Do I have fibromyalgia or something else?

[Hazel Juniper]

On September 24th 2013 I started feeling sick, lower abdominal pain on the right side and feverish, and went to the university health center. The doctor sent me to the hospital because he was afraid I could have appendicitis. It turns out it probably was an ovarian cyst, there was only fluid left and that was all the CAT scan showed because it had probably burst.
The hospital had given me morphine, which I didn't really want but they wouldn't give me anything else, and I stayed in a motel with my parents for the night who had driven up from Connecticut. But the next morning I was puking (probably because of the morphine) and my stomach still hurt so I went home for the rest of the week.
I was ready to go back when I started having really bad diarrhea and such bad stomach pain that I couldn't sit up straight or walk. I fell behind in my classes and obviously it is impossible to go back to college if you can't walk and you have to run to the bathroom all the time.
I ended up withdrawing for medical reasons for the semester. After that I went on the FODMAP diet. Basically I cut out gluten, lactose, and things like onions, mushrooms, sugar, chocolate, etc. It helped and the digestion symptoms went away. But I think the morphine may have been the trigger for this, but I also have IBS (Irritable Bowel Syndrome). But the last flare up I had was when I was 16 and it was a very gradual build up until it was awful.
I am still on the diet, but since September I have been (1) increasing tired and my muscles constantly hurt. Mostly in my lower back, but sometimes all my joints throb. I have a lot of difficulty concentrating. (2) I am constantly tired, fatigued, and feel a lot of malaise, but I can't seem to shake it. I am so tired I have little motivation to do anything. And I feel lazy and that upsets me because that isn't how I normally am. I am in an Honors college with a 3.8 GPA. I want to go back to school, but I can't if I feel like this.
(1) Within the last month I have had a lot of ear ringing and fluttering. (2) I pee frequently, but not that much comes out and sometimes it is funny colors. Either almost neon yellow or darker yellow. I thought I wasn't drinking enough water, but even if I drink a lot of water, it usually doesn't change. It does not hurt to urinate, nothing like that. (3)In the last month I have had a circle on my stomach near my navel that is almost tan/redish. I think I have another one developing on my side. They do not itch, they are not scaly. (4) Sometimes I feel lower abdominal pain, almost like period pains, but I am not having my period. I feel an outline of an organ, I think it might be my bladder, but I am not sure since it doesn't hurt when I urinate. (5) Loss of appetite. Sometimes food tastes odd, other times I just can't stomach the thought of eating even if I feel hungry. Like I just can't I feel so nauseous. (Have you ever felt nauseous and hungry? It's awful. Haha) (6.) I do NOT wake up in the morning with stiffness like some people dol. (7.) It seems like when I exercise my muscles hurt MORE and I get ten time more tired. (8.) I have usually 4 good hours in the day after I wake up in the morning. Past that I am really tired and have issues concentrating and I generally don't feel well. (9.) Occasional dizziness lately and I DID eat and I WAS hydrated. I nearly toppled off a chair a couple of times and the room spins sometimes, but only for a split second.
I have had issues with depression in the past. I am on lymictal (lamotrigine). I am not bi-polar however, I went through all the SSRI's and I am unable to use them. (Sometimes treatment for this is anti-depressants.) I am on Concerta for the fatigue and concentration issues, but I do not have ADHD or anything like that. I am taking Vitamin B-12 & 6 and pro-biotic.
I having been doing really well mental lately. I have been for the last two years. Despite everything I am not feeling really depressed right now and the doctors seem to think I am making myself sick, which is ridiculous. The moment they find out you have issues with depression they write you off either as a hypochondriac or someone who is making themselves sick because they almost WANT to be depressed. Dumb.
I can tell you I DO NOT have any of these. I have been tested.
Mono (Epstein-Barr Virus)
Anemia
Lyme Disease
Thyroid Problem
Vitamin D Deficiency
NO STD's (Celibate) I have never done drugs and I hate alcohol and never drink it if this helps. I am skinny and have always been a good athlete. I have always eaten well. (I know, I sound like a boring geek. Haha)
Not a gluten allergy

BASICALLY, WHAT I WANT TO KNOW. * Does anyone think it could be something other than what the doctors think? Could it be something I am not thinking of or is there something I should be tested for? Are these symptoms indicative of anything else?
PLEASE HELP ME! I AM SO DESPERATE.THANKS!

[JMITW]

you describe a gastro intestinal issue, not FMS.

you need a different doctor....specifically specialists like a gastro enterologist and a urologist or gynecologist.

Did they do the FULL mono panel (which has 4 different results (current, past, recovering, chronic)? The mono spot test is inadequate.

there are different types of anemia

many docs don't know how to properly test for and read lymes tests...look up lyme literate MD....also there was a new virus similar to lymes just identified about a year ago--most docs probably don't know about it and it does not show up in a lymes test.

what about your white blood cell count and inflammation markers?

i wonder if this could be an infection caused by the cyst.

my sister had abdominal pains for years which the doctors dismissed--until she ended up having an emergency appendectomy..

[shauna]

So first, big freaking hug, because anyone who runs into the moronic doctors telling you that you are doing this to yourself needs it. And for reference's sake, last time an auto-immune association did a survey, over 45% of the respondents had doctors say pretty much exactly that to them before they got diagnosed with an auto-immune disorder: they were worrying too much about their health, it was all in their head, and so on.

The symptoms you mention? Screw the doctors, IMO. There are a LOT of conditions that can cause this sort of thing, but the ones i know of are rare, so doctors either don't seem to know about them, or assume because they are rare, YOU couldn't have it.

So, the few things I know of:
Mast cell issues.

Mastocytosis - doesn't seem as likely, but perhaps just starting out?
Mast cell activation disorder or syndrome (MCAD or MCAS)

Information on the latter is nearly impossible to find, as this is a rare disorder. Best information I've found is on facebook, oddly enough, with some support groups there. If you get on facebook and look up mast, mast cell, mastocytosis, or mcad, the groups will come up. They are all pretty active, and they have GREAT files sections with lots of information on not just symptoms, but also how to get tested (because most doctors don't even KNOW how to test for it, even though urine and blood tests encompass most of it).

This is a condition where the mast cells are triggered to have an allergic reaction by things that aren't allergens. HOWEVER, while some people have cells that 'shock,' releasing all their contents at once, some have cells that 'leak,' which release their contents slowly and cause weirder symptoms that can have less of a resemblance to an allergic reaction, or not that the layman would recognize. And often people with this test negative for allergies, because the body's response to an allergen, which triggers mast cells, isn't present.

Some reasons I think this is worth looking at:
- Exercise, while recommended at low levels, just wipes people out with this. Totally exhausted.
- Vertigo/dizziness is common.
- Gastro issues like nausea are common (actually a part of an allergic reaction).
- foods are VERY common triggers for reactions, so many folks with this go on pretty restrictive diets. Gluten, dairy, and sugar are really common ones that are avoided. Chocolate, too. Many eat mostly foods they make themselves, from scratch, to eliminate symptoms.
- Morphine will MESS you up if you have this disorder, usually.
- Infections, injury, or illness can trigger this disorder to start off with, or can trigger it so that it becomes much worse all of a sudden, because mast cells are used by the body in dealing with these conditions.
- general exhaustion is common, as well as joint and muscle aching.
- mental difficulties, like depression, anxiety, or concentration issues are common AS symptoms, not as frustration with dealing with symptoms.

...I do not know about the urine colors, but I do know that there can be digestion problems which could potentially affect that.


Even if you do not have this, seriously, asking on one of the support groups, mentioning symptoms, might be of use, because people with this condition frequently have numerous other oddball or rare conditions, and so may be able to suggest other possibilities based on your symptoms and their experience.



Another possibility you may want to look into is lupus. I do not know much about this, only that it has some overlapping symptoms with mast cell issues - the exhaustion, especially after exercise, is common.

Lyme disease is another one - overlapping symptoms, can be helped by diet, often.

If none of this helps, my advice is this.
1. Make a list of your symptoms. If you can find technical terms for them, that's best. Like tachycardia for a certain type of heart palpitation, as an example. Then google 'symptoms' + your symptoms or 'autoimmune disease' plus the symptoms, and put them in different combinations.

You'd be amazed how often that will actually bring up something that you've never heard of that turns out to be of use. I have a couple rare disorders myself, and I've had doctors - and friends - think I was nuts until I finally got diagnosed. If you feel something is wrong, my advice, as someone who has been there, is to trust yourself. And write down ALL your symptoms in a bullet list, in detail (like, this happens at X intensity, Y times a day/week, correlating with Z things) and hand it to the next doctor you go to see for help, to make sure they get it all. Because so often, they listen to just a couple things and make up their minds what is wrong without really listening to anything else.

Good luck!

[hava]

I have described some breathing techniques(pranayam) to help you. Note down what benefits you notice in the first four weeks and then continue the pranayam. Review the list of symptoms.Over the longer term you can recover fully, with pranayam.
Pranayam
You need to help your body to build up your immune system.The breathing exercises - pranayam is a holistic approach creating extra oxygen supply in the body and will slowly help with the health problem.Do the pranayam to see the benefits.If you feel tired or dizzy stop, and resume after 1 minute.Build up your timing slowly and after two weeks at the suggested duration you will start to notice benefits.

Bhastrika - Take a long deep breath into the lungs(chest not tummy) via the nose and then completely breathe out through the nose.Duration upto 5 minutes.

Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 15 to 30 minutes twice a day. Not for pregnant women. Seriously ill people do it gently.

Anulom Vilom - Close your right nostril with thumb and deep breath-in through left nostril
then – close left nostril with two fingers and breath-out through right nostril
then -keeping the left nostril closed deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.

Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 21 times
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Only by doing you will benefit and will feel good that you can do something to help the body.Copy and print this to master the technique.This is simplified pranayam for everyone and you do not have to go to classes to learn. This is for life unlike short term classes where you do it in the class then stop when classes are over.