burning. Then, she sees that the skin where she had been rubbing disintegrated and left a raw spot the size of the palm of your hand. Never had that happen before. It scabbed over a few days later. My skin is falling apart. It just doesnít look healthy all over.

You're lucky you get pain meds. I had to fight with the VA to get a narcotic when I had 2 kidney stones lodged in each ureter. They were gonna give me Motrin. Took a four hour fight at the VA directorís office (with the stones still in there) to get a real pain killer. Problem is, any narcotic ever given to me makes me vomit profusely. I don't really like them, but I know they kill pain.

Last edited by ArcticTraveler; 03-17-2006 at 09:46 PM.

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