Anyone heard of this?

[Crankin]

I have never believed that I really have Fibromyalgia. After a year and worsening symptoms of groin, leg, pain etc. I am getting desperate. It's obvious that it's related to riding and now I have it doing other sports. But mostly, riding. I have stayed away from the web and medical stuff, because it made me crazy last fall, but I just typed in groin pain and sports medicine and came up with this; I also read a few more articles on the same thing.
This describes exactly what I have. I am totally freaked out, but I am calling Brigham and Woman's cardiovascular center tomorrow.






http://sportsmedicine.about.com/od/bicyclinginjuries/a/Arteriopathy.htm

[Crankin]

OK, I'll try again...
external iliac arteriopathy.
Anyone know anything about this, particularly the treatment options?

[redrhodie]

{{{{{crankin}}}}} I haven't heard of it, but I don't think you should freak out. Staying calm is your best bet.

If this is not what you have, you will have made yourself worry for no reason. If it is what you have, you will finally know the answer to your pain, and can decide what to do next. It sounds like the athletes who had surgery were satisfied with the results. That's a good thing.

[Cataboo]

I have never believed that I really have Fibromyalgia. After a year and worsening symptoms of groin, leg, pain etc. I am getting desperate. It's obvious that it's related to riding and now I have it doing other sports. But mostly, riding. I have stayed away from the web and medical stuff, because it made me crazy last fall, but I just typed in groin pain and sports medicine and came up with this; I also read a few more articles on the same thing.
This describes exactly what I have. I am totally freaked out, but I am calling Brigham and Woman's cardiovascular center tomorrow.

http://sportsmedicine.about.com/od/bicyclinginjuries/a/Arteriopathy.htm

I had a friend with fibromyalgia (male) who didn't take medication for his fibro, he took a bunch of different supplements - the one that he thought really made a difference was taurine... and lots of exercise helped.

[Grog]

*Big hug*

Good luck in seeking a better diagnosis and some medical attention, I hope you find a good doctor out there.

[Crankin]

Yep, I already have an appointment with the head of endovascular surgery at the Brigham. Thank G-d I live in a place that has the cream of the crop medical facilities. It helped that I have been there before, so it was easy to make an appointment.
Exercise is making this worse; but in very specific ways. I don't feel "sick" like I did last fall. In retrospect, my symptoms are very related to the cycling season. I was fine last January until the end of March... When I tried to explain what happens when I ride, i was dismissed by everyone. The other things I have had, besides the weakness and deteriorating performance, such as groin and stomach pain are directly related to this syndrome and are often misdiagnosed with all the diseases that everyone thought I had... in addition to being crazy! Sure, I was crazy, because no one believed me and then I got even more upset when I was told to "just ride 5 miles!" When I called to make the appointment and I asked for someone who had worked with endurance athletes, the receptionist didn't flinch and knew exactly what I was talking about. If nothing else, I will be reassured. My concern now is that I am having pain at rest, not just during high level cardio.
I guess my main concerns are: 1) I am allergic to IV contrast dye, which will make diagnosis difficult, although the first test does not involve dye, and 2) I am petrified of surgery.. not the surgery, but the anesthesia. I have weird allergic reactions to lots of things and I've only been put under once. I know 2 people who died from allergic reactions to anesthesia.
I am not afraid of medical stuff, per se, but these two things sort of weigh on my mind.
If I really do have Fibromyalgia, I wouldn't mind trying supplements, but there's a lot of crap out there on the Internet about this, and in my mind they're all schemes. I've been doing acupuncture for about a year; it did help my anxiety last fall/winter, but I am not sure it's helped the pain. I did PT for 6 months and it helped a bit, but it didn't make anything go away.

[Cataboo]

I could look around for references - but my friend had decided to start taking taurine after reading a scientific paper saying that it boosted circulation in smokers. I know his muscles had a tendancy to lock/tighten up, if he didn't exercise often to keep them flexible. So while exercise was painful, it was less painful than the alternative - because he was prone to tearing muscles without it. He did have crohn's disease as well, and pretty tightly regulated his diet to stuff that didn't make the crohn's flare up. They did eventually diagnose him with lymphoma, and after treatment for that the fibromyalgia symptoms eased up a bit.

The problem with fibromyalgia is that it's sort of this hodgepodge of symptoms that doctors are throwing together as one disease - and I think that probably it's several diseases that they don't really understand that they're lumping together. So I couldn't really say what helped his fibro is necessarily going to help your fibro, and it's been a while since I've looked into it.

So definitely take any info that you find on the internet with a grain of salt, I wouldn't buy anyone whose trying to sell magic make you better fibro pills, but if specific supplements make sense to you and working for you after taking them - add them. His supplements tended to be ones that boosted circulation. He didn't take sleeping pills or muscle relaxants like a lot of fibro patients do.

There is a supplement that's supposed to be a natural muscle relaxant that helped with the pain - valerian. You can get it as a pill or a tea. My sister is a teeth grinder, and she says that drinking a cup of the tea nightly seems to stop her from clenching her teeth & grinding it.

Good luck with your appointments. Feel free to disregard anything I said that seems nutty.

[Triskeliongirl]

Let us know how you make out at your doctors visit. I have no clue if this is what you have, but I can tell you that athletic injuries are often misdiagnosed by folks without experience dealing with athletes. I feel strange using that word, athlete, since to me an athlete is a pro like Alberto Contador or Michael Phelps. But, compared to the sendentary average american we are actually quite athletic.

I even had a couple physical therapists refuse to work on me, insisting I had fibromyalgia when it turned out it was the effects of trying to cycle with a 3 cm LLD which had really tightened up my SI joint. The good thing was they emphasized I wasn't normal and needed to be evaluated by an orthopod which was the first step in getting the problem resolved. He prescribed a very specific PT for my problem, along with getting fitted for a custom crank set and shoe inserts, which has made all the difference in the world.

[Crankin]

Thanks, Trisk. I am trying to keep busy, but the semester is coming to an end, my papers are done and I am thinking mostly that if I have to have surgery, will I be OK to start school again on Jan. 26. From the reading I have done, the recovery is fairly quick, despite the fact this is invasive, but I tend to heal quickly. I hope my age isn't a factor in deciding what to do; most of the other people who have had this are young, although a few in their 40s and early 50s. It emphasizes that cyclists who ride thousands of hours a week get this, but I think you could have a certain susceptibility to it, by virtue of how you are built, the geometry of your bike, and the length of your veins. It clearly started when I started riding over 2,000 miles a year. And I hear you with the fact that most medical professionals don't know what to do with athletes. I don't feel like one, either, but as my husband pointed out, we actually have more in common with Contador than the regular couch potato who can't fathom what we do on a regular ride. I even got a lot of cr*p from the doctors I've been going to, despite the fact that every single one of them (except my family doctor) is a cyclist who I see at the LBS fairly often. My rheumo. had the nerve to tell me he worried that " grad school would be too stressful for me!" What am I, a Victorian lady who is going to faint from hard work?
I haven't stopped exercising, because it's at the point where it doesn't matter if I am at rest or working out, it's hurting.
My appointment isn't until a week from Thursday, so I am just trying to get through until then.

[Triskeliongirl]

Well maybe you do need to cut down on your cycling until you are evaluated. What I read in that link said it will be exacerbated by continued cycling.

I know its hard to tell a cyclist to stay off the bike for a while, but I had to so that in order to let my SI joint heel, and then even longer while I had to wait for my custom crank set to be built. But the guy building me the crank set (who himself is a serious cyclist and a biomechanicist to the cycling stars) emphasized how important it was to stay off the bike. He reminded me that cycling with a normal crank set caused the problem, so how could I hope to heel until I had the modified one. When my bike was stolen, again I was ~6 weeks off the bike waiting for a new one to be made for the same reason. Its hard, but there are other ways to stay active.

In your case, riding until this is resolved will make it worse, so try some other activities that don't compress your iliac artery. I also imagine given the weather in boston right now, cycling isn't the best choice.

If you are anxious to get this over with while on semester break, call the doc's office and explain that, asking if you can be put on a cancellation list in case an appointment should open up at the last minute.

Good luck, and hang in there. While no one wants to find out they have a health problem, getting to the real route of a problem is the first step in getting in resolved. LIke my impaired glucose tolerance. Until I got that sorted out, I was gaining weight on 1200 cal a day! Or even my LLD. It also got to the point where it hurt all the time, not just on the bike, and people thought I was crazy.........

[Crankin]

I haven't ridden outside in almost a month, except for my 9 mile jaunt Saturday. I have been doing a couple of spin classes a week and walking/hiking, the elliptical trainer, and yoga.
This started to really get worse after I had a slight viral infection, when I always seem to come out and blossom with whatever weird medical thing I have. It was around then I had my last outdoor ride of any length. I guess I could lay off the spinning for a week until my appointment, but nothing seems to be resolving, even when I don't ride, like when I was away for Thanksgiving. I stopped taking Evista, which does have blood clots as a side effect, just to be careful, until I know something.

[eclectic]

Good luck and best wishes that you can get this resolved Crankin.
Undiagnosed medical problems are literally a pain to live w/

The following is in regards to the FMS not the arterial iliopathy

I was diagnosed w/ fibromyalgia 8 years ago after having horrible symptoms and doctoring in vain for 12 years. It was finally when I went to a psychiatrist because I thought I was depressed and losing my mind that he put all the symptoms together and sent me to a rheumatologist.
I am now on a very low, 5 mg, dose of cyclobenzaprine (flexerol) daily and that has been a miracle drug for me. I quit eating wheat products after discovering I was allergic to them (and oats), I built muscle through activity and weight lifting which I have found to be the most beneficial (but the most difficult to be motivated to do) and now rarely do I have pain or flareups.

Barometric pressure changes still can wreak havoc on the ol' bod though. I just call them my FMS days and get on w/ life.

BTW
FMS is a real syndrome. They just don't know what causes it or how to treat it or cure it.
I have it, my older sister has it, my mother has it and my 21 yo daughter has it (luckily she was able to be diagnosed and treated quickly so she hasn't had to suffer for years like the rest of us)

[Crankin]

I just got back from my appt. at Brigham and Woman's. Of course, I was a wreck and my bp was up to 140/69! The doc and his PA were very nice, but I still have no answer. They reviewed all of my records from my rheumatologist and had me fill out an extensive history. I have been feeling really bad lately, lots of pain in my leg, back, stomach upset, etc. I gave both of them the whole history orally, too. Basically, all he did was feel the pulses in my legs and say that he would not put me through any testing (the pulses were fine), because what i am describing is happening at rest, in addition to the symptoms while riding, and the GI stuff is not indicated with a vascular problem. I think they were happy to see someone who "appears" fit and healthy, but I am still not happy.
I think that I have exhausted my options, unless I actually have a cardiac problem, I have been to every type of specialist I can think of. Perhaps this will go away, like it did before. I am considering giving up the acupuncture, since it doesn't seem to be doing anything and I have to pay for it, unlike other stuff.

[Smilie]

I am so sorry you still have no answers. That is very stressful. Sending you good healing thoughts.

[OakLeaf]

(((((Crankin))))) It's so frustrating to know something is wrong but not be able to identify exactly what. :( Keeping you in my thoughts.

[redrhodie]

Oh, I'm so sorry to hear this. I was hoping you would finally have a diagnosis.

Have you been tested for Lyme Disease?

[Crankin]

I have been tested for everything. Lyme, MS, Lupus, Chron's, Colitis, arthritis, every blood test imaginable. I've had 3 MRIs (head/neck, upper and lower lumbar), 2 abdominal ct scans, trans vag. ultra sound, ultra sound of my left leg, thyroid scan, bone scan, illiac x ray, EMG, cardiac ultra sound, hearing test, colonoscopy.
What I found out? I do have tiny nodules on my thyroid, which I have had checked twice since the original finding. They are not growing and I don't need to have them checked for awhile. A couple of my discs are a bit degenerated, but pretty much this is normal for someone my age , who has been exercising (a lot of impact at first) for almost 30 years. I have some kind of genetic marker for colitis, but I don't have it (my aunt and 1st cousin do). My rheumatologist says I could have some deep root nerve issue, which is slightly indicated on the MRI. Other than that, I am the picture of health!
I've had the weird pain on my left side for years. It usually appears at the end of a regular illness, and then it's gone. However, it's been here for a few weeks. I've also had ulcer like stomach issues since my twenties. It comes in cycles. The pain while cycling started after I started riding more than 2,000 miles a year and my speed got up to just below a 16 av. These weird symptoms always start in the summer and peak in the fall. Funny, since I started with all of this last year, I have had none of the allergies and asthma stuff I've had all of my life.
On top of this, I don't do well with thinking about illness, although I am much more relaxed about it now. So much so, that I pretty much ignored everything in the last few weeks until I couldn't stand it. Everyone tells me to stop being so fanatic about working out; I actually wish I could do more. I see people with horrible health problems doing tris and centuries and I know that at least so far, I don't have anything that should preclude me from doing more. Being active is pretty much my whole social life and I get pretty miffed when I am told to "just ride 5 miles."
I need to start practicing what I preach; more meditation and relaxation. It works for me, but I am not good about practicing. I have to get this under control, or I am not going to be a very good psychotherapist!

[BleeckerSt_Girl]

Here is just one avenue to seek more information on-

Of all those tests you have had done, I would say the the test for lyme disease is the most notoriously inaccurate, resulting in way too many false negative results. I have read that about 1/3 of positive Lyme cases test out as false negative. Also, contrary to what we have been assured over the past years, Lyme disease is perhaps not always 'cured' by the typical 30 days round of antibiotics, but can possibly go dormant in the body only to re-emerge and do more damage later on. New information is being discovered every day about Lyme disease, and it is apparently far more prevalent than previously stated.
It has so many varied symptoms in different people that makes it hard to pinpoint and is sometimes finally dismissed by doctors as a mental/emotional problem, especially when lab tests come back negative for Lyme.

I watched this documentary about chronic undiagnosed Lyme disease- you might want to get a copy and watch it....it has a lot of astounding information and really opened my eyes to some things:
http://www.underourskin.com/index.html
This documentary changed how I see things in a big way.

Lyme disease and fibromyalgia might be connected:
http://www.revolutionhealth.com/stories/view/e1dd7c245b644516abe97b197213e680

Now mind you I am not saying that I think you have Lyme disease, but considering how misdiagnosed Lyme is, and how many wildly varied illness symptoms it produces, it might be something you would like to investigate a bit further. Especially considering that you have seemingly reached a roadblock in locating the cause of your multiple long term symptoms.

good luck with all this. :o

[Crankin]

Lisa,
Thanks for the information. Of course, Lyme was what they thought of at first, in 2005, since they knew I spent time in the woods. But, many of these subtle symptoms, especially the GI stuff started when I lived in AZ and was nowhere near any tics. I guess I could have gotten it as a kid?
The last Lyme test I had was the one sent to the lab in CA, that was discussed in the link. There has been a ton of this around here because of all of the woods, hikers, etc., so even my family doctor, who I don't necessarily like, is very aware. They diagnosed about 15 cases just in July this year. I guess I could have another test, or talk to someone about it.
I am not having any trouble sleeping (although I did last year) or depression, etc. What sort of got me interested was the woman in that link said she had ear ringing (which I do, on and off) and a few other weird things that I have had. However, these are things that you can have with Fibro. I thought about going back on Elavil, but I don't need it for sleep. I think it did help the symptoms, though because I was much better while I took it. I guess I have to decide. Right now, I just want to enjoy my long break from classes. We are going to Jackson, NH for New Years, staying at a very nice inn. I plan to x country ski and snow shoe, no matter what!

[BleeckerSt_Girl]

The last Lyme test I had was the one sent to the lab in CA, that was discussed in the link. There has been a ton of this around here because of all of the woods, hikers, etc., so even my family doctor, who I don't necessarily like, is very aware. They diagnosed about 15 cases just in July this year. I guess I could have another test, or talk to someone about it.

If you watch that documentary "Under Our Skin", you will see how doctors are possibly being given false information about Lyme disease. Thus, they are only 'aware' inasmuch as the info that is getting published and distributed to them. It's scary, and a lot of it has to do with Big Money. I won't go into it further here, but Lyme disease is more prevalent and more complex than originally thought. it's something we should all try to be more informed about. Again, it may not have anything to do with your problems.

[Crankin]

I did watch the trailer. I am healthily skeptical of all of this stuff; I see the rheumatologist again in February, so I'll bring it up then. For now, I have to get myself back on track with the "alternative" stuff that did seem to help a bit.
I read a little bit more about the different diagnostic tests on line and I am positive that I had the the "second level" ones for the IGg and IGm immunological stuff; I remember because one of my kids was born with a low IGg level and he had to have allergy shots for years. I never saw that term again until I had the blood test.
Thankfully, Scott interrupted my reading with a video chat, since he just bought a new I Book. So, I am done, because reading medical stuff on line is kind of deadly for me!

[BleeckerSt_Girl]

I agree, I think it's good to be 'healthily skeptical' about all things medical! :)