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11 Replies
agg2231 - March 31

Hi, I am a 19 year old male.

I have suffered from IBS all my life. In the past few months I have lost energy and focus. I find it very hard to remember things that people tell me that others would find simple. In the past 2-3 weeks my lower back, spine, has started aching terribly. I also have headaches which are not awful but are definitely annoying. I looked online for any reason for my back pain and someone suggested fibromyalgia. I have shoulder pain without any shoulder injury. I have muscle twitches everyday; they are painless but definitely there. I cramp really easily, especially my neck and arms.

This is probably a long shot but I just was curious to know if anyone here thought I might have it. As I looked through the symptoms I had a few of them which I listed above.

I also want to list some things that might help you understand my situation better.

-My aunt has fibromyalgia, I don't know if it's genetic at all.

-I had a concussion from soccer a month and a half ago. (Note: Back pain started way after concussion)

-Thought it was worth mentioning these pains thats I have although they hurt, they are not seemingly debilitating. More of a nuisance.

I understand that ya'll are not MDs, but I was just curious to know what you all thought before I went to the doctor. I know it is very uncommon in men which is why I was consulting here before I made far fetched claims.

Thanks to all :D

 

agg2231 - March 31

I also want to add that it seems to me the symptoms that jump out most to me are my forgetfullness, IBS, fatigue, and these few random pains.

 

Fantod - March 31

ag2331 - Welcome to the board!

You need to see a rheumotologist to determine if you have Fibromyalgia (FMS). Be sure to mention that you have an Aunt who has it. There is a genetic component to this syndrome. It is rare for men to have FMS but not impossible.

Also, mention the concussion which may have some bearing on your back and shoulder pain. There are other things (such as thyroid) that can mimic FMS. The rheumy will run blood panels to rule out other causes of your symptoms.

Good luck and take care.

 

January - March 31

HI. Your symptoms sound like fibro. The tricky thing is there are many strange diseases with these symptoms, and there's a lot of overlap with fibromyalgia and them. There's a recent post on here under the name "porphyria" which you might want to read. Some of these disease are rare, but they DO occur, and if you have one, it's not rare for you. You can ask for a urinalysis to check for porphyria.

The "IBS all my life" is a red flag to me, and makes me think you should definitely ask for a blood test for celiac antibodies. This disease is not well known in the US, and your dr. (even a gastroenterologist) may not be familiar with it, but it is growing rapidly due to our diet. It is dangerous if left untreated. The treatment is simply a gluten free diet. The dr. may think you need to have diarrhea or be really skinny - but that is not true - many people with celiac have constipation - or NO GI symptoms at all - or the alternating symptoms of IBS. Celiac in the auto-immune form causes chronic pain, fatigue and brain fog, as well as later on a tendency towards diabetes, cancers and a host of other diseases. PLEASE read up on this disease and request testing!

You might not have celiac disease - but a gluten intolerance or allergy; it's not yet clear if these are the same thing. Also, the dr. might tell you the "gold standard" is an intestinal biopsy, but if you read up, that isn't true. Celiac kills off patches of cells in your small intestine which is very long. If they biopsy from a healthy site, and miss a diseased patch, you could get the all-clear when you really have the disease. A genetic test is available. And the diet will relieve your symptoms if you have a problem with gluten. While you are probably still eating bread and processed food, now is the time to get checked with the blood test. Google "Dr. Peter Green" and "Dr. Alessio Fasano" and "Dangerous Grains" for more info online. I am on a crusade about gluten, as I was diagnosed with fibro - and suffered for years. But when I learned about celiac and went gluten-free, my overall pain level decreased a lot (it took just over a year) and my gut has never been so normal. In fact, my rheumy now tells his patients to try the diet.

And, on the subject of food allergies - lots of people with fibro have major food allergies to many different foods and chemicals. So you might want to ask about this too.

Another disease that has symptoms overlapping with fibro is Lyme Disease - if you are in a place where this is prevalent you might want to get tested. Or maybe you've had a bulls eye rash? Anyway, the testing often comes back false negative, so you might need 3 or 4 tests during flares. The organism can go dormant. Muscle twitches often occur in Lyme and many people get Lyme without the characteristic rash.

Also, you might want to get tested for Epstein Barr Virus, or EBV - if you've had a very bad flu in the last few years.

It's true, most of us aren't MDs, but there's a wide background on here with a lot of information. (Nevertheless, always check with your doctor, Every Body is different!) Since we have fibromyalgia, some of us are motivated to learn all we can about it, and maybe know more than some doctors who haven't bothered to become familiar with the disease. If you get diagnosed, make sure you research the drugs they hand out before you take them so you can evaluate side effects. Some people do very well on the usual "fibro" drugs, some people do terribly. (For example, Cymbalta helps a lot of people; it made me crazy and put me into diabetes. I've read posts from people who developed severe liver problems from it. So, these are things that you should know - and you should be checked to see if you possibly have undiagnosed liver problems or glucose problems before you start this drug. IMHO.)

There are natural supplements and alternative treatments that can really help too, and this community has a great variety of views and experience.

Good luck to you. Sorry this is so long. I hope you can find out what is wrong and get on a treatment regimen that provides some relief. The sooner the better! Let us know how you are and if you learn anything new, please share it with us!

 

kvc33 - March 31

I know a number of men (including my boyfriend) who have fibromyalgia, it isn't that rare. They tend to under report and suffer in silence. What have you tried for your IBS? Have you tried diet change? Give up gluten and diary and see if that makes a difference. Since you have suffered from it all your life I wouldn't be surprised if you have food allergies. Get tested by a naturopath.

 

agg2231 - April 1

I would like to say I have lurked a bit before I posted and I noticed how nice everyone is here and I must say that I truly appreciate all the responses I have received so far. Very informative.

I want to address my IBS problems first. I have gotten a Upper GI endoscopy and Colonoscopy which did not return anything abnormal other than a small ulcer in my stomach. They took biopsies which also showed nothing abnormal.

I read that FMS can be triggered by a trauma to the head. My concussion was not severe but it was worse than the average concussion. I received it playing soccer for my university. I am very good shape.

Post-Concussion the only thing I have experienced that is abnormal to before was the headaches which are probably attributed to it.

All of these were present before my concussion:

-Fatigue

-Foggy memory - also feeling like it is very hard to pin point that I am living. I guess that is hard to understand or convey, but I feel like I live in a twilight state sometimes. Right now this isn't the case, but around a month or two ago I felt like this. Very strange.

-Shoulder pain

-IBS

I also was wondering....When you, (whoever wants to answer) were starting to feel the symptoms of FMS, did it start out slowly, progress and worsen? Because from what I have read here on these boards it seems like a lot of people are in extreme agony. I want to reiterate that although this pain that I am having hurts, it is not unbearable by any means. It doesn't feel good but it sure isn't killing me.

I hope my lengthy post hasn't deterred anyone from helping me understand exactly what is going on.

-January, don't apologize for your lengthy post because I thoroughly enjoyed all the valuable information you have passed on. I am researching all of it at the moment.

 

OnaJourney - April 1

Regarding your question about how symptoms start - for me, it was exactly as you describe - my fm started slowly, progressed and worsened, and at this point is gradually improving, or at least I am able to do more. I can look back and see many signs and symptoms. In fact about 20 years ago, a chiropractor I was seeing said she thought I had fibro, but it was never investigated at that time. For years, I was having physio, massage, etc. to get rid of aches and pains. It wasn't until the symptoms escalated about five years ago that more aggressive treatment was used.

 

Fantod - April 1

agg2231 - I believe that I have had FMS all of my life. As a child, I never felt rested and had terrible problems with sleep. I also had "growing pains." I was frequently very achey. Since I am tall, my complaint was dismissed because I was still sprouting like a bean stalk. My aches and pains were attributed to growing spurts.

Four years ago, a disc failed in my lower back which was apparently the last straw. I was diagnosed with Fibromyalgia (FMS) a couple of months later. I should add that I also have advanced osteoarthitis and TMJ. I am also mildly sensitive to gluten and have multiple sensitivies to medications, chemicals and green food colouring.

By the way, the most accurate way to test for gluten sensitivity is using a stool sample. A blood test may give you a false negative which is not uncommon. And, January is correct that an intestinal biopsy may not be accurate either.

My father has some of the symptoms associated with FMS such as RLS (restless legs), and Raynauds. I believe that FMS originates on his side of the family although I am not able to document that other than a gut feeling. There is a genetic component as it does run in some families.

You really need to get on with seeing a doctor. The longer a chronic pain cycle continues, that harder it becomes to manage or stop.

To find a fibro-friendly rheumy you can go online or call your local hospital. You should be looking/asking for the physician referral service. Or, you can go online to the National Fibromyalgia Association website and see a listing of healthcare providers in your state. You are going to have to be your own best advocate when it comes to addressing this problem.

Take care and enjoy the weekend.

 

January - April 1

Hi agg2231 - glad you got some ideas here. As "midnighttrain" just posted something about mycoplasma infections, I hope you will search back and read our posts on that - or google for information. The "brain fog" you mention might be related to some kind of infection you have picked up - anything ranging from EBV to Lyme to a mycoplasma (walking pneumonia - and many other illnesses). A very new area of study is the XMRV virus. These infections can sometimes cause pretty severe brain fog - also side effects from many prescription drugs!

As you said the IBS syndrome is most problematic, you might want to try an allergen free diet. One of these consists of brown rice and lamb, but there are several - you can google. Keep a diary of symptoms and after a few weeks of small meals, slowly introduce foods one at a time, and note how you feel. Common allergens are wheat and cereal grains, dairy, soy, tree nuts, shellfish, nightshade veggies (peppers, tomatoes, potatoes and eggplant)…etc. Of course, try to avoid chemicals like artificial sweeteners, food colorings, preservatives, etc.

In the meantime, as you had an ulcer, go easy on your system - there are natural healing things, like aloe vera juice, organic honey, yogurt and probiotics - that you might want to check into. Dr. Oz says Pepto-Bismol kills off the bacteria that cause ulcers. It's important to support your immune health, and your gut is vital in that.

As for symptom progression, I was a sickly child, many allergies and infections, moody and never slept well. The all-over fibro pain started in my late 20s but was episodic and stress-related. At times I literally couldn't get out of bed for a few days - like I'd been hit by a truck. Overwork, stress, poor sleep, infections, and physical and emotional trauma finally did me in, so by my 40's I was no longer functioning well. You just can't burn the candle at both ends! I pushed myself until I dropped.

Start taking REALLY good care of yourself now and get as healthy as you can. Pace yourself, rest, and clean up your diet. Treat your pain. I think the best treatment is medication that targets your PAIN - not your BRAIN. (Yes, I know they are intertwined - but if your neurotransmitters are normal, please don't go knocking them out of whack with antidepressants you don't need. They have nasty side effects (at the least the dry mouth will ruin your teeth), are very addictive and are tough to stop taking. They are also heavily marketed right now.) Usually, fibro patients get good relief from meds formulated with codeine or some kind of narcotic. You have to treat these meds with respect, and you may have to establish a relationship with a doctor who will trust you to use them intelligently. Take the smallest dose you can for relief of pain, even if it means breaking up tablets. If you are in a med. marijuana state, that might be an option to treat pain and sleep. You don't mention insomnia - but most fibro people don't sleep WELL.

Good luck, let us know how you are doing! There's a lot to learn, and as fantod said, the best thing is to be your own advocate. A rheumy will hopefully be knowledgeable - but a lot of doctors don't know much about fibro, so it will help you if you DO.

 

January - April 1

PS. I am pretty sure I got a concussion a couple years ago, and my thinking is still not back to normal. It's better than it was, but I still get days where I feel like I'm in the Twilight Zone! Maybe ask your neurologist about this? If your dr. approved, take some brain healthy supplements?

 

agg2231 - April 2

As I said earlier, I must applaud all who answer my questions. You guys do a phenomenal job providing answers. Regarding if I sleep well..During soccer season I sleep very easy due to my extreme physical exertion, but during the off season I wouldn't call it insomnia but I do have trouble falling asleep. This could be attributed to the fact that my father has similar problems.

There have been times which the back pain I have been facing has stopped me from sleeping for hours, but this is not an everyday kind of thing. I feel it's vital to add that when I get 7-8 hours of sleep a night I do not feel rested when I wake up. It is hard for me to get out of bed for the simple fact that I just feel absolutely exhausted even though I have slept the recommended amount of hours. This has been the situation my entire life so I am not sure if this is normal or not.

I have not consulted my parents about my speculations of having FMS because of fear that they will totally dismiss that I have it. I really don't know where to start. Should I talk to my regular doctor about it first? We have a really good relationship because he my pediatrician (since I am only 19 I don't have to switch until 21 under my parent's insurance). I think my first step is consulting my aunt who has FMS and asking her some questions and if that works out set up an appointment with my doctor and proceed from there. Respond if that sounds like a suitable plan.

I cannot stress how much I appreciate the helpful information I have received here. Weather it turns out I do have FMS or not I truly am grateful for the support/advice you all have offered.

 

Fantod - April 2

agg2231 - The sleep issues that you describe are not normal. I can certainly understand not being able to sleep due to pain (been there, done that). But, if you don't feel rested after 8 hours of sleep than there is a problem.

FMS does interrupt the deep sleep cycle with short bursts of high intensity brain activity, Your muscles require deep sleep in order to heal themselves from the days activities. No deep sleep means higher levels of pain. This rapidly becomes a vicious circle. You may, in fact, have a sleep disorder that is causing your problem and not FMS. If it turns out that you do not meet the FMS criteria, I'd look into getting a sleep study done. You are too young to have these types of issues. Going forward, the impact on your health will only compound.

Talking to your aunt is probably not a bad idea. But, I want to caution you that there are a lot of FMS patients who really do not understand even the basic mechanics of FMS. It is not my intent to be disrespectful, I am stating a fact. FMS is recognised by the World Health Organization (WHO, the National Arthitis Foundation and the Centers for Disease Control. This board routinely encounters FMS patients who have had it for years and don't have even an elementary understanding of this syndrome. And then, there are the doctors who refuse to recognise it, prescribe hot baths and extreme exercise, are not up to date on the current treatment protocols etc. I could go on for days.

I made a couple of suggestions in an earlier post about finding a rheumotologist. That is where you should start. Your current doctor would/should send you to one anyway. This is a situation that requires a specialist.

If it turns out that you do have FMS, go onto Amazon and order "Fibromyalgia for Dummies." Like all of the dummies series, it contains good basic information which is very helpful. Good luck with all of this. Enjoy the rest of the weekend.

 

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