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Could long-standing mystery ailment be Fibro??
2 Replies
stromssa - September 17

Greetings to all,
I am new to this forum, and just wondered if anyone can relate to my story.
First of all, I am a 32-year-old woman who has always been "sensitive" and "highly reactive" to stressful situations. I'm one of those types that can pick up an energy in a room and really empathize with people's moods. Sometimes I feel the need to distance myself from things just to form a psychological barrier, if you will.
I am deeply affected by major life changes, as I suppose we all are to varying degrees. The onset of my mystery aliment began in 2000 after my beloved maternal grandmother died of pancreatic cancer (though not unexpected, it was very difficult for me. I was almost 23 at the time). That year, I was also facing a lot of other life changes: Graduating college, my younger sister was getting married, and I was moving to a city a few hours from the only home I had ever known, hoping to find my first job out of college). At any rate, after my grandma's death, I began having more frequent panic attacks (I used to even have them now and then as a child). Convinced I was suffering from cancer like my grandma had, I began having "phantom pains" in my side and even had an upper GI done, and they found nothing. The pains subsided over time. In the meantime, I developed something like an anxiety-related eating disorder, where I was convinced I would choke on my food unless I smashed it up and ate really, really slowly. A few times, I had panic attacks while eating that really freaked me out. Already naturally thin (at the time, I was 5-foot-six and weighed 110 pounds) I really couldn't afford to lose weight. Yet, eating was very difficult because I always felt "threatened" by the experience: What if I choked?
Over time, this issue subsided somewhat, but I still don't take a whole lot of joy in eating --or at least in making food for myself. Stuff just sits and sits in the refrigerator after I eat it...I often have to throw things away. I feel ashamed of this. However, I am now at a healthier weight (120 pounds) and don't look malnourished.
I'm married now to a wonderful guy, but there is some stress in our marriage related to intimacy (I'm often "not in the moood" and tense about things; this frustrates both of us). He wants to have kids right away, but I am rather traumitized about the idea of giving birth (I was a premature baby in the 1970s-only weighed 1 Ib. 15 oz at birth, but survived without longstanding complications). At any rate, medical environments in general freak me out...I think doctors think I'm a hypochondriac.
So, there is stress in that situation. I work part-time in a public library, a job I like, though it is not as mentally-challenging as I would like.
Meanwhile, over the course of the last 10 years, I have had the following chronic symptoms:
1. Muscle aching and pain, particularly in the upper back/shoulder/neck area, worse in the morning, feel like on old person even though I am only 32;
2. Pressure in sinuses; antibiotics don't seem to help; if I lay raised up on lots of pillows the pressure seems to worsen; occasional sneezing, no itching, swollen glands feeling, no temperature;
3. Constant fatigue; non-refreshing sleep; quick to awaken in the middle of the night;
4. IBS symptoms that seem worse in the morning after dealing with congestion at night, alternating diarreah/constipation...may also have lactose intolerance because my mom has a severe case of it starting when she was about my age; my nasal congestion and the spastic colon thing seem linked;
5. I always look tired: Dark circles under my eyes, looked "dragged down"
6. Tight muscle knots in back, mostly, that I can feel when pressed upon; fibromyalgia-like tender points, seems to wax and wane according to the day; I can still function but just don't feel very good most of the time...
7. Am on Atenolol for potential high blood pressure and also related to anxiety attacks...don't have panic attacks as often anymore, but still have anxiety...last blood pressure check at the doctor's was 130/78...
So, that is basically it. The overall feeling I have is that I seem to react to stress more severely than perhaps the average person, and over many years, this has seemed to wear me down. Even just a slightly catrostrophic thought and I can feel my body start to get anxious. It's just like flipping a switch.
Any thoughts/opinions?


Fantod - September 17

stromssa - I hardly know where to start. I've read through your post and there are a lot of things to talk about.

First of all, I sincerely hope that you are seeing a therapist to help you deal with the difficulties you have experienced with food, panic attacks and now the possibility of starting a family. I think that if you are not seeing someone, now would be the time. Certainly you and your hubby need some joint sessions to work through the starting a family. And, as long as we are on the subject, I will tell you that most hospitals have very nice birthing rooms that look like a comfy guest room instead of a hospital room. It is possible to tour a facility ahead of time (maybe with your therapist) to familiarize yourself with things. It is also possible to have a home birth as long as there are no complications. You are not limited to using a hospital. Also, I just saw a newscast about hypnosis helping women who are anxious about giving birth.

Now, let's address the other issues that you raised. I'm going to give you a crash course on Fibromyalga (FMS) and touch on the things that you mentioned.

FMS is a disorder of the central nervous system that causes widespread chronic pain. The mechanism that causes it is not understood. There is no cure but it can be managed. FMS is recognised by the Central for Disease Control and the National Arthitis Foundation. It is diagnosed and treated by a rheumotologist. If you suspect that this may be what you have, than get an appointment to see a rheumy. There are several other possiblities like a thyroid problem that can mimic FMS. If you have had recent bloodwork or other tests take copies of the results with you to the appointment to save time and money. You can call your local hospital physician referral service and ask them for a rheumotologist and/or a pain specialist (I have both) with an interest in FMS. You can also go online to the National Fibromyalgia Association website and register. Then you can see a list of fibro-friendly doctors in your area.

The discomfort that you describe in your back/shoulder, neck area and sinus pressure may be due to myofacial pain. This is associated with FMS but it can also be due to TMJ. You may need to see a dentist that specializes in TMJ and be fitted for a splint to wear at night. The splint will relax your face, not allow you to grind or clench and give all of those muscles a rest.

You may also have tigger points which are muscles that have knotted and will not release on their own. In order to break the pain cycle, it may be necessary to inject them. The longer a chronic pain cycle goes on, the harder it becomes to manage or stop. It is obvious that you perceive stress in places that other people are able to ignore. Unfortunately, it is then reflected in the symptoms that you have described.

FMS disrupts the deep sleep cycle by frequent short bursts of high intensity brain waves. You need deep sleep for your muscles to repair themselves from the days activities. Nonrestorative sleep causes widespread pain and tenderness. Amitiptyline is usually prescribed for sleep issues associated with FMS.

The IBS symptoms may be due to a lactose intolerance as there is a family history. You can buy lactose free milk at the grocery store. You can also buy a box of tablets at the drugstore over the counter to counter act this problem. The tablets are taken with the first bite of food like ice cream that contains lactose. You should also be tested for gluten sensitivity. The most accurate test is done with a stool sample. Many people with FMS are sensitive to gluten and/or lactose. IBS in general is a "perk" associated with FMS and it may be nothing more than that.

There are several medications used to treat the pain associated with FMS. They are: Lyrica, Cynbalata and Savella. Lryica is advertised on TV all of the time. The most common complaint seems to be rapid weight gain. I take Cymabalta and have had good results with it. Savella is new to the US market this year. It has been used for quite a number of years in Europe. OTC medication does not work for FMS. Only certain classes of prescribed medications are effective. It takes time and a lot of tinkering to get the right combination and dose.

If you decide to see a rheumotologist, you need to be very candid about your anxiety issues and what treatment you have sought to deal with it. Also, bring any medication you are currently taking or make a list with the drug name and dose.

Take some time to read all of the information in the blue boxes on the lefthand side of this page. The better educated you are, the more in control you will feel about your health. I hope that my comments are helpful to you in some way. Take care.


mimosette - September 22

I have suffered from very crippling panic attacks my whole life.....EXCEPT when I was pregnant. Never even got remotely close to having one while I was pregnant or nursing my daughter!



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