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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I'm alive, I'm sleeping like a rock, and for some reason I wanted cherry juice so that seems to be helping. (??? Weirdo that I am.)***Infamous therapies over history:1. The Attic. The madwoman in the attic is a motif in literature going waaaaaay back: the nutty female relative is locked in the attic. (See: Jane Eyre by Charlotte Bronte for a grotesquely racist version of it, and Charlotte Perkins...
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Welcome to the Perseid meteor showers, the "biggies" usually every year. (The Leonids beat 'em one year IMHO).AND today much of the northern hemisphere will see 5 to 99% solar eclipse. How cool is that? Your best bet is to be in the UK or norhtern Spain, where totality is excellent before sundown. Me, I'll get a super duper tiny itty bitty slice of it, so little that it won't be noticeable. New...
I like reading Princess in the Tower.org for emotional adjustment to chronic pain. Very helpful to me is Bruce Campbell's self-help (he is a psychologist who had chronic fatigue syndrome (CFS/ME). He stresses the idea of pacing. It's very hard to implement, but it pays off in that you find your limits, stick to them, and have fewer bad days and flares. It's about accepting your illness and saying no.
Some get better, some stay the same, some get worse (about a third in each category) according to Robert Bennett, MD, (myalgia.com) a fibro clinician/researcher.
One thing that doesn't go away is the inability of most people to understand how you feel and how it affects your life. Ongoing challenge.
Best of everything to you.
Thanks for the welcome! It's ok, I've encountered that sort of negativity before, usually for an entirely different reason, though. I hear you there. I really didn't want to take any drugs either but my boyfriend insisted they could help me feel better, so I tried to comply. I still dislike the whole thing. Yeek! That's a serious reason to be stuck taking meds!
I'm going to keep trialing and researching for options in the meantime. I have been on diclofenac for some inflammatory pain, but I know that fibromyalgia does not cause inflammation- so I now understand why it only helps with certain pain and not all of it. I just started gabapentin but on a low dose so no improvement yet. That med has a wide range of dosage, giving it a chance to work at any point during my trial of it. Wow, that is a lot of different things to play around with, how does one even realize that avoiding dairy products could help with fibro symptoms? Stress management would be huge for me too if I ever actually learned how to manage it! I have skills the therapist has given me, but I have anxiety about the skill working and my stress may actually worsen when trying to help reduce it! Plus, I get stressed about nearly anything. Bit of an issue that. I got a headache yesterday trying a desensitization exercise with my counselor.
I have noticed that, well, everyone advocates for those things. Especially doctors! :) I have a number of excuses why I haven't been able to stay on a healthy diet (one being food addiction, I eat when I'm stressed), and why I haven't kept an exercise routine (no energy, no motivation...). I thought so, I noticed that when I do manage to complete my exercises, I don't have as much pain. Wait, how do you get a healthy routine to stick as a default setting? Mine always returns to default as unhealthy...
That makes sense, but that also means I'd have to ask for a different set of doctors, since the first ones weren't listening to me. Yes, it could hurt, if they respond the same as the ones I saw. That was extremely painful for me emotionally.
I have multiple anxiety disorders. :) I am trying this forum first and would find it hard to maintain activity on more than one, but thanks for the suggestion. :) Yeah-because that stressed body- stressed mind thing works the other way, too. Back when I was practicing mindfulness meditation, I was able to handle more activities than I am able to now. I also had a lot less stress back then, too. That's great! I'm glad that your coping skills are multidisorderal (that's not a word, is it?).
Thank you again! I'll lurk mostly right now! But eventually I might feel like jumping into some other conversations. :)
"My boyfriend had to convince me to ask my doctor about my pain issues again after I had been dismissed by three other professionals. I finally suggested Fibromyalgia and she proceeded to check for tender points. Then she discussed my issues with both my counselor and my psychiatrist. After the consultation she gave me the diagnosis. I wasn't happy though because I felt I had been shoved away from further testing before finding, or not finding, the real cause of my pain. I asked for an MRI, my doctor explained that they had tested for many things without ever telling me what they had tested for or not found. I have difficulty asking for what I need and being proactive with my healthcare because of mental health issues."
"I am currently working through severe self-hate and condemnation, and therefore have not actually cared about my health and well-being. My boyfriend has had to be my advocate because I refused to be a burden to anyone and tried to hide the fact that I was ill for most of my adult life. I have not stopped living my life (I may have sounded like it in my introductory post). I am just very frustrated, overwhelmed and exhausted. I would like to have a life worth living, instead of being so tired by everyday activities that I never find meaning or pleasure."
"Getting people to understand, including counselors, doctors and psychiatrists has been difficult. They all seem to like to suggest another activity (exercise, socializing, classes, volunteering)- and someone adding more to my life when I already feel overwhelmed by the mere fact of existing in my condition can cause unbearable stress to the point of paralysis.
"I don't take good care of myself. I take supplements and medicines because my boyfriend wants me to. It took me years to begin to take one of my meds every day like I was supposed to because I couldn't remember to take it at a certain time and it kept getting in the way of my sleeping and eating habits. I'm a slow adapter I guess. Exercise takes energy, difficult to do when you can't get out of bed somedays! Does anyone know if it is it easy to reset a body clock? I've been trying off and on for years."
"I am looking for advice on how others have managed their lives with Fibromyalgia and all the symptoms that come with it. I am reading books and making lists of things to try in my life. I am trying different meds to see what will work. I am moving my life around to see what works and what doesn't."
"It took three years for me to get used to riding a public bus- a few times a week! My confidence never grows, no matter how many things I accomplish. My counselor says this is because of "state dependent memories" of being not good enough."
Would that be a few days a week or a few days a month? I'm at a few days a week. Wow, both? I don't seem to have the energy left to do the things that I love- unless I put off the things that need to get done... and then I feel guilty and more fatigued, and the spiral begins! No? Oh, did your symptoms get worse when you kept pushing yourself like that?
I'm glad you are able to recognise when you are on the edge of a spiral. I'm still learning that, but I had gotten better for a while. Right now I fall so fast into anxiety or depression that I don't catch myself in time.
:O That sucks! I loathe family drama, so try to stay away from it if I can, but um, it is family so I get dragged in anyway most of the time. I currently have drama between my mom and dad, they fight constantly- I have drama with my younger brother, he is messing up his life, and my older sister likes to bring some drama every couple of weeks when she needs to borrow money again! One of my aunts has decided that I need to know when she is upset about something someone has done... Phew, family is exhausting! Constant anxiety is the worst! It's really good that you have been able to get the anxiety under control. Mine has a way of turning my life into one shaking overwhelmed pile. Sleeping is one of the easiest and softest and safest ways of escaping the turmoil. I am trying not to sleep as much but I feel so tired!
Ugh. Not being able to wake up sounds horrendous. I guess I've made the most of having to rest so much, I have these really interesting dreams most times I am asleep. Remembering them gives my life a strange sense of adventure and mystery. What oddness will happen this time I sleep?
Wow, I can get why you understand what I am going through- your not being able to function leading to a feeling of depression- that is what I am experiencing right now! I know I have different triggers and traumas and all, but it all does come down to not measuring up to our expectations of ourselves. I feel worthless for not doing many, many things. I'm having trouble feeling like myself without being able to do the things I used to love. I'm glad you have a supportive husband and understanding family. Lol, you sound like a lovely and fun person. :) Thanks, I hope so. I was just doing a joy list and wondering why I choose to spend what little energy I have on worrying about tomorrow or some chore I should be doing instead of caring for my needs/wants. Positivity is not one of my skills. ;)
I had not read that blog post about spoons before, but now I have. Thank you for telling me about it. :) I told my mom about spoons and she wonders how one is supposed to know how many spoons they have to begin a day with. I did not have an answer for her. But I do think about spoons during conversations about energy preservation now.
Support groups are difficult for me, I have social anxiety. Even this forum takes a spoon per post from me because it is a form of social communication. Seeing my counselor is difficult enough somedays. I’m still learning how to say no. :) Thank you for sharing with me. I am glad you found activities, support, and a Bible study group that works for you. Your favorite verse is also one of my favorites! I use it as a promise from God to have faith and hope in when I am able to. I hope that is true!
Thanks for the welcome. :) That is what I have read in the books about fibro, too. Trial and error sucks, though, especially when it seems to be more error than not. I’ve never had a real job before, and I’m not sure I will ever be able to.
It is good to know that best might be doing only a few things in one day, things that other people take for granted to have the energy to do. It doesn’t? That seems to be where some people want me to be at. Perhaps I am also reading some misinformation when looking for motivation to change some bad habits or stop procrastinating as much. As you said before, what works for some, doesn’t necessarily work for others. Learning how to pace should be on my to-do-list. Lol! Hopefully you can get rid of him from your life at least! Do you have any depression with your fibro? I ask because depression is hindering my ability to appreciate the little things and I’m getting angry and irritated at having more and more to do pile up. That’s fine. :) I didn’t read it as a lecture.
Also. You need a different rheumatologist.
Fibromyalgia goes together with a lot of things. And some of the tests are not accurate a good rheumatologist would tell you that. Tests may come back neg. and be positive in years to come. Sometimes they treat and if the person is clinically better then that helps them diagnos you? Anyways welcome!( I haven't posted all week) take care.