Posted 11/20/2014 9:46 PM (GMT -7)
I agree, it's easy to say it's not real if there is no solid blood test, it's very annoying.
I even had MRIs
Any of this sound familiar?
Symptoms; more diverse but I can stand it so far. I constantly feel tired no matter how much sleep I get, but 12 hours feels a lot better. Most of the time my bones and joints won't let me do it. The minute I do anything like make a meal, clean, go shopping, or walking, I feel exhausted and have to rest. I have a 20 minute window.
We bought a wheel chair for theme parks, parades, or any long pavement outing. It's mostly because I can't keep up with my weak right side, but also because we can hang a cooler and back packs on the handles. I walk at half speed, so they can wheel me faster too.
I get what my doctor says is migraine tension headaches. I feel as though I am allergic to everything! My nose, ears and throat constantly itch (sometimes I want to scratch my eyes and nose off) and I sneeze a lot. I feel as though I am about to get a sore throat or fever and then it goes away in the same day (not always).
I have chest pains that feel like a skipped beat, I get a stabbing pain that feels as though its underneath my ribs (maybe lung). Apparently this is common, it's called costochondritis, or other names, including chest wall pain, costosternal syndrome, and costosternal chondrodynia. When the pain of costochondritis is accompanied by swelling, it's referred to as Tietze syndrome. Most cases of costochondritis have no apparent cause. In these cases, treatment focuses on easing your pain while you wait for costochondritis to improve on its own.
My back and neck constantly aches, and when I try to sit or lay comfortably, I get aching pains in my shins and legs. I am happy if I sleep through the early hours past 4 am. Doctors say it's restless leg syndrome. My knees and wrists feel as though they are sprained even though I haven't done anything to them. I bruise very easily. Taking a step wrong can be painful, my hips hurt a lot, and sometimes I lose my balance. One hour my knee is half numb, the next hour it's half in pain, or visa versa. Even holding a hand on my skin sometimes feels as though I have sunburn or fever. Sometimes I itch everywhere. My forearm, hands, knee, and feet feel aches, prickles, or numbness daily. Sometimes I'm freezing cold or I'm having hot flashes, or night sweats. Recently my big toes want to go numb, and my soles itch, lol.
Cold weather is bad, hot weather is bad, big changes in air pressure make my joints hurt worse. And my right eye feels like it has some novicane in the middle of it, which is weird.
Since I have neuropathy, thyroid issues, and fibromyalgia, all those symptoms have been affirmed by my doctors and patients on support groups online. Except for the neurologist, he just doesn't say much because he can't find anything on the MRI. Unfortunately a lot of the symptoms overlap so I might be getting a double dose of symptoms. I tend to try and hide most of the symptoms, but I can't hide a right side that won't work.
Fibromyalgia is sort of a disease that doctors attach to people they don't know what to with. Studies have suggested that increased pain sensitivity in fibromyalgia is due to problems in the pain signalling pathways in the brain and the spinal cord (over active nerves). Doctors have a set of rules to check for, but for those of us that actually do have it, it seems hard for us to get taken seriously. This may be a reaction to people trying to use the system for disability payments. Every state is different, Virginia doesn't allow fibromyalgia for disability apparently. There is no blood test, no MRI, no X-ray, and no DNA test so far. Friends and family treat you with concern and apologies for a set amount of time. There is no time set standard. The closer they are, it seems, the quicker it goes into a sort of suspicion that the symptoms aren't there. The same thing for the doctors in many cases. It's like a "hold your breath and see who wins" contest. If only we had a transfer body machine to show people how we feel. Every day is a contest to see who will win, are the dishes and laundry going to win? Or can I get that done and vacuum, cook etc.?
I once completed a 22 mile walk-a-thon in 8th grade. When I was done I slept for 13 hours and could hardly move the next day because everything was so stiff and sore. This is about half that bad, but it's every day, I get tired of it really fast. Like I'm tired of it 2 years ago. I hate stairs and hills. This is unfortunate because I walk up and down my stairs about 50 times a day. Maybe this is why my shins hurt? No, just another weird nerve thing. They would have stopped hurting at least a year ago, ha-ha. The brain-nerve-center is not a very funny comedian.
Last summer, I had 6 tick bites on my legs. On a normal person, it would just be an itchy inconvenience, but for me, it woke me up at 3am and 4:30 am. I am itching and it won't stop. I can't take antihistamines because I will start to speak gibberish. So every 2 hours, I put cream on, and I hope for the best.
If you are trying to understand fibromyalgia, you should know that on some days, it is very hard to simply get out of bed. If it wasn't for my kids and my husband, I would have a terrible time, thanks guys! I really need you! Other days, it takes almost all that we have to simply clean a room in the house -yesterday it was scrubbing bathrooms. Even if the mess is small, sweeping floors and today it's cleaning cabinets (not small today). I only got through 8 cabinets, I'll have more tomorrow. Dishes in the sink magically turn into a mountain, it's embarrassing.
Today, I have itching, sometimes I itch everywhere. I also have a low grade fever. Low grade fevers seem to be a common theme. This is apparently caused by joint inflammation, but I think it's mostly nerves out of control.
There is another important aspect that you should be aware of. Fibromyalgia sufferers often lack the characteristics of a good memory. This is often referred to as "Fibro Fog". It is sometimes difficult to remember small details, or big details. I forget words, appointments, and names. I misplace items frequently, or have to be reminded of things often. I have three boxes of tinfoil because I ran out of it one time, three weeks ago. It is not that we purposely forget important details, we actually try very hard to remember them, and it is just a part of our illness. I just remembered I ran out of tinfoil 3 times, so now I have 3 boxes of it. Unfortunately, I can't remember buying the other boxes.
If you are a friend or family member of a Fibromyalgia sufferer, it is important to understand fibro fog exists and accept it. By the way, if you are wondering how can I write this, it's because I read it 50 times and I add stuff over and over, ha-ha (but not really funny). That way I can think of the right word if I forget it. When I read a book or a newspaper now, I often have to read the same paragraph twice, or three times, before I can understand it. That is, I'm reading the words but they aren't connecting together as sentences until I read them again. It doesn't make any sense to me either.
I have found that my colds last longer and they start a fibromyalgia flare up. The flare up can last a few days, a week, or a month and consists of a worsening of pain and other symptoms, which is just what I need with a fever. A flare up also usually comes after traveling. One day of traveling usually equals three days of recuperation for me. I will try to hide this anyway. As soon as I feel better, we have to go home, then it's 3 more days to recover, it's bad. Fibromyalgia sufferers tend to hide or cover up their symptoms because they would rather not explain it anymore ( to doctors or family; just a broad explanation). I also notice that major weather changes in air pressure make me sleep more.
Brain scans show increased blood flow to areas that are normally associated with a pain response during flare ups. These blood flow changes are common in both normal people and fibromyalgia patients, but Fibromyalgia brains respond with an alteration of blood flow at much lower levels of pain than normal people. Doctors tell us to avoid stress because we have fibromyalgia. This is an oxymoron because it's stressful just to have it in the first place, and we can't live in a fluffy bubble. It might be nice if it came with pizza, cable, and internet. :)
Do not be offended if you live outside of the home of the Fibromyalgia sufferer and do not see them very often. Just try to understand it. Keep in touch as often as you are able by email, instant messaging, snail mail, and/or telephone. Sometimes we want to chat, sometimes we want to sleep (mostly we want to sleep), sometimes we need convincing to go do something (emphasis on the convincing, it's hard to get us out most of the time). Please do not sigh in resignation, or frustration, nor irritation. Keep an upbeat tone and we will definitely say yes!
Hashimoto's thyroiditis is an autoimmune disease (your body attacks itself), a disorder in which the immune system turns against the body's own tissues. In people with Hashimoto's, the immune system attacks the thyroid. This can lead to hypothyroidism, a condition in which the thyroid does not make enough hormones for the body's needs. Some women have thyroid problems during the first year after having a baby.
I have tried telling the doctors that something is wrong with my thyroid since I was fifteen, but I had normal levels on every test. I finally went to an endocrinologist 3 years ago that tested me for levels and antibodies (stuff in my blood that said I was attacking my thyroid), so now I have an answer. I still have normal levels but they put me on a replacement hormone pill, so it's going to be a struggle, symptoms:
paleness or puffiness of the face
Muscle aches, tenderness and stiffness, especially in your shoulders and hips
inability to get warm
hair loss or thinning, brittle hair
Sensitive to cold
Sensitive to heat
Swelling of joints
My hair used to be to my waist, now I can just maintain it at the bottom of my shoulder blade length. So I lost 12 inches, and it really bugs me. I curl it if I want it to look like I have normal hair. Dry skin, goes with the itchiness, I'm pale, hair loss, cold, hot, pain, swelling, bla, bla... Bumps on your thyroid called goiters also come with this apparently. I have at least two because on the last scan they said, "They look very tiny." The year before they said, "It looks very tiny." At least they are tiny, ha-ha.
When the cause of the neuropathy cannot be determined, it is called idiopathic neuropathy. about 30 to 40 percent of neuropathy cases are idiopathic. This is doctor language for "I don't know." I think it just makes them feel better. It makes me feel worse. I had to change neurologists because the first one started looking at me like I was very old meat loaf. The first one decided I had vascular spasms in my brain, basically, quivering arteries. This vasospasm leads to loss of the ability of the artery to carry out its normal function. As a result, the part of the brain formerly supplied by that artery effectively starves and may die ("infarction" or "stroke"). That would explain why I feel like I have stroke symptoms but have no stroke. I take topamax for the numbness and needle prickles sensation in my hands and feet, but it mostly just takes away the needle prickles. Topamax widens the blood vessels in the brain and increases serotonin levels, so they say. It has been found to be increasingly effective for migraine sufferers. Among other fun side affects like memory loss, aphasia (weird words coming out in place of what you meant to say or write), word find problems (not being able to recall the names of people, things or concepts), and a general cognitive impairment that has earned this drug the nicknames “Stupamax” and “Dopamax," I can no longer take any cold or allergy medicine because then I make no sense at all, I speak gibberish. I may as well speak Vulcan and go to sleep. We no longer find it amusing when I stop mid sentence because I'm stuck on a word that is gone. I really want that word, but to save time I will try to find an approximation. In the case of actors' or actresses' names, I just give up and start listing movie names that they were in, if I can think of them. I'm a mess.
The new neurologist is interested and did the fancy MRIs, he makes me do balance tests, walking, touch my nose, push arms down, etc., but he can't find anything. He's happy I have 1 migraine every 2 months instead of once a month. Oh, the tree pollen made me do 2 migraines in a week. I didn't have any migraines before this. He tries to wiggle the diagnosis into the allergy shots (no they have not had those results, and I haven't had shots for 5 months), or maybe the endocrinologist (no again), which would be a valid point if I could find anyone with partial right side paralysis over there. At least he's trying. He says, "just walk more." I really want to bonk him on the head. This is why I wish we had the body transfer thing. He just saw how I walked, which is the main problem, and he's supposed to fix the half dead right side. Oh, well. I'm starting to think going to medical school for that long turns you into more of a book than a person.
I go to yearly visits, they take blood samples, ask if I'm better and if I need refills. I'm hoping for medical advancements. I also found that my family doctor was more helpful on many of the specialist questions than the specialists. Kinda makes me wonder what I'm paying them for.