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?
Last edited by ArcticTraveler; 05-30-2005 at 02:21 AM.
If you read all these problems I have, don't forget to throw in the numerous migraines, GERD, asthma, IBS, and whatever else I forgot. Pleurisy from time-to-time, and the skin condition.
You probably think I'm kidding. This is for real. My spouse has watched me fall apart the last 13 or so years. She's been to the VA with me to insist on better care. She (and my family) has seen the changes in my health although they really don't understand it. I had always been active & they assume that I should still be the energizer rabbit (even when I lost that 90 pounds and was basically a skeleton).
Anyway, newest weird oddities is a big problem swallowing with a lot of pain around my adam's apple & below it. Sometimes the food won't go down & it hurts like heck.
At about the same time this started, I developed some kind of flushing skin problem & itching all over. (I'll scratch until I bleed or wheals will show up). Now I'm getting these black & blue spots on my legs. I don't know if it's from scratching or what.
All my other symptoms are still there.
I did see on the other thread you wrote of giving back-rubs. No good for me to do to my spouse. My hands and forearms cramp up within minutes.
It's something you changed your mind that I should not hot tub. When the VA brought up me going to swim therapy, I rejected the idea mainly because I have open wounds on my hands/forearms. They wanted me to go to the YMCA. I don't care if there is chlorine in the water. They need to treat my lesions/skin condition before I climb into a chlorinated public pool.
Really it's useless. In 2001, I had about 15 VA appointments for the year. Now, since the new war started, I'm down to one per year. Just so they can save money, I guess.
Anyway, you said you're familiar with Lupus? What's this sound like? FM, AS, SLE, GWS?
Hello there. I've posted in GWS or FMS as well? I'm a vet myself. I have been diagnosed with FM back in 96 but have been showing signs of Anklyosing Spondlyitis as well. To include Spondylosis in the neck. I have everything but the anklyosing in the hips. Even though my sacroiliac joint spaces are narrowing. I have problems with the SI joints all the time. I'm getting ready for Radio frequency abligation right now. I was getting floroscopes and medial branch blocks. I too am HLA-B27 pos and ANA pos. All my findings are right on with yours!
The only thing that baffles me is that I was never in the Gulf. However my ex was. I was in Germany for 2yrs and did take care of patients in our hospital that came from several places. Such as Croatia, Bosnia, Surbia, and Turkey to name a few. They were camped out in our Gym when I got there. It was right after the black hawk down incident. It's not like they quarintened the gym either.
I too suffer from everything you mentioned. As well as peripherial neuropathies, neuralgias, gerd, left ulnar neuropathy and nerve degeneration in my neck at the C-6/7 with axonal neurapothy. I am also eaten up with DDD and Osteo Arthritis. I'm only 36 but have the back of a 60y/o. I also have Osteopenia in my lower lumbar which is near Osteoporis state. I tested borlerline for Lupus while on active duty back in 97. I haven't been retested. The DDD in my L-5 is descitated to the point of total disc replacement for me this comming year. Also shoulder scope for OA as well.
Has anyone ever ran a brain MRI to check for lesions? This would rule out Multiple Sclerosis. I already had that done too. I think my FM is a misdiagnosis. If you get a chance look at my postings under "vet looking for answers, help". Please keep me in the loop. I'm am desperately searching for answers too.... and still fighting the DAV for my 100%. I have 80% now.
I still think I have AS and posted questions in Arthritis group about this as well. I hope tomorrow is a better one for you.
How about peripheral neuropathy, or als? Has anyone ever mentioned any of this to you?
The only mention of neuropathies the VA has ever made was "left thoracic mononeuropathies of unknown origin."
I know Gulf Vets are more prone to ALS, but I've never heard any mention of that as a possible diagnosis in my VA med recs. I was given an EMG (I think that's what they call the test where they stick all the needles in you). They only did one arm & one leg. This was because one neurologist thought I had cataplexy. This is in regard to the weak wrist, dropping things, and what seemed to be momentary lapses of feeling/control in the one hand and my lower leg. The other neurologist became outraged that the other "doc" thought it was cataplexy. This mean neurologist is only interested in my migraines and every time I visit, I'm asked the same questions about when my migraines started and how often I get them. This is after answering the same questions over & over after 12-years, even though I'm service-connected for the migraines.
The Following User Says Thank You to ArcticTraveler For This Useful Post: junckman (06-06-2012)
I had a positive ANA for a while, now it's negative. I'm familiar with the HLA-B27. The VA has tested me for HLA-B27 numerous times. I have read that although one may have a positive HLA-B27 test, it doesn't necessarily mean that person has Ankylosing Spondylitis. Yes, the majority of positives do have AS, but from numerous articles I've read, the decision to make the diagnosis doesn't stand on that bloodwork alone.
The only thing that baffles me is that I was never in the Gulf. However my ex was. I was in Germany for 2yrs and did take care of patients in our hospital that came from several places. Such as Croatia, Bosnia, Surbia, and Turkey to name a few.
I used to work with a guy who was prior-USAF. He wasn't in the Gulf. I noticed he used the same types of inhalers to treat the same type of lung problems I had and I asked him about it. He suffered from pleurisy attacks & asthma. He had a hard time breathing. His job during the Gulf War was working at the Dover AFB aiding in identifying over 390 bodies that returned from the Gulf War. Yet another veteran who wasn't there, but developed illness. But, he was exposed to the Gulf via the bodies.
If you refer to my post # 10 , on the Gulf War Ailments thread, you'll see that I became violently ill after opening up my gear long after I returned from the Gulf. Another reason that leads me to believe something bad was in the air over there.
As far as others I know of who weren’t in the Gulf but became ill, I ran into a Bosnia War Vet in the VA one day. He said he had repeated problems with his throat after he came back. Sometimes he couldn’t swallow and his glands were always swollen & painful. He said the VA couldn’t find anything wrong with him although he had these problems. He said he ran fevers often, but yet the VA told him there was no infection. The VA would refer him to the psych-side of the house, and the psych-side would refer him back to medical.
Has anyone ever ran a brain MRI to check for lesions? This would rule out Multiple Sclerosis.
About 6 years ago, I started seeing bright dots in one eye. (I still see them). I went to a private eye doctor & he thought it may be MS after hearing my other symptoms. He sent me to a private ophthalmologist. In the meantime, the VA neuro clinic decided to test me. They did an EEG, and found nothing. They wrote my spots off as "floaters". They're not floaters. I know what floaters are.
The private ophthalmologist diagnosed me with ocular migraine. At the same time I switched to seeing a private neuro doc and he agreed with the ocular migraine, but also logged down "possible collagen vascular disease." I couldn't keep going to the private neuro, so I wound up back at the VA continuing to answer the same questions about headaches.
Arctic, My husband also suffers from daily migrains..He did have an MRI and has a lesion on his brain of unknown etiology....That is what everything the army and va have said about him....His ventricals are also enlarged....He has not had an MRI know in almost 1 1/2 yrs...I have asked the va several times to do one, with no luck...He was lucky enough to go see the neuro in biloxi, but of course he had no medical records for him, so what a waste of a trip.....Good luck to you, Ralinda
Well...Artic Travelr, it appears that you and I are in the same boat. As well as many of the other vets. It's like a never ending circle. Everytime I go to the VA I wind up seeing a different doctor because the appointments are so far out. Then I have to wind up telling my whole sorted story all over again. It just never ends.
My ex was on the front lines in Iraq in a forward surgical fast team. So, who knows what he was exposed to. Or myself for that matter. I did the laundry and also used some of his gear too. We borrowed each others stuff a lot.
I just know that I was NEVER a sick a day in my life until being over in Germany.
I too suffer with Migraines. After 8yrs, I'm lucky that mine are somewhat under control with Topamax now and Imitrex injections (which I carry in my purse). It was to the point of 3-4 a week and several trips to the ER for shots of Phenegran and Demeral. I finally told my doc I NEEDED to see Neuro. I could NOT function like this anymore. That' rediculous for ANYONE to live that way. Mine are also vascular in nature. The other side of the coin is that my nerve degeneration in my C-spine causes me tensions headaches as well. That in iteslf can trigger a migraine. When that happens, I am double whammied with a tension/migaine at the same time. Thus causing a trip to the local ER. It would litterally bring a man to tears!!!
Thanks so much for the info you gave me. I do realize what you are saying about the diagnosis on the bloodwork for AS. It's just that my Rheumo has just been whishwashy in my diagnosis. He told me one day that he didn't want to say yes and he didn't want to say no. What the h*** was that supposed to mean? Plus my SI joint spaces are narrowing. Plus the spondylosis in my neck. Anyway.... I hope you can get some relief for your migraines/vascular headaches soon. I've been on several prophalaxis and meds in the past. To include Botox. Topomax is the only thing I've found to work. Have you tried Depekote or Imitrex? I can't use Depekote because of allergic reaction or Imitrex because it's NOT strong enough. I just wish there were something I could do. Sigh.....
Good luck and I'll keep you in my thoughts.
I wanted to mention that my ex was in Dhahran when he was in the FAST team. He was an OR tech. I do remember him being treated by Dermatolagist for skin rashes while in Germany. Also he had memory loss and some male problems. He also took the nerve pills and some other stuff they had to take.
FYI..I was in Ge. in Feb. 94 through Nov. 96.
It all sounds the same. For me, my med records were paper thin until the pleurisy/sinus bradycardia attacks of Aug. '91. Now my records, half of which the VA hasn't given me copies of, are as thick as a big book.
I was on neurontin for migraine maintenance. Go to post #41, in Gulf War Ailments and you'll see how many meds I was taking at one time.
I've stopped everything. Now, everything is expired. Just the inhalers & ointments are active. I handle my migraines like I did in the early '90s. Dark room & quiet. If you don't see posts from me for a time, you'll know where I'm at.
My migraines are interspersed with tension headaches. I kid you not. I sometimes can have 5, 6, or more migraines a month & too many tension headaches to count. I also get cluster headaches. There’s really really BIG headaches, I call my "Gulf War headaches." They are worse than migraines.
In the early days, I used to go to the VA ER until the nurse their told me not to come in for them anymore. She referred me to primary care which said they would work on each symptom. That was 11 years ago, and they really never got any further than where I'm at today.
I too have all kinds of spinal problems, top to bottom. I even had (still have?) a "growth" wrapped around my spinal cord which I was told would never do anything. The VA also claims I have a "lesion" on my pelvis which wouldn't grow. That's why it has grown about 5 cm. They claim it's nothing to worry about. (“Lesion” on the pelvis?”)
If I were to insist on extra testing or demand they look into something, I know exactly what they’d do. They’d most likely write in my records that I’m anxious, or they’d write derogatory remarks. One time I showed the VA “doc” my twitching muscles. On this day, it was my upper arms. You couldn’t miss them. She stared at my arm & said nothing. Later, when I got copies of my recs, she had put in there, “patient claims he has muscle spasms & twitching, but exam shows none evident.” “I claim”, she says. These people must be trained in skepticism, because that’s what they’re best at.
Right now, because of the new war, VA care is practically nill. Even a relative of mine who is sick from Agent Orange & diabetes, was told to only come in yearly from now on.
I'm sorry, but sometimes I have to be frank. How in the heck can they keep track of someone's illness on a yearly basis? I had my CT scan done last June, I won't find out the results until this coming summer unless I go and get the results and decipher them myself. What kind of healthcare is this? The gov't wants to make the veterans, but not help them. People in this country need to wake up already. If our gov't doesn't give the care they promised to the veterans, what makes anyone think they really support the troops the way the say they do? If they can’t respect the people who sacrificed for the country in a time of war, do you think they care about those who didn’t?
Artic Traveler, I agree with you 100%!!! The soldiers give so much and get so little in return from the VA. They are so bogged down with 1,000's of vets that they over book. Also they just don't seem to care. That is how I feel.
I too know exactly what you are talking about. I keep getting shoved off from one doc to the next. When one doc gets stumped on what's going on and doesn't know what my illness is, he/she dumps it off onto someone else's lap. How are we suposed to get the proper care when we can't see a stable doctor? It's like being on Active duty and going to sick call.
I too get the cluster headaches that you speak of. My migraines were about 6 a month and then got worse. They got worse in durration and frequency. I had migraines for several years but these were different. Much worse!!! I told the VA doc that I couldn't keep going to the ER for quick fixes. This was NOT a form of treatment.
I know what you mean about the "anxious" being in your records. That is ALL in my records. It's because I get so frustrated with them. Being a medic and working in the hosp. for close to 7yrs. I did pick up some knowledge along the way. So, if I see something wrong or if I disagree with something they are doing, them I'm going to call them on it. I'm not some bumbling idiot that they make me out to be. Or someone who is just going to lay there and play stupid. Well, I got my records one day and my Rheumo put in my records , "Patient using complicated medical terms". Well, I was diagnosed with Fibro over 7yrs prior to seeing him. So EXCUSE the hell out of me for knowing something about my own illness. It's like they want to keep us dumb. I've also told them that I don't think it's Fibro. I also told a doc that, I think that Fibro is just a term they use to losely because they can't get to the source of the problem"! You can only imagine, he had no comment for that one. Hey, I call it like I see it. I have also seen the "I claim" in my records. I sware they are blind. They NEVER put down exactly what you said.
I actually had a Psychologist in Houston put down in my records " patient manipulative and cunning. Here trying to tell her poor me story". I was blown away at that"! I literally called back to that office and demanded to speak to her supervisor. I demanded an adendum to my records! I told her supervisor that was VERY UNPROFESSIONAL of her!!!
I have small bilatteral asymetrial effusions on my hips. Don't know where they came from. Never had them before. Also have an efusion on my left knee, which bothers me. I also have a Hemangeomia on my L-3 vertebra. It hurts quite a bit. Not sure the size of it. I was told that it doesn't cause my pain. That's bs because that is one of the symptoms. It can also bleed into the spine. It's a vascular mass on the vertabra. No one has ever did a follow up on it.
So yes, I think our care is very poor at best. A lot of people have told me that I'm lucky that I have free medical care. I tell them, that's true.....but at what cost?
How are we supposed to get the proper care when we can't see a stable doctor? TRUE!
My migraines were about 6 a month and then got worse. They got worse in duration and frequency. I had migraines for several years but these were different. Much worse!!! I NOTICED SAME CHANGE IN MINE AROUND 1999/2000.
They NEVER put down exactly what you said.TRUE!
It was suggested to me back in 1994/95 by someone of great importance, to take a small voice activated tape recorder to VA appts. I guess concealing it in a coat and turning it on when going in to see the "doctor". Making sure the voice activation is on for the sensitive setting & making sure it's in a pocket closest to the "doc", even if hanging the coat up. Making sure there is a longest length tape one can find & fresh batteries. Something like that.
I guess, it's good to refer to the tape regarding conversations with the “doctor” and then transcribe them to submit bits & pieces in complaints to Congress or wherever.
Keep in mind, tape recording is not admissible in courts, and lawyers get mad if you do tape someone because I believe you're supposed to inform the person you're taping (unless you're the NSA or the current administration).
Another thing to do, is always go to the appointment with someone as a witness. I've taken my spouse. When she's with me, the "doctors" act differently as if they're actually interested in what I'm saying. They have to. There’s a witness.
As far as amending VA records, there is a law in the CFR38 in regards to proper procedures for doing so. For those that don't know, you are allowed to petition for an amendment to your records if incorrect or derogatory remarks have been logged down.
A lot of people have told me that I'm lucky that I have free medical care. I GUESS WE GET WHAT WE PAY FOR.
You are so lucky you have a spouse to take along when she is free. Unfortunately, I don't have that option...yet. My boyfriend is still in. As of this May he will be putting in his retiremnent paperwork, after 26 long years.
He has gone with me on a few appointments and I have noticed a difference. Could be too that he was still in uniform because he was comming from work. I told him I like him to come with me when he can because I get treated better and I have a witness if something isn't done right. I think sometimes he doesn't believe that I get treated different when he isn't there. He's in for a rude awaking when he gets out. He sees what I go through on a daily basis....or have been going through for several years now for that matter.
It's like my Rheumo almost didn't want him in the room with me. My Pain Doc didn't care at all. I had to have a ride for my procedures there. I get Medial Branch blocks done into my Sacroiliac Joints. They did them bilaterally last time and blocked off the nerves at my S1,2 and 3. My sacrum, butt and the bottom of my right foot was numb for the rest of the day. That's why I have to have a driver.
I have heard of the tape recorder myself and have actually thought of doing that. As you said , it's admissible in court. However what about our shotty medical records? They are incomplete, inadiquete and poorly written. You and I both agreed , they NEVER write down what we say. Plus they never get things right. I even had them put down the wrong weight and meds in mine. One time the doc called me back to make sure I wasn't going on a diet to lose weight because the doc had put in my records that I needed to lose weight. I only weigh 105...HELLO!!! Also because of constant nausea and the other meds I dropped to under 103. Which I also brought up. They had my weight in my records at 210! You think they would be held accountable for stuff like that. I even threatened one doc about calling the medical liscening board on her. She was so bad!!!!
Have you gotten any relief from your migraines or cluster headaches? The Neurologist has me on Topamax. I had been on several meds to get them under control....to long to list. I was on Nuerontin (Gabapentin) as well but didn't like it. Having Gerd doesn't allow me to take to many meds. A lot of things upset my stomache. As I'm sure you're in the same boat. It's the same way for me with my headaches. I just have to ride them out. That's the only thing I can do. Unless I can't take it and have to go to the ER. Sometimes it will last for 4 days at a wack with my neck pain. Sometimes I'll put an icepack to the back of my head and that will numb it some....till it wears off again. Believe me, I know what you are talking about. I get a tension on top of my migraine and sometimes a cluster as well. ..to top it off. I just want to cry!!!! Although that only makes matters worse! I found that out.
Hey I made it to this board....Ya know, I had actually looked for you here on these boards the other day, but, I couldn't find any of your postings, hmmm! Maybe doing "search" was a good thing, after all!
Anyhow, yesterday, I had the most painful backbone problemo'.It was so painful after sitting on a computer chair(the uncomfy ones) that I could barely stand up, let alone sit.I had to use a heating pad all of the rest of the night! I hurt almost as bad as I did, after I had gotten out of the hospital with gall stone surgery! I couldn't walk, or sit very well! It sure does take a lot out of you, when you go thru surgery! (but it also depends on the type of surgery as well!)
Well, then, as you were saying....you are having sores on your skin? DO they bleed, or are they open sores all of the time, and do they sting alot?
I am just wondering what they feel like to you....
My fiance' was in the Gulf war...but, he wasn't actually in the war fighting, with all of you, although, he does sympathize with you all.He does know people that have been there,and to Vietnam as well.He is always complaining bitterly...maybe this is more related to an age factor...at least sometimes he uses his age to make it seem like he's "over the hill",and it's "too late" for him to think "positive" about his illnesses, etc.I keep telling him, that if he would just "chill out" some, and try to think more positively, he would have a better life....(there are just times when he gets wayyyy to serious for me.)...I don't feel like the way that he does...it only happens if I am not taking certain meds(which he himself ,just doesn't understand).He does understand the joints and pain and tiredness, in me, because we have similar aches and pains, however ,he doesn't understand my "depression" side that I have.Whenever I run out of meds(and lately, I have been trying really, really hard to be more responsible about remembering to get my meds ahead of time),but, when I do not, I end up with severe crying jags, negative thinking,and the most extreme blues! He doesn't understand this! I do know, that Lupus, and Fibro' patients can be prone to depression as well. For me, it can get seriously bad! I just do not want to go back to that person, that I once used to be, when I was NOT on those wonderful medications! They saved my life, literally.
My doctors said, that eventually they would have to ween me off of them....but, I don't really think that that will help me. What helps me best, is to be taking the meds.....I am able to think clearly,and "normally"...When I am not on my meds, I get absolutely horrifying dreams,and I am more than just blue! Does anyone know what I am talking about? Artic Traveler, have you gotten the blues or a depression from all of this suffering that you are going thru,and what have you done for extra help?