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 Everbody - I am new to DS and wanted to say hi. I was diagnosed with FMS about 3 months ago, but have been dealing with symptoms for over a year now. I have always thought I was crazy, and it was always in my head that I was feeling these things. I would spend my weekends, or sometimes, weekdays, in bed, in so much pain, which lead to depression and anxiety over what was wrong with me. Nobody understood and nobody could relate. The only person who really listened was my sister, whose partner has diabetes, so she is extremely compassionate and is honestly, one of the best people I know. Anyhow, when I finally went to the doctor when I just couldn't take it anymore, my PCP was amazing. She got right on it, we did a ton of tests, talked about the possibility of it being fibro, but she didn't want to diagnose it right away. Once all the tests came back negative, she referred me to a pain specialist to confirm the diagnosis. I was put on a new medication and so far, it seems to help, well, just a little bit. I still feel awful, but I am having more good days than bad. Within the last month, I quit my super high stressful, fast paced job and have taken some time for me...just to learn to accept my "new normal" life and all that comes with it. Since then, I have been able to focus on my physical and mental health - which has been great.
I still haven't told my mom and dad, or most of my friends. My in-laws know already, which is kind of awkard. My husband, who I asked him not to tell anybody until I was ready, didn't respect my wishes, and told his family. At the time, I was still in the grieving stage, and wasn't, well, I am still not quite ready, to tell people. Does anybody have any advice on how to do this? Or when? I am one of those people who don't like a lot of attention on them, and I don't want my mom fussing over me. Anyhow, posting this online is one of my first steps I have taken in telling people. I have gone to a support group that my pain specialist doctor recommended; however, it just wasn't something I really got into. It was more about coping with your new life and learning about pacing.
Thanks for reading and any advice would be great!
Jessica
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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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Well..my thyroid might be a problem. I have a high TSH but normal T4. TSH increases when your thyroid isn't producing enough thyroid hormones...if only the TSH is high, it could be early or subclinical. Will wait and see if they want to do anything about that or just recheck it at some point. Either it'll even out or my T4 will drop. Meanwhile it's hot and I'm working with Karen, and I have no...
I'm a newbie at it too. I was diagnosed with fibro about a year ago and have steadily fought the symptoms of it. I think I've been fighting the symptoms for going on three years now? Maybe? I don't know for sure. I work from home so I have it a lot easier than a lot of people do. Anyway, welcome! It'll be nice to get to know each other :)
This is a tough diagnosis and it takes time to work your way through how best to deal with all of the aspects of this complex illness.
"Fibromyalgia for Dummies" is our go-to book which is available on Amazon. It will give you a comprehensive overview of this illness and a lot of ways to try and manage it. It is also a great educational tool for friends and family. They can read it and save you a lot of questions.
Pacing is extremely important when managing Fibromyalgia (FMS). You have to respect your limits or the paybacks are h*ll. Learning to say "no" and mean it without feeling guilty is part of the package too. You can still live your life but at a slower pace. What the support group was discussing is a very important part of peacefully co-existing with this disease.
I am sorry that your husband disrespected your request not to say anything about your illness yet. If you are really struggling, I'd like to gently suggest that you consider a form of counseling called "Cognitive Behavioral Therapy" (CBT). It will give you tools to cope with a diagnosis of chronic illness. Many of us see someone for extra support.
If your pain levels are not really improved, you need to go back to the doctor. It takes time and a lot of experimentation to find the right medication/s and dosage for each Fibromyalgia patient. On average, about 6 months. Are you taking a medication to help you sleep? That is a critical part of managing this illness. If you are willing to share your medication regimen, we could probably make some suggestions.
As for telling your Mom, do it when you are ready. She is going to have a lot of questions. This is my basic statement for describing this illness:
Fibromyalgia is a disorder of the central nervous system which causes wide spread chronic pain. In some people, it can be triggered by high levels of stress, childbirth, surgery, an accident or emotional trauma. The mechanism that causes it is not understood. There is also a genetic component as it does run in some families.
Only certain classes of prescribed medications are effective for the type of pain caused by Fibromyalgia. OTC medication such as Tylenol, Alleve etc. generally don't work. Some people require opioids for pain management. This does not make them an addict in the classic sense. They are using the medication to maintain some quality of life. There is a big difference.
Fibromyalgia has its own diagnositic code and is not a "wastebasket" diagnosis. It is recognized by the Centers for Disease Control, the National Arthritis Foundation and the World Health Organization among others.
In the morning, our fabulous spokesmodel, Leo, hosts a daily check in. It is a fact filled and funny story start to the day. And, it will give us the opportunity to get to know you better.
I hope that my comments are helpful to you. You are not alone. Take care.
As far as medications, I sometimes feel like I have a mini-drug store in my bathroom! I also suffer from really bad migraines, so I am currently on Topamax. I also take Gabapentin for pain mgt (for both the migraines and the FMS pain). I find that it does help with some of the pain, but it also makes me extra foggy and out of it.
For the fibro, I am on Cymbalta, 60 MG. I have found that this has helped with my depression and attitude. I'm not 100% sure how much it has helped with the pain, but I do know that I have had more better days, than worse days in the last month or so, so there's that. I also have heavy duty pain medication and muscle relaxers - however, I try not use take them that often, unless I am having a really bad day. I do find that they help, but I feel like pain killers only mask the pain…as everybody knows, it NEVER goes away fully. They also make me nauseas, which in return, I have to take an anti-nausea medication…which just seems silly to have to keep taking medications on top of medications.
As far as sleep, I know how important it is for muscle recovery. I also don't get very good sleep as I wake up several times throughout the night with night sweats, muscle cramping and restless legs. My problem mostly is that I can't stay asleep because of all those things. I take melatonin to help with this. Would anybody consider taking a prescription sleep aid? Okay, lastly, I take vitamins, mainly to help prevent migraines, but I have read that they are beneficial for this as well: magnesium, COQ10, vitamin 10 and a probiotic.
Thank you for the suggestion of CBT - I will look into that. I think we just need to both communicate better about what is going on, how I am feeling and maybe he also needs to learn to accept my new normal too.
Thank you everybody for your support and comments!
Yes, some people take a prescription medication for sleep. Amitriptyline is one of many choices. I started with that. Eventually, I switched to Hylands Calms Forte and another OTC called Mid Nite. That combo seems to work pretty well for me. Sleep and FMS is never a perfect science. You could also try taking a dose of Malic Acid at night or an Epsom Salts bath before bed. Malic Acid is naturally found in the skin of fruit. It comes in capsule form. I order mine from Amazon - Natures Life Malic Acid 800mg. Malic Acid will help relax your muscles.
You could change your bedding and sleepwear to products that are specifically for menopausal women. Night sweats are horrible. There are sheets and pjs that keep you dryer and more comfortable.
It sounds like your doctor and you have a pretty good regimen going. You could try ginger for nausea which could maybe eliminate one med. Ginger ale, ginger in capsules and there are ginger chews too.
Hang in there! Hugs!