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CatchMyPain Community and Pain Diary App to manage chronic illness

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Apr 21, 2016 11:54 PM

Hi I am new to this app. and wanted to sort of introduce me and VENT my story some. Thanks for listening

I have been in chronic pain for years without any real help until this last year. I had to basically hit rock bottom to get anyone to believe me and I still find myself feeling the need to prove my pain.

In the last 18 Months, on top of the all over muscular pain, I have also had...

* a hysterectomy that almost killed me due to hemorrhaging weeks after

* stress due to my husband having a brain aneurysm repaired

* my 22 year old son from my first marriage threaten my life

* loss of our family pet

* my daughter in trouble with drugs, drop out of high school and move out, then back in after rolling her car (no injuries) then move back out to live with boy friend

* the ups and downs off co parenting my special needs stepdaughter who is at a emotional stage with several of her own mental and health struggles.

All the while trying to succeed at my very very high stress, mentally demanding and always changing job of 15 years.

But what kicked my legs out from under me happened in Sept 2015. My sister in law passed. She was my husband's 12 year yonger sister (34) a twin and the ONLY immediate family my husband and his brother had left. We all stood in the room and watched as they tried to revive her for almost 30 mins and we had to give the doctors permission to stop and let her go.

I held myself together and would even say I was internally proud to be able to hold up my husband ( the most wonderful, loving and carrying man I have ever known ) but days after the funeral I completely broke down. I could not form complete thoughts and the pain through out my body was more server then I had ever felt before. My husband was a mess and unable to understand what was happening to me.

I was sent off by my family doctor to a psychologist, was very over medicated and went on short term disability. Months later I ended up in the hospital with some very lovely elderly dementia patients for a few days.

This turned out to be my next turning point. The psychologist at the hospital listened to me and took me off the meds and got me thru the withdraw. I found new doctors who listen to my whole history and realised the trauma in Sept worsened an on going cronic pain issue that needs addressed and not a mental disorder. Also the hospitalization pulled my husband to my side where he continues to stay trying to help and understand.

So today I continue to be unable to return to work due to being in continuous pain, complete exhaustion and mental fog, but I have been to specialists had lots of testing and believe along with my new family doctor that I have Fibromyalgia. I am finally getting into to see a rheumatologist next month and should then, hopefully, have an actual diagnosis.

As relieving the last few months have been to my piece of mind, I am not physically feeling better and almost in a panic about the loss of my income over the past few weeks do to waiting on approval for insurance coverage after my short term disability ran out.

So that's me right now, thanks again for "listening"

Apr 22, 2016 6:27 AM

Welcome to the group! I'm new here also and could'nt have found a better group of ppl to chat with! I hope u have better luck with ur Rheumatologist than I have had with the two I've seen. Our hospital/services here are a bit of a joke! I've been dealing with my pain for 14 years now and have been told I have a few different ailments. Ankylosing spondylitis being one of them; it's VERY FRUSTRATING!

Apr 22, 2016 7:28 AM

Hello. I'm new as well. Well about 2 weeks now. I'm very sorry for.all you are too g thru. I too have fibro amongst other issues. In your circumstances I would do one minute at a time that's all you can do. Also, I have found some comfort just logging in and reading about people. Everyone here seems great and kind hearted. If you have to vent just do it.

Hugs and prayers!

Apr 22, 2016 8:11 AM

Thank you both for your kind replies and insights. I look forward to more chats here in the future. My happiest thoughts and wishes to you,.

Apr 22, 2016 1:23 PM

Welcome to our community family, all three of you! We do have a wonderful supporting group of new family-friends here.

MissMisery, your story was so moving I actually treated up. I'm not at all surprised the stress affected your pain. I worked until 2010 when I went out for surgery on an abdominal mass, which turned into 5 in 1 surgeries. Long story short, my health has gone downhill since with new problems yearly. Or sooner! Lol. I've got fibro, sjogrens, pelvic floor dysfunction & pelvic congestion syndrome, OA, DDD/DJD, and a long list of chronic issues that tend to affect each other; several for over 25 years.. I've put in for disability and waiting for a hearing.

It's been hard to adjust to my income loss. I ended up refinancing my car to get lower payments, but extending the time to pay. We also cut out non necessities or cut back to minimal plans. It's taken total readjustment of our finances, and bills get paid first, including allotments for doc appts. Then we eat, drive, and dress on what's left. It's been tough but doable. Like Sunshineplease suggested, take it one day at a time, one step at a time. I'm glad you now have doctors who understand and are working with you on the chronic pain. Depression & anxiety seems to be fairly normal for most of us fighting chronic pain. Just know you are among friends here, who truly understand. There's no need to apologize for venting, voicing, or unburdening yourself to the community. Our shoulders are here for each other. And we all need each other.

Dleigh, I have a friend who's wife has AS. She's done fairly well until the last year, when she's developing stiffness. She does gentle stretches multiple times a day and says it helps with that.

Something to keep in mind is (as i was educated by others) one autoimmune (AI) issue can and often leads to another, like my fibro, hypothyroidism, & sjogrens. I'm not sure if you have seen the websites on fibro, but I'll share them. Someone else shared them with me over a year ago. I wish you all a blessed weekend. Hugs & prayers! 🙂💕🙏🌼


Apr 22, 2016 1:35 PM

Thank you so much.. I do also have hypothyroidism, migraines, asthma, TMJ, sleep apnea, insomnia, adrenal fatigue and lots and lots of environmental allergies. Most of these I have had for over 10 years anding this fibro pain has just been so discouraging and the memory/brain fog just frankly scares me.

Apr 22, 2016 1:44 PM

Flappyslady - u r spot on about one thing leading to another. AS is just one of the things I've been diagnosed as having, it has come to the point after 14 years where I've learned to take the happy moments when they come and TRY VERY HARD to lead a some what normal life for my son; it's not his fault his mom hurts all the time and I I find I get irritated easier! It seems with each doctor's appointment I go to the harder it is to stay positive! None of them seem to care about pain control nor do they seem to understand that after 37 years on earth I do know what my own body feels like!!!

Apr 22, 2016 2:47 PM

Oops... treated = teared up. Lol

The fibro fog drives me nuts and finally after 6 years my hubby is able to fill in the blanks. Yay! Unfortunately for me it's not just fibro fog. A neuro-psychologist (2 actually) did tests on me and I have mild dementia/memory loss. It scares me to death because my dad was dx with Alzheimer's last year at 85; his mom got it at 78. I do NOT want it! I've watched too many family & friends of family due with it. When I'm having a bad mental day I'm usually not present. I icky come online and read posts, but I respond to very few. I've noticed on bad days I can't the right words to say what I want, so I just stay quiet. So yes fibro fog sucks big time!

Apr 22, 2016 4:20 PM

I am so sorry you are going thru so much also.
Monday I see a specialist for sociological testing. It will be intresting to see what becomes of that.

Apr 22, 2016 4:27 PM

Thank you! I try not to get stressed because that only makes it worse. I also remember God's right beside me every step. I'll be praying for your appt Monday. Have a good weekend! 🙂💕🙏🌼

Apr 22, 2016 5:32 PM

I have no thyroid. We were downwinders of Hanford Nuclear power when I was a baby & my thyroid was removed. I find all these health stories so fascinating, especially when all the symptoms start running together. I also have extremely annoying dry mouth, dry eye, dry others places and bad itching in ear canals as well as salivary gland issues. I have problems with fatigue & aching joints and that horrible chronic I-wish-I-could-die nerve pain. You & my closest friends have nearly convinced me I should my appt. with a rheumatologist. It just seems so futile as docs don't listen real good. It is like they have to get you out of that exam room as fast as poss.

Apr 22, 2016 5:48 PM

Silvery pls don't give up on doctors, your right they push us thru like cattle but you know how you feel and it we don't push back then nothing with change for any of us. For sure it is super frustrating to keep complaning just to keep getting back news that they don't find anything wrong, but that process has to happen to eliminate and treat other possible related conditions. Keep pushing for help. My personal experience leads me to believe that a good general/family doctor who will coordinate your care with specialist is really important to find. I just fially started going to one after the other with my written account of systems and copy of medical records until I found someone who took the time to read them and care. Some times I have to wait an hour past my appointment time to see her but I know it is be cause she cares that it can sometimes take her longer. My trick is plan out my appointments as far in advance as possible and get her for am slot for that day...lol works most times so long as no one has a baby that morning 😀

Apr 22, 2016 5:51 PM

Sop need spell check on here.
Systems should be symptoms
Get her for am slot shold say get her first AM slot

Apr 22, 2016 5:53 PM

And... sop is so
That's it done typing today

Apr 22, 2016 11:45 PM

Hi MissMisery, welcome and I'm so sorry you had/have to go through all of that. I too am not surprised that all that stress would exacerbate your chronic pain. At first, I attributed my own pain to a psychosomatic symptom of my PTSD, but it's gotten bad enough that I'm fairly certain it's a separate problem that has simply been exacerbated by stress and trauma.

You will be in my prayers and I wish you sleep tonight! In fact, I wish sleep to everyone here 💜

Apr 22, 2016 11:54 PM

You have an awful lot going on in your life! I have a lot of similar health issues. I was also just diagnosed with fibromyalgia, but thankfully found a regular family doctor with enough knowledge about it, rather than going to a specialist, and I am already being treated and improving somewhat. Having experienced many traumatic events and deaths of close friends, I feel that all of that stress really works its way into your body. I feel that I could never relax my body even if I wanted to, and I know part of this disease just has to be mental. The best advice my doctor gave me during my initial visit was to enjoy my life. It's ok to do things for yourself. Visit the beach, eat ice cream, play with puppies, go to a salon or spa, whatever it is. Just take care of yourself. Don't make everyone else's problems your own. Do what makes you happy.

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