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CatchMyPain Community and Pain Diary App to manage chronic illness

Hello all

May 30, 2015 1:59 AM

I'm 25 years old and just starting my journey of getting a diagnosis of fibromyalgia. I've been diagnosed with arthritis for years now, but it just isn't making sense anymore. It's been brought to my attention that that could explain my pain better than just "arthritis", so I've started tracking my pain and symptoms to bring to appointments.

Anyone who has been diagnosed have any tips about all of this? I'm not sure where to start.

May 30, 2015 3:22 AM

Iammertle welcome to our family. This is a wonderful group of people who have a verity of health issues. I am 59 and I also have Fibromyagia, Syringomyelia, Syrinx, Osteoarthritis among more heath problems. No two of us react the same to these. We can tell you what helps us in a Fibro flare, make suggestions. You will never meet any more compassionate and caring people than on this site. You can rant and vent as much as you need to no one will judge you, because we've all been there. Someone will always answer you with suggestions, we sometimes come back with a humorous answer, because someone may need to laugh and we can be very serious when needed the majority of us are Christian 's. It doesn't matter if you are having any kind of problem you can talk about it here on this site no one will jd dayudge you. Have a blessed day and I hope as pain free as possible. Will keep you in my prayers.

May 30, 2015 5:10 AM

Hello iammyrtle. Welcome to our community or as some of us say our family. I have fibro too as many here do. Go to the post about summer weather & pain, by Blessed. I put a link for fibro info there. Weezie is right about the support & non judgment, everything. Everyone here is awesome in their own way, and we all share whatever we need to say. Yesterday I vented and shared humor in my post about my tremors & my dog. It wasn't funny at the time because I was hurting, but my little dog gets this big dog attitude, only I wasn't prepared for the battle to restrain him. Lol I hope you come to love this community of new friends and confidantes. Don't ever think a question is stupid or silly. I've learned a lot here from everyone. My fibro started in apps '08-'09, likely due to an abdominal mass that caused high inflammation in '10. And since then I've developed hypothyroidism &, sjogrens, on top of the chronic back & neck issues, pelvic floor issues & other stuff. It sometimes overwhelm me, but I do my best to stay positive. And when I'm down someone here always manages to lift me back up (usually many)! I'm 53 and no matter our ages were all supportive. I'll be praying for you and hope you have a good weekend! 🙏🌼

May 30, 2015 1:38 PM

Hio,
I have something that originally seemed similar to arthritis, then Fibro, then CRPS/RSD. I'm 14, and most docs agree with me and my dad it's CRPS. I'm waiting to see a musculoskeletal specialist, and hopefully get an "official" diagnosis.
It's really confusing when there isn't a clear diagnosis, and you have to explain to the doctor why it's not Carpal Tunnel in the wrists.
Best of luck getting answers!
T

May 31, 2015 10:25 AM

Iammertle, welcome to our community family. I am sorry that you are in pain.. There are many of us here who have several diagnosis in common but one thing I CAN tell you is that most people have different thresholds for pain and scale it differently. If I have a pain level of 8, someone else may feel they are at a 6 or 7 if they have a higher pain tolerance. Always be honest with your doctor about what is happening. Try your very best to describe what activities make it worse, what helps it feel better, etc... If your pain is wide spread and changes alot, you may very well be dealing with fibromyalgia. I have to say, that is the way they finally discovered that I had it and sent me to a neurologist and rheumatologist. Understand, you will need to have a team of doctors. Your PCP will not be the one who will able to help you alone. You will need to see these other doctors and have work ups to see what they find. I hope and pray that you get the answers that you need. Be well and I pray that you have less pain soon.

May 31, 2015 2:34 PM

Thank you so much for the warm welcomes everyone! And I appreciate the prayers.

Weezie12, right now I understand fibro as much as anyone who can do research on Google. What I’m looking for the most is how to deal with the bad days, and what I need to be tracking to show the rheumatologist from people who have “been there done that”. I’ve already seen the compassion and caring in the forums. It seems like a wonderful place.

FlappysLady81, I stalked the forum a little before I even decided to post, hah. I’ve already bookmarked the link you shared. Thank you for that! Support is what I need right now, as very few people around me actually understand what chronic pain is.

ferretbandit, it is very confusing and irritating when they don’t understand! You know your body better than anyone else. Best of luck to you too, hopefully you get an answer soon!

Alwayzinpain, thank you! The difference in pain thresholds is so true. I’ve recently had to start being honest with myself as I’m keeping track for future appointments. I’ve learned to deal with my pain and just “suck it up and get over it”, but that won’t help me figure what’s actually going on. I do have a very high pain threshold, so it’s hard sometimes to figure out how bad it really is. My pain is generally over at least 75% of my body. I do have arthritis in my right knee from previous injury, but nowhere else. So the amount of pain I’m in doesn’t make sense since there are no injuries to be the cause. Fibro makes so much more sense, and includes symptoms of other diagnoses I have received. My maternal aunt was diagnosed with fibro last year, and my maternal grandmother has a rheumatoid condition. It runs in the family. I will be starting the conversation with my PCP, and calling the rheumatologist to schedule an appointment tomorrow.

May 31, 2015 3:42 PM

Iammyrtle, if you have genetic predisposition it may be more than fibro. I was recently diagnosed of hypothyroid and started on meds, after a year of my pcp not listening to me. Shortly after that I got the sjogrens diagnosis (dx). I've learned that app these share some common symptoms so it's much harder to determine what flare up is going on. I've been thinking just fibro for 2 weeks, completely forgetting my asthma, but it's now along for the ride.

It seems I'm having more bad or semi bad days of late, some due to sleep issues. I took an Ambien last night for the first time since October but I've had three nights of sleep issues and was wide awake after midnight. Ways to handle vary several methods, from voltaren gel to rub on aching muscles or trigger points & my neck, heat more than ice (a rice filled sock freezes & microwave well and fits the neck or knee nicely), Rx meds (Gabapentin-neuropathy, Chlorzoxazone-muscle relaxer, Midrin-migraines, Tranxene-anxiety, Tizanidine-neuropathy, Tramadol-severepain, Tylenol Arthritis-mild/modpain, asthma, allergies,heart, thyroid etc), warm showers, rest.. I try to stay alert to when I'm hurting or tired so I can rest more. Trying to be active in either seems to aggravate. I have three pillows; back sleep, side sleep & knee pillows to keep hips aligned when on my side. I'm now using not just my came (imbalance & right body weakness), but bought a rollator walker for heard days, and I use a motorized cart in stores if it's real bad.

If I think of anything else I'll post again. Oh, on days I do feel good I try not to overdo it. Hope you have a good day and a good doc visit! 🙏🌼

May 31, 2015 10:16 PM

I have had to use a 4 prong cane for support, a w/c manual as well as a motorized one. I don't need them any more Praise God. Since I lost a lot of weight.

Jun 01, 2015 3:15 PM

That's great weezie! Mine due to my lungs, asthma and allergies. 🙏🌼

Jun 02, 2015 8:24 PM

Flappsy I understand , my Husband has COPD and a bad knee he has gotten to where he has to use a motorized scooter.

Jun 03, 2015 12:05 PM

Hello, I am glad to have found this community!

Jun 03, 2015 1:04 PM

Hi, welcome to the community. I think you will find wonderful support here. It is a wonderful place when you want to let out about the pain that is getting to you that day when you know that others around you don't and you don't want them to understand. You wish they can emotionally understand but you are thankful that they do not have the pain that you are going through. I praise you for keeping a record. For being so young, I would caution you. I would keep a very detailed record. Fibromyalgia is usually a diagnosis by exclusion and no offense to anyone in our group, if you don't have a good doctor, he will just slap that diagnosis on you because he doesn't want to look for a further. cause. I am not suggesting in any way that it is not a disease or that a lot of these folks don't have it. But I have seen people who have been diagnosed with it who don't have any idea why they know they got. One of them is me. When I looked into it. I knew I didn't have it. The folds who hace fibromyalgia have some specific trigger points, at least I know they have trigger points. My doctor said I had it because I ached all over like I had the influenza every few days. it was nothing like I heard about a person who truly had fibromyalgia. So detailed records are really good. You may have had it diagnosed well but if not that will help you get the diagnosis you need. My best wishes to you and I hope you feel the best that you can today. I hope I didn't offend anyone.

Jun 05, 2015 1:38 PM

Happyface, Hello and welcome to the community. I hope that you find it helpful. I know that there are many people here who are very understanding and are always willing to help and listen. You will find out something very quickly and that is that we are all here for one another, it is a no judgement zone and if we can offer information based on our own experiences that may help you with whatever you are going through, we do so freely. I call this my pain community family because I feel like we are all linked together even though it is because of our pain and not blood ties. It doesn't matter though, you know when you come here, there will always be someone here who will offer a sympathetic ear and a shoulder to lean on. (You can lean on mine but just not too hard because my left shoulder doesn't work so good... LOL!!!) But, I still have two and always offer.

Jun 05, 2015 3:05 PM

Welcome to our community Happyface! This is a great place to learn, cry or vent, and gain/provide support to others. We love sharing some funnies too. 🙏🌼

Jun 05, 2015 6:29 PM

Profiler, I am keeping detailed records because of that. I've had enough experience with misdiagnosis in my 25 years. I'm one of those stubborn patients. I'm doing my own research as well. I do have trigger points, that was one of the first things I noticed was used to differentiate fibro from other things. I will be going to a good rheumatologist whenever I can get an appointment (3 month wait period, typically) who is also dealing with my grandmother who seems to like him. Fibro seems much more likely than just my original diagnosis of arthritis.

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