Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

New to the group

Jul 26, 2016 6:24 PM

I have added this app several days ago but have just been reading and keeping a diary! I just wanted to say hi to everyone!

Jul 26, 2016 8:58 PM

Hi and welcome to the family. We have a great group here with a huge knowledge base of dealing with all things painful. Pull up a chair and stay awhile. Everyone is truly caring and has the best of intentions. Tell us about yourself. Sorry that you are in pain I wish we were all sitting around a lake skipping stones and eating ice cream instead of meeting on a pain website.

Jul 26, 2016 9:22 PM

Hi my name is trish, im 49 and a mother of a 28 year old daughter. I finally had to quit working in 2014 due to my chronic pain and other health issues. Thank god i can draw my social security or i would still be killing myself working. I have been widowed since 2003 and have not remarried and probably won't. I hope i can make some good friends on here and hopefully some near me to hang out with. Im a hermit and rarely go out and sometimes the walls close in on me. I enjoy meeting new people and learn from them. Im a caring person and i dont have a bad word to say, i accept them for who they are, i dont judge by their size, color, financial status. God all of us in his own image and we all bleed the same color.

Jul 27, 2016 3:42 AM

Hi my name is Annette I am 38 yrs old I have been married for 10 yrs and have been with my husband for 15 yrs. We have a son he is 14. I was diagnosed with Fibromyalgia + last summer( after being in pain for 2 yrs.)The plus being unknown at this time.i have several other symptoms that are not related to Fibromyalgia. I have seen so many specialists and they are all puzzled. I see an internist in November. All the doctors believe I either have an auto-immune disease over and above my Fibromyalgia or some think I am making it all up! I haven't been able to work in 2 yrs so financially we are struggling. I have been fighting for disability for over a year now..thank you for welcoming me to the group it is a very lonely life!

Jul 27, 2016 5:02 AM

Hello everyone &
🌷welcome Anna, glad u found this great community 🐴

U know ur body🐔 better than anyone else sweetie. I felt like a crazy woman😮 for about 10years... ☺ but finally i am listened to without feeling like the little men 🚑in white coats 🚑were gonna cart me away lol!🐔

Its not in ur head, 💕just calmly keep standing ur ground😉...until someone hears u🤗. Medicine is evolving constantly📚... and we have all been told🤔 the most rediculous😲 things over the years! In 20yrs i have been told "there is no pain in MS", to now... it is accepted that MS causes neuropathic & muscular-skeletal pain! 🤕 (it wasnt in my "head" either!) Lol 😋

Point is... do ur research📚 on FACTS...print it out📄 in black n white... and take ur file📒 with all relavent info to back up ur case... and take it to ur appointments & Question ur doctors about ur findings💻🖲... u are intitled to ask "why?" And doctors should know that information🖲💻 is available to everyone online... and that they can now be held accountable to what they say!😉

Doing this pain diary📆 every day is brilliant.📊 I have shown my pain doctor and he said its a great tool to show📈 a quantifiable cross reference of pain vs. Fatigue vs. Mood ☺ and that the 📉diagram is really detailed 📅yet simple to use.

🐔(I print it out 🖨in case my phone dies... 📲or i have no internet connection at the drs office) 💻🖱

🌼gentle hugs🌼

Jul 27, 2016 12:29 PM

Thank you Lulabel! All your i information and feedback is greatly appreciated!

Jul 27, 2016 12:33 PM

Welcome to our community family, Anna1978 & Pugmom! As the others have said, this is a great community. I too felt so isolated & alone & judged, before I found this app. I never knew I'd find a world of new friends who truly understood what living with chronic pain is like, that it changes daily and sometimes hourly. I just hate the thought of so many of us who struggle just to get through a day at a time. And the shock of so many younger people! I'm 54 and haven't been able to work since 2010, and I started with chronic pain in 1991 (spine). After 2 neck surgeries I rebuilt my strength & endurance and worked from '03-'10. Fibro took hold in 2007, but a tumor in 2010 started my health train derailment. Lol Even after my fibro dx in 2012, I knew something else was going on. I developed an oral trash that was dx as sjogrens in 2015, but from 2010 on I've gained new dx every year; 3 autoimmune. So no matter how many doctors try to convince you it's in your head or there isn't anything else they can do, stand your ground and keep searching until you find a caring doctor! You will never be alone in this community. Hugs love & prayers your journey to dx & treatments & alternate coping methods is a short time! 🙂💕🙏🌸

Jul 27, 2016 2:24 PM

FlappysLady81
Thanks for your inspiring story! I too suffer from recurring oral thrush and my lymph nodes in my neck have been swollen for over a year ( very painful and hard to swallow) I was supposed to get a biopsy taken of my lymph nodes but doctors refuse to as it is " too dangerous" and not worth the risk! Meanwhile I am left suffering. It doesn't help I live in a very small town where Fibromyalgia isn't even recognized! I had to get a diagnosis from a bigger city! It's just so frustrating when I know there is something else really wrong with me( not serious enough to get anyone to take me seriously) sometimes I feel like no one really gives a shit enough to take the time to help me😥

Jul 27, 2016 7:56 PM

Anna, my ENT doc did an oral punch biopsy in 3 locations from the inside of my cheek. According to the rheumy doc he should have done 5, but all were positive for sjogrens. And thrush can be a symptom of sjogrens. You may want to see an ENT doc; have your primary refer you if you don't have a rheumy doc. Sjogrens not only affects ts the eyes nose & mouth, by setting them out, it can affect internal moisture bearing organs, and it can cause pain, like fibromyalgia. I'm not saying you have it. But a buccal biopsy may be able to tell the same as the lymph node biopsy, because my ENT talked about making sure he cut out lymph nodes for the test. Fair warning though... The pain after the numbness white off was worse than any major toothache I've ever had, for 2-3 days!

Jul 27, 2016 9:02 PM

Thanks FlappyLady81 for the details! I have seen an ENT and he refuses to do a biopsy of my lymph nodes in my neck because it is too dangerous and not worth the risk..it's so incredibly frustrating!! Now I have to wait until I see the internist in November..I am so incredibly frustrated! But I appreciate you telling me your story. I don't know very much about sjorens.. what are other symptoms? Is there treatment? Do you suffer from chronic pain as well?
Hope to hear from you soon
Xo
Anna

Jul 27, 2016 9:17 PM

What about seeing a general surgeon?

Jul 28, 2016 12:01 AM

I have seen 2 surgeons , a psychiatrist, an ENT ,a Rheumatologist, pain specialist,dermatologist,a respiratory specialist,dentist, optometrist,neuro surgeon,..I have so much blood work done( I don't know which ones) I also have High inflammation in my body (ESR)a high white count cell a low red blood count.high platelets.a rash on my head( diagnosed as acne) but been on two different medications and cream and now it's all over my scalp. I have had these symptoms for over 2 yrs. A recurring oral thrush and swollen lymph nodes around my neck and clavicle and inside my throat for over a year. I have had Two MRI ,4 catscans ,4 ultrasounds ,several mammograms ( lump in breast/ but benign)and a bone scan.
I have a cyst on my left ovary that is 3.3 cm but my doctor is not concerned.I also have a really difficult time breathing since I had bronchitis over Christmas . After several other tests I discovered I have mild acid reflux but under control with medication. I also have scaring on my lungs and do not have full capacity in my lungs.Believe me I have fought to see almost every doctor we have in my city and they all agree something is wrong with me over above the Fibromyalgia but nobody knows what?I really feel like giving up trying to get answers but it's more pain on top of my Fibromyalgia that could possibly be avoided. It also makes me feel like I am completely crazy but o know I am not..sorry for the whole life story! Please don't be scared away by everything I just said?
Xo Anna

Jul 28, 2016 7:05 AM

@anna1978
Hello😃 Welcome and thank you for the quote.
I am 60. In my head I'm decades younger but my body feels 130yo. My Dx are: MS, Fibromyalgia, IBS, osteo arthritis, stomach lining bleeds, back and neck disc issues, bone spurs, plantar faciitis, and other stuff I've successfully repressed for the moment 😶.
I've been crazy ill from the heat and literally unable to eat for 3 days, yet I still (and I've had these issues for decades,) I Still, beat myself up daily for not functioning better. (Though I'm understanding of others.) So thank you.
You'll find kind understanding and support here.
{{Hugs}}. (That ='s gentle hugs.)
Keep coming back.

Jul 28, 2016 3:18 PM

Hi I'm new to the group as well.Ive just been diagnosed with FND, Functional Neurological Disorder and I'm trying to get my head round this, which is pretty hard. I also have Fibromyalgia , Osteoarthritis, Raynauds Disease, OCD, Depression and Aniexty, the list goes on lol... xx

Jul 28, 2016 3:41 PM

Welcome to the group Sal!

Jul 28, 2016 3:44 PM

Hi Anna
Havr you heard about or discussed Sjogrens Syndrome at all? Oral thrush and swollen glands are a symptoms of that. I have primary sjogrens and secondary fibromyalgia so it is really hard to tell which causes what. Blood test or schirmer tests can help diagnose. Might be worth asking the doc. It is an autoimmune disease and I have ti take immunosuppressants every day now (I'm 35). X

Jul 28, 2016 11:07 PM

Thanks Kate88 I will ask my internist when I meet her in November!

Jul 29, 2016 2:26 PM

Welcome Sal!!

Anna, I'm just getting back online today. I think I've had sjogrens for a long time, fighting dry eyes, noise & mouth since the early 2000's. I started having all over pain in 2007, and the Pcp hinted at fibromyalgia. After surgery to remove a 10cm tumor in 2010 I continued to get worse with pain. He officially dx fibro in 2012 and tried me on multiple patch drugs that are supposed to help with fibro & depression. Needless to say, with all my other meds allergies I reacted to reach of them as well, but cymbalta was the worst. I kept having random lymph node pain all over, and thrush that all the docs blamed on my asthma meds. Then in 2014 I developed a large rash on the inside of my cheek as well as red painful tiny blisters & lots of cracks on the tongue. After 4 doctors my rheumy doc sent me to the ENT who biopsied my mouth. That happened in April 2015, and I've been on plaquenil for Sjogrens ever since. I seem to get sjogrens flare up symptoms, of blisters & cracks on the tongue as well as extreme fatigue & joint pain, which generally occurs about 3-5 days before I get worsening all over tender point & muscle pain. I haven't been having a flare longer than 2 weeks until the one that ended last week; just over 3 weeks. I'm contributing it to the stress I'm under from surgery in May and another on Aug 8th. We all know stress worsened all out conditions. I had no idea it was affecting my joints until my PCP examined my fingers swelling and painful joints, then he commented, "Sjogrens tends to settle in the finger joints first. I hope this explained my sjogrens symptoms well for you, and that it's helpful. Hugs love & prayers! 🙂💕🙏🌸

Jul 29, 2016 2:36 PM

This is an interesting link I came across researching sjogrens...

http://www.myalgia.com/sjogrens.htm

Jul 29, 2016 7:08 PM

FlappysLady81 Thanks so much for all the information! I have cuts in my tongue as well the ENT said it was called fissured tongue but he said so many things could be the cause of that!I also have lost taste or things taste bad. I can't eat anything spicy or it burns my tongue.I have noticeable lymph nodes in my throat as well as these little white bumps everywhere. Anyway there isn't much I can do until I see an internist in November but all this information is for me. I am hoping the internist is a little bit more knowledgeable and that she has the patience to find me some answers. All the other doctors dismiss me without getting any help. At this point I have trouble swallowing almost anything and my lymph nodes in my neck( I have so many) they hurt and a causing my neck to be so stiff! You have been so helpful all your symptoms seem similar to mine. I am not saying I definitely have sjogrens but atleast I don't feel completely crazy having all these things go wrong all at once. It is hard to know which symptoms are related because there are so many little things. I wish you the best!

Jul 29, 2016 9:19 PM

I forgot to mention that I also have had GERD for over 15 years, and it's been bad the last 3. I've been having choking, coughing, and swallowing problems. Last fall the GI doc found an esophageal stricture and used a balloon to dilate it. In January the PCP has me do a swallow t test and I had a sliding hiatal hernia; the test said small. Then i had a repeat endoscopy (EGD) and the GI doc found I have barretts esophagus as well as the esophageal stricture closing back thought. He redilated and then referred me to a specialist because barretts esophagus can turn to cancer if not watched. The new GI doc did surgery in May, repairing the hernia (much larger than swallow test led to believe) and did a fundoplication, to wrap the stomach up higher around the esophagus, all in an effort to reduce the GERD which is the cause of Barrett's. Since my surgery I've had zero GERD, even eating rings and Mexican food; both use to nearly kill me.

Jul 29, 2016 9:34 PM

FlappysLady81
Wow that's so intense I think you are talking about acid reflux when you refer to Gets? I have acid reflux as well I have been on dexilant for the past 6 months and that's helped me a lot! Wow you have had it all! I am sorry you have been through all this! It does make you a stronger more caring person ..I am glad you are able to eat again!🍲🌮lol

Jul 29, 2016 9:35 PM

I meant GERD#&@* auto-immune correct!!!! Hahaha

Jul 29, 2016 10:37 PM

GERD is gastro-esophageal reflux disease; chronic reflux. If your symptoms change let your doctor know. According to both those GI docs, the swallowing issue was caused by the stricture, which was caused by the barretts, which was caused by the acid reflux, which was caused by the hiatal hernia... A vicious cycle. 😉 Thank God they found it before I developed cancer.!

Jul 29, 2016 10:37 PM

Auto correct is pissing me off !!! Not auto immune.....I am not writing anymore! Hahahaha

Jul 29, 2016 10:37 PM

GERD is gastro-esophageal reflux disease; chronic reflux. If your symptoms change let your doctor know. According to both those GI docs, the swallowing issue was caused by the stricture, which was caused by the barretts, which was caused by the acid reflux, which was caused by the hiatal hernia... A vicious cycle. 😉 Thank God they found it before I developed cancer.!

Jul 29, 2016 10:41 PM

Thanks for the update! Yes very thankful that they caught it in time! Xo off to bed take it easy ..thanks for all the talks !

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