Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hi there everyone! My name is Cassie and I was diagnosed with Fibromyalgia in August. Well, sort of diagnosed. My doctor basically said "We'll just call it this since there is no other explanation." Truthfully, that is better than the rheumatologist who said the pain was being caused by depression and anxiety- "If we treat this, you'll just come up with something else." And better than the neurologist who decided my lifelong dizziness/faintness was caused by my anxiety. I didn't know I was afraid of standing up and sitting down! Am I afraid of showers? Haircuts? Lol, not in the least. I have pain throughout my body, fatigue, difficulty falling and staying asleep, anxiety, depression, OCD, PTSD, gastrointestinal issues, the need to rest after 3 hours of activity or less!, memory issues, concentration difficulty, changes in blood pressure, headaches... I wish I had been diagnosed sooner instead of being tested for a bunch of things and then passed off as a mental case. Perhaps I wouldn't have been so confused about my disabilities! I still feel worthless because I have trouble being active, I am exhausted after a few hours in public and can only be busy a few days in a row before needing time off. How can I have a job? How can I volunteer? The stress of living in the city and having to use a laundromat and go shopping and picking up meds and keeping the house clean and seeing my counselor and visiting my family and having relationships is just too much! I feel lost at how to handle managing my pathetic life. :( I need help and I don't know where to find it.
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Another day, another ouchie?My bruised achilles tendon (don't ask) makes my foot numb. Wonky on meds, whacked it.Now, as to fibro:A lot of reports are going around some parts of social media that fibro (and dang near anything else) are caused by post-Covid, post-flu, post-vaccinations, post-pick-something.1. Your risk of death or serious complications beyond "ow, that shot hurt!" are typically...
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Years ago, I won a mirrored armoire from my job. It's in my bedroom but I rarely stand in front of it. Yesterday, I had to have a dexascan done so I had to change into a gown. There was a full length mirror in the changing room. I'm aware that I gained 5 to 7 pounds over the last year from cheating on Keto but I didn't know what it looked like. It was a reality check.
We recommend the book "Fibromyalgia for Dummies." You can find it on Amazon. It will give you a comprehensive overview of this complex illness and a lot of ways to manage it. It is also a good educational tool for family and friends.
Fibromyalgia is a diagnosis of exclusion. When everything else has been ruled out, the culprit is Fibromyalgia. Hence the need for endless testing. It is recognized by the Centers for Disease Control, the National Arthritis Foundation and the World Health Organization. It also has its own diagnostic code. Fibromyalgia is very real.
Most of us have several underlying health issues in addition to Fibromyalgia. I've been diagnosed for about 8 years. It gets easier to deal with over time. Right this minute, I'll tell you that you are not alone. This is a very active board with a great group of people. I really have to try to sleep now. See you in the morning!
Thank you for the book recommendation. I have bought a number of books on fibromyalgia since being diagnosed and one beforehand because I was curious-which is why I brought it up with my doctor in the first place. I don't have Fibromyalgia for Dummies, I think I have The Idiot's Guide to Fibromyalgia. I am still reading all of these books. I am better at reading than applying what I read, though. Which is problematic, I know! I've discussed this with my counselor and hope eventually to be able to start new habits and form a new lifestyle that will both sustain me and be meaningful to me.
I didn't mind the tests, I actually asked for more, just in case my doctor was trying to diagnose me without excluding other illnesses first. The issue I had was that they decided I didn't have anything at all and was just making up symptoms to get attention. I would not do this as I try to be as invisible and unobtrusive as possible.
I have read that Fibromyalgia has many comorbids, or diseases/syndromes that exist alongside it. Kind of makes it hard to find the right diagnosis in the long run as some comorbids can cause the same symptoms! I'm sorry you have had this for 8 years. But glad it has gotten better for you. I hope it continues to do so. Maybe you can share a little on how you changed/adapted to make room for your fibromyalgia? I think that might be helpful for me. If you've done this in another thread or post- feel free to direct me to it if you wish. Happy sleeping! :)
Well, I know you weren't responding directly to me, but thanks for wanting me to have a good life. I think your first message was a bit critical for what you intended to import to me, but how do we know what'll get through to someone. I'd suggest a gentler note to begin with till you knew me better as critical messages tend to start depressive spirals for me, but not your fault of course! I do have a life, depending on what one calls a life- I have an apartment, I live in a city with my boyfriend, I go shopping, do laundry, take a class, go to counseling... I want a more meaningful life, not this nothingness that drains me for no reason. But, it still is life. My favorite life was when I was going to church on Sundays, visiting a friend on Tuesdays, and volunteering at church or the school library once a week. I lived with my parents, did laundry at home, cooked meals only once a week or so... I got to have my life and feel good about it and still had time to recover from the stress of social life and read and play games and spend time with my family and my cats. I miss that life. This current one is too busy for me, too stressful. So, yes, I am unhappy. I feel out of place, out of sync. I am trying to be strong but I am failing at it.
I have read almost all of those symptoms in the books and websites I have consulted in regards to fibromyalgia. Can you explain which ones you think are not about fibromyalgia?
I look forward to reading what people will share. Yeah, I know. Doctors are not my first choice, anyway. Actually, they were my last. I used my own methods before my boyfriend insisted I see doctors. I don't trust doctors well. I trust people with real experiences and knowledge about the topic they are discussing.
"Cassie, have you researched Chronic Fatigue Syndrome? That was the first thing that I wondered about, whether your docs had looked into that. It can look a lot like fibromyalgia."
No, I haven't researched much about Chronic Fatigue Syndrome. I have read some but what I have read says that Chronic Fatigue Syndrome doesn't include the pain factor as much as Fibromyalgia. Is that true? Have you researched it? I wondered about it myself, especially since I started reading "Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia".
Which leads me to: Trial and error. It's really the only way most of us find effective treatment. We have had people stuck in pain for years, but they kept trying, and found a med or therapy that helped enough that.... well, we don't seem them too often. Maybe it's low-dose naltrexone, or maybe it's weight-loss surgery, or maybe it's finding out the real problem was actually multiple sclerosis or malnutrition, or maybe it's avoiding dairy products that helps someone feel less fibro-whumped. For me, stress management is huge. For others, it's "eh, not so much".
We all more or less advocate gentle exercise and good dietary habits, simply b/c good baseline healthy habits are, well, good. Whether you have fibro or not. Or if you've got, as I do, epilepsy. It helps the body recover more rapidly from flares, keeps us in a healthy routine as our "default" setting, and so forth and so on.
Neurologists and rheumatologists are generally the specialists in the field when it comes to fibro, as it's neuromuscular. They can also help distinguish what meds may help, rule out other ailments, and suggest therapies. I went to stressmanagement seminars originally b/c my rheumy recommended it back about 20 years ago. Couldn't hurt, right?
BTW, if you have anxiety disorder, the anxiety support group is fairly active here. I have PTSD, and it's not why I have fibro, but it's classed as an anxiety disorder. Finding support for it, too, is a huge relief. The stressed-body-stressed-mind connection is obvious, but what's nto is that some anti-anxiety coping mechanisms help with fibro pain. My favorite calming breathing for PTSD? Turns out to be useful for my pain, as well. Pain stresses the body, and that feedback loop is hard to break, so coping I'v elearne dfor PTSD turn out useful for fibro, too. Woot!
Anyway, welcome, Cassie, and feel free to lurk about and join in daily check-in. Been here longer than me, and it's our daily share-care thread:-)
Leo
http://bit.ly/2dDOyGg
You are not alone. There are more of us "spoonies" out there than you know!!
Please find a local support group. That is where I found most of my advice and support from people who understand the feeling of going through a day with sand bags on your arms and legs. They understand how it feels to be called lazy when it's taking everything you've got to just be in the same room and awake. Learn to say no without guilt. Try not to over schedule. Yes, I've had to give up some activities that I really enjoyed and that hurt. I put on my big girl underpants and started searching out activities that interested me and suited the fact that I can't commit to a set schedule. Reaching out and joining groups where I didn't know anyone was way out of my comfort zone but I did it!! I found bible studies that did meet weekly but had a different topic each week so I never felt behind. I found other classes etc. at the library and some online. I have to constantly pray and say " I can do all things through Christ who strengthens me" and my favorite verse is Jeremiah 29:11 " I know the plans I have for you"
HE has a plan for you too. HE has a plan for everyone that has been created.
http://bit.ly/2dDOyGg
You are not alone. There are more of us "spoonies" out there than you know!!
Please find a local support group. That is where I found most of my advice and support from people who understand the feeling of going through a day with sand bags on your arms and legs. They understand how it feels to be called lazy when it's taking everything you've got to just be in the same room and awake. Learn to say no without guilt. Try not to over schedule. Yes, I've had to give up some activities that I really enjoyed and that hurt. I put on my big girl underpants and started searching out activities that interested me and suited the fact that I can't commit to a set schedule. Reaching out and joining groups where I didn't know anyone was way out of my comfort zone but I did it!! I found bible studies that did meet weekly but had a different topic each week so I never felt behind. I found other classes etc. at the library and some online. I have to constantly pray and say " I can do all things through Christ who strengthens me" and my favorite verse is Jeremiah 29:11 " I know the plans I have for you"
HE has a plan for you too. HE has a plan for everyone that has been created.
I do my best everyday , even if my best a particular day is taking a shower, making dinner and doing some dishes. Doing your best doesnt mean pushing yourself beyond your limits and ending up with a pain rate of 10. Pacing of activities is a must. Once I accepted that, I was a lot happier and have some level of peace in my life. That and getting rid of my ex husband - HA HA. My fibro has always been severe and I have learned to appreciate the little things in life and be great full. Just sharing my experience - not intended to be a lecture : )
***Side Note: Ms. Meraz is my mommy***
Okay so at the age of 6 I was already having "strange" pain that no one could really explain. I mean I was 6 so of course me PCP said "Oh it's just "growing pains Ms. Meraz nothing to be worried about she'll grow out of them" ( HA!! SPOILER ALERT -> They never did go away! -_- )
Let's fast forward to 14, still with the mysterious pain, PCP said "Oh the pain is still there because your daughter isn't active enough Ms. Meraz, go ahead and put her in some sports, that should clear it right up." (Nope!)
Let's go to one year later 15; PCP said "Oh well now you're in sports huh? You're in basketball and volleyball, gosh well no wonder your daughter is still having pain Ms. Meraz you're daughter is TOO ACTIVE. (Insert multiple curse words here...)
FINALLY! At the age of 16 PCP said "Oh well I don't know what's wrong with your daughter Ms. Meraz, I think I should send her to a specialist. Welcome in my rheumatologist. After being with him for a year and doing test after test after test... We finally came to the conclusion of Fibro.
The point I'm trying to make here is I understand completely! We all do. For me between college, family, friends and trying to have a relationship and Fibro; I'm one hot mess. Not even hot, just a mess really. Some days I can barley will myself to get out of bed in the morning; and that's on my good days! Lately I have been feeling super exhausted and I have been having flare ups too. I understand the frustration of how to have a job with our situation. As I said in one of my other post I have finally got a job that can meet my Fibro needs, which was tough! What I do to get through the day is, I get up, go look at myself in the mirror and say "All you need to do is get through sun-up to sun-down. That sounds kinda easy right?" It's basically a pep talk. But it helps for me at least. I also have a tattoo of it of my wrist (well not exactly that but pretty darn near close).
I haven't really gotten the whole manage your symptoms part down yet but we'll figure it out together. The important thing (in my opinion) is to know is that you're not alone, being on this website has shown me that. I am the only one in my family that has Fibro, so I felt alone for years but you're not. I know it might be hard to realize that sometimes but it's true. And you're not worthless. I also feel that way too sometimes, especially when my friends want to go out and my body is just like "nah we're just gonna stay home and be in pain today". But just because we can't do what "normal" people do, doesn't mean we are worthless. We're just different, and that's okay. I really hope you feel better soon love bug.
Sending loving huggies... xo Lily (P.S. sorry my post is so long)