Fibromyalgia???
Moms View Message Board: General Discussion: Archive August 2008:
Fibromyalgia???
For atleast the last month I have had pain in my shoulders, neck and middle of upper back. Real bad to where I can't get out of bed in the mornings. I lay in bed for hours at night before I finally fall asleep because I can't get comfortable. I toss and turn all night long and its a huge chore to do that. I literally have to use my hands to lift my head to turn over or sit up. I can barely turn my head to the left so I've been relying on my friend to drive me everywhere I need to go. I have been to the doctors and the anti-inflamatory meds and other meds they gave me don't help at all. I went back today to see if I could maybe get a referral for physical therapy. The doctor sat down and looked at my records and then he came in and did his "poking around". I have 12 of the 18 "sore" spots they check you for for Fibromyalgia. He also ordered labs to rule out Rheumatoid Arthritis and Systemic Lupus Erythematosus. He also said that I have gained over 30lbs this year. He says it could possibly be because of all the med changes I have gone though and the antidepressants I am taking can cause weight gain. And that my weight gain is not heping matters and that I need to loose this weight. But that if it is Fibromyalgia that they will be changing my antidepressant again. Gee thanks doc! I truely have been trying to loose weight. I've been doing WW's forever. I have tried many other diets, had a personal trianer that almost killed me and have gone the GNC diet pill route. I loose 10-15 lbs then I plateau and gain it back. So now he wants me to come back on Monday for a Gastric Bypass referal workup. I really hope my labs are in by then because I'm terrified. My husband is deployed, which brings up a whole other issue. Do I tell him? If so do I wait for the blood work results? I don't want to tell him because there is nothing he can do and I don't want him to worry about me any more than he already does (There has been lots of drama this deployment!) but at the same time I don't want him angry with me for not telling him right away. And part of me wants to tell him because I tell him EVERYTHING! He is my bestfriend and its killing me that he isn't here. Then there is my house. I can't stand that I'm not done unpacking yet and because I've been pretty laid up in bed it looks like a tornado hit. So that adds to the depression which the doctor says causes flareups And then there is the whole issue of being addicted to pain killers. I have never been one to finish my pain meds. I take them only when I absolutely have to. After my C-Sections they gave me some really stong meds to take for the pain and I think I only took 1 or 2 and delt with the rest of the pain. There is a long history of abuse and addictions in my family on both sides and I am so scared if I take them I will go down that same path. If I take the flexeril I'm really loopy and it doesn't really help much as I think it should with the pain, but if I don't I'm such a witch that nobody can stand to be around me. If I cut them in 1/2 they don't work, I've tried that and its not strong enough. I'm not really looking for anyting here, just venting really....I haven't told any of my family and really don't want to because it will either be that I'm faking it or they will start to act like I am crippled and I don't want that either. I just want a "normal" life what ever that is, I don't think I have ever had one of those.
Kristie, you are describing exactly what I went through 7 years ago. I have 16 of the 18 *tender points*, was repeatedly tested for the same things you are being tested for. And as much as I *really* hated it, the diagnosis of fibromyalgia was added to my list of *stuff*. There are also a number of other symptoms or conditions that go along with having fibromyalgia:
Fatigue
Irritable bowel syndrome
Sleep disorders
Chronic headaches
Jaw pain
Cognitive or memory impairment
Muscle pain or morning stiffness
Painful menstruation
Numbness and tingling in the extremities
Dizziness or light headedness
Skin and chemical sensitivities
Also, many factors can make it worse or cause you to have a flare, the weather, your stress, etc.
There is a medication available specifically for fibro/depression. It's called Lyrica. It's supposed to work very well. However, as with any drug, do your own research before taking it.
There are a number of other things you can do to ease the symptoms/pain from fibro. Exercise IS good for you, but you have to choose exercise that will not increase your pain. Gentle, daily stretches can help a lot too. There are even fibro support groups, both IRL and online that you can join, in addition to health messageboards that have forums specifically for fibromyalgia. You can pick up a LOT of tips and information from people, and some of it may help you.
Also, sugar causes inflammation in your body, which will cause more pain.
Heating pads, heat packs or ice packs can help a lot too - I use them every day. LOL
I know what you are feeling. BTDT I couldn't figure out what was wrong with me and went to so many doctors. Up until then, I was a total skeptic when it came to fibromyalgia. Now I know it's *real*.
As for telling your DH, I say DO IT. You are putting added stress on yourself just worrying about not telling him.
Just remember - do your research. What helps someone else may not necessarily help you, and vice versa. It's a chronic condition, but there are a lot of things you can do to minimize symptoms and pain. Right now you are feeling very overwhelmed by everything that is going on in your life AND having to deal with this, so that's probably making you feel worse.
If you want to email me, I can give you a bit more information.
{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}
I don't have time to give you a well thought out response right now, but I wanted to offer hugs, and I'll post later. ((((((HUGS)))))))
Oh, you are really going through a lot! Lots of hugs. For the weight loss, I can tell you that I did a detox diet called "standard process". I do not have all the other medical issues that you do, but had a lot of success with this detox. I had been feeling depressed, had a lot of trouble sleeping and had issues with pain - certainly not to the degree that you are suffering, but it was enough to interfere with my daily activities.
After a six week period on the diet, I lost 15 pounds and most of my other symptoms vanished. Karen mentions sugar making fibro worse and this diet eliminates sugar.
You just might want to try a detox before something as drastic as gastric bypass.
Hugs!
Ame
I am sorry you are dealing with so much! I do not have experience with this, however, just wanted to let you know you will be in my thoughts and prayers! If your dh is your best friend...he will want you to tell him, I am sure.
Thank you for all the info. I looked up the info for Lyrica and I'm not sure I should take it or not. It says it causes weight gain and I've been told that weight has a lot to do with my problems. I will look at the support group page later when I have more time. I am hurting even more since the doctor did his poking around. Spots that were not sore before like my chest and hips are now.
I talked to another military wife that has fibro and had to have the gastric bypass. She said she has only had one bad flare up since her surgery 4 years ago. But she also said that I am going to have to fight with tricare to get it paid for. Even though my (military) doctor said its medically necessary. I hope not because I don't know if I have the energy it takes to fight with them. She said she will help me get though the fight with them if I need her to.
I did tell my dh yesterday and he did just what I expected him to do. He freaked. He wants me to go on EFMP and he wants to go to a non deployable unit so he can be here to take care of everything (bills, kids, house, me) Very sweet yes but, If I could reach through the computer I would have smacked him. That is crazy. There is no reason for him to go to a non deployable unit. I want him to enjoy his last 6 years in and not be limited to what he can do. Nothing has changed since he left. Even if the blood tests do come back with something else I'm not going to be the reason he "can't" do something. I told him to do some research and quit freaking out. He wants to put in his Warrant Officer package and I'm surely not going to be the reason he doesn't do that. He loves his job, he has been doing it longer than we have been married and I will not stand in his way. I love him but this is ridiculous.
I've decided to still go back to school and continue with my cosmetology license. I'm 1/2 way there and we have invested so much money. We agreed that if I am still hurting after his R&R that I will wait until either this flare up is over or until he comes home late Jan/early Feb. The classes start up every 2 weeks. He is worried that it will be too much stress on me to go back and deal with school, the kids bday's and the upcoming holidays. The end of the year is a really busy time for us. I'm worried if I slow down too much I will go crazy.
Kristie, the thing is, while fibro is a very real condition, it is NOT one that should prevent you from living your life pretty much as normal. Now, combined with other illnesses/conditions/diseases, it puts a different spin on things and that's where limitations on what you can do come into play - but even then, there are good times and not-so-good times. And even with fibro alone, you WILL have flares. But, IMO, giving in to something simply allows it to control you.
There are many health boards and support groups. The first few years after my diagnosis, I frequented a few health boards, and gained a LOT of information, and some support at them. There are tons of treatments, both medical and natural, that people are trying every day.
See what your blood tests say. Check into your insurance for GBP, if that is the way you want to go. I'd suggest continuing to see a rheumatologist or other doc at least once a year, just to keep a handle on things. If you have physical therapy or massage therapy benefits, then by all means use them. Again, feel free to email me if you want to.
I totally agree with you, I'm not going to give in. I'm going to stay active and continue to live my life. Now if I could just get the people around me to see it that way!
I talked to dh again and he did some research and talked to the Medical Officer over there. He seems to have calmed down quite a bit. I'm not sure what he thought Fibro was but at least now he knows that I'm going to be ok. I think he reacted like that because he is not here. I told him that by him taking over everything when he comes back would not be good for me and that I need to continue with my day to day things just like I always have. He agreed so at least now we are on the same page.
I hope my results are in tomorrow. I'll let you know.
Update:
I got my test results back. It is Fibro. I (mentally) feel better now that I know. And the referral for the surgery was approved. They called today, My first appointment is on my birthday. Of all days, lol. With any luck dh will be here and can go with me.
kristie,
So glad you found out what was going on with your body. 
After reading this whole post I did some more research and I have lots of the symptoms you and karen have discussed. I didn't realize there was an actually test though. Would I ask my doctor for a blood test? Or just an examination.
TIA
Oh wow!! Keep us posted!!!
There has never (to my knowledge) been a specific blood test to diagnose Fibromyalgia. It's been diagnosed through the process of eliminating other diseases/conditions such as lupus and RA, combined with your personal history and symptoms over a period of at least 6 months.
There is apparently a blood test that is now being used. HOWEVER - you may still have fibro if that particular test is negative.
Also, keep in mind that in many cases, fibro symptoms often mimic (or ARE the symptoms of) other diseases or conditions, and also may disappear when certain diseases/conditions are treated. It is just not a cut-and-dried type of thing.
Symptoms (more than above):
Widespread Pain
Morning Stiffness
Fatigue
Vision Problems
Nausea
Sleep Disorders Urinary and Pelvic Problems Weight Gain
Dizziness
Chronic Headaches
Cold Symptoms
Temperomandibular Joint
Dysfunction Syndrome
Multiple Chemical Sensitivity Syndromes
"Fibrofog": Cognitive or Memory Impairment
Skin Complaints
Chest Symptoms
Anxiety
Depression
Dysmenorrhea
THIS site gives a lot more information on fibro. Also, be aware that many in the medical profession still do not recognize it as being a *real* condition.
I would suggest to anyone who thinks they may have fibro, to start with your primary care physician and have a complete physical exam, including blood workups, and go from there. A rheumatologist is the next most common step. Any doctor who is seriously considering that as a diagnosis will want to know about your life style, stress levels, overall physical & emotional health and exercise habits, in addition to other existing medical problems and symptoms.
Kristie, please keep us posted and let us know if your are going to have your surgery!!!
Bumping for Kristie and Stori..............
Also, wanted to add this (taken from the site I listed this morning), for Stori - I also have this:
Myofascial Pain Syndrome
Myofascial syndrome is a pain disorder that affects the muscles and fascia throughout your body. Fascia is like a web that surrounds the bones, tissues, organs, and blood vessels throughout the body. Myofascial pain syndrome can attack and cause degeneration of certain areas of the fascia, resulting in chronic pain and a variety of other symptoms.
Pain usually originates in specific areas of the body, called myofascial trigger points (TrPs), which feel like tiny nodules under the skin. These trigger points commonly develop throughout the body, typically where the fascia comes into contact with a muscle.
Myofascial pain syndrome is a very common illness, and most people will develop at least one trigger point in their body at some point in their lives. The majority of these people will not develop severe symptoms and will be able to continue on with their normal routines. However, about 14% of the population will develop a chronic form of the syndrome, resulting in persistent pain and discomfort.
Myofascial pain disorder is very common in fibromyalgia sufferers. It was once thought that myofascial pain syndrome was actually a kind of fibromyalgia. However, this is now known not to be the case. It is possible to have both fibromyalgia and chronic myofascial syndrome, and therefore it is important to be diligent when analyzing your symptoms. If you notice myofascial syndrome symptoms, record them and report them to your doctor.
Signs and Symptoms of Myofascial Pain Syndrome:
The most common sign of myofascial pain is the presence of palpable trigger points in your muscles. Trigger points are areas of extreme tenderness and sensitivity, and usually form in bands of muscle underneath your skin. They are similar to the tender points caused by fibromyalgia, only trigger points can be felt beneath the skin. When touched, trigger points will produce pain and twitching in the muscles. Often, pain is felt in an area distinct from the trigger point that is actually affected – this is called referred pain.
The pain of myofascial syndrome is typically a dull ache, but can also produce a throbbing, stabbing, or burning sensation. Pain is often located in the jaw area, though any part of the body can be affected. One-third of myofascial pain sufferers report localized pain, while two-thirds report having pain all over their bodies.
Myofascial pain can also produce a variety of other symptoms, many of which may appear unrelated. These include:
numbness in the extremities
popping or clicking of the joints
limited movement of joints, particularly the jaw
muscle weakness (manifested in dropping things)
migraine or headache
disturbed sleep
balance problems
tinnitus and ear pain
double vision or blurred vision
problems with memory
unexplained nausea, dizziness, and sweating
Aggravating Factors:
Symptoms are often aggravated by specific factors. Stress and anxiety contribute to muscle tension and can irritate trigger points. Changes in the weather, including sudden coldness, high humidity, or extreme dryness can also exacerbate symptoms. Physical activity can also trigger symptoms.
Causes of Myofascial Pain Syndrome:
There are numerous proposed causes of myofascial pain:
Muscle and Skeletal Problems: The causes of myofascial pain dysfunction syndrome can be numerous and depend upon the individual. Generally, myofascial pain is caused by some sort of trauma to the muscles and skeleton in the body. Overworking of the muscles can cause damage to certain areas resulting in the development of a trigger point. Poor posture can also trigger myofascial pain in certain individuals. Skeletal abnormalities, such as having different sized feet, toes, or legs, can also contribute to the development of myofascial pains. Frequent exposure to cold weather may also increase the risk of developing chronic myofascial pain syndrome.
Chronic Fibromyalgia Pain: People with fibromyalgia may get myofascial pain syndrome as a result of their fibromyalgia pain. Compensating for pain can often cause reduced movement or an unhealthy posture, leading to the formation of trigger points. The severe pain caused by fibromyalgia also causes muscle contractions around tender points, referred to as guarding. Eventually these muscle contractions cause trigger points to form in addition to the tender points of fibromyalgia.
Depression Associated with Fibromyalgia: The depression associated with fibromyalgia may also cause myofascial pain to develop. At least 30% of fibromyalgia patients suffer from depression, which causes low levels of serotonin in the brain. Serotonin is a neurotransmitter responsible for regulating mood and pain in the body. Depression may interfere with the process of regulating pain, causing MPS.
Effects of MPS on Fibromyalgia:
Having both myofascial pain syndrome and fibromyalgia can be quite trying at times. Symptoms of MPS and fibromyalgia are very similar, making it difficult for medical professionals to properly diagnose many people. Without proper diagnosis, a patient may not receive appropriate treatment, causing his or her symptoms to become even worse. In addition, myofascial pain can often contribute to the pain caused by fibromyalgia, making life much more difficult to enjoy.
Kristie,
I wanted to offer my hugs, and let you know you'll be in my thoughts. I know how hard it is to have something wrong, and not be able to get answers. The docs suspect fibro for me, and although it's unconfirmed at this point, I'm pretty sure that's what it is. It's so hard for people to understand the symptoms we experience are REAL, and that it affects so many aspects of life. I'm sorry to hear you are not well, but happy that you have a DX, that is the first step in the right direction. You've gotten great advice here, so just know we're all in this together, and you can come to MV for support!!
As for symptoms, mine are unexplained pain, dizziness, ringing or numbness in my ears, numbness in random areas, migraine, trouble sleeping, exhaustion, depression, painful periods, anxiety, and vision problems. I also have CFS, which my doc DXed by chronic Epstein-Barr (mono). This has caused attendance problems at work, because there were days where I would be too exhausted to move, and when I stood up I would get dizzy and nauseated. So, as you well know, there are a slew of symptoms, you are not going crazy (it's not all in your head), and you are not alone!!!
I'm sorry if I wasn't clear. The diagnosis was Fibro from the beginning. The doctor came to this conclusion after reviewing my medical record and then through the exam. We were waiting on the blood tests to rule out others like Lupus, Rheumatoid arthritis, etc. I am very happy to hear that it is not all in my head. The more research I do the more it makes sense. I have had a lot of these symptoms for a long time and have been called a crybaby and a hypocondriac(sp?). Hmmmmm....
I've been sleeping a lot for the last 2 days. My dad came and got the kids yesterday so I could rest. The house is so incredibly quiet. Almost too quiet. I know I should be up and doing things but I'm just so tired. School starts Monday so I will have no choice but to get up and get moving around. Until then I going to take advantage of getting caught up on my sleep.
It really means a lot to me to have a place to go where I can vent, cry and get advice from people who have btdt. So if I haven't said it lately-
THANK YOU!
My apologies, I misunderstood it to be you had taken a long time to get the DX! But regardless, you know we are all here for you!!
Quite often, it DOES take a long time to get a diagnosis.
CFS and MPS go hand in hand with FMS, very often. My EBV was *past positive* too.
At this point, you really DO have to take care of yourself. I can pretty much promise you, you won't always feel this badly. It comes and goes.
So for now, take care of YOU!!!!
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