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Pain realization

Jan 20, 2019 12:56 AM

So. Hi.
I’m new. I hadn’t thought of myself as a pain patient, even if I’ve spent most of my childhood thinking something is “different”. I could never run as fast, I got exhausted far quicker than normal, I hated moving much. But I was generally considered a lazy, smart kid.
I got migraines and endometriosis diagnosed in my teenage years. But my wobbly knees started to hurt more and more. My spine is curved, my wrists, hips, ankles and knees are periodically painful, it’s started in my shoulders and elbows too. So I did my research and am now on a hunt for answers.
It’s funny how my fiancé has EDS and yet I’ve been in denial of how many of his symptoms I have - just not as badly.
Anyway. How did you cope with realizing something is not right? Because I’m a bit petrified.

Jan 20, 2019 8:23 PM

Hi, I’m new here and recently diagnosed with fibromyalgia, and struggling to come to terms with it myself. It has taken a massive toll on my health physically as well as mentally. But I always knew something wasn’t right from a young age, but always put it down to something else, never this! even coming up to my diagnosis I never expected this, it’s petrifying, and the various meds they’ve tried, anti depressants I have a huge chemical sensitivity to but persevered and still no joy, anti inflammatories, opioids, as of yet have had no joy, now im trying patches, but feeling like there’s little if any relief, and there’s no hope.. struggling to cope with it all, so you’re not alone but I’m sure for us both we’ll get there 🤞🏻 I hope x

Jan 21, 2019 8:54 AM

I had a normal childhood with pain your normal illnesses. So I can’t relate to suffering with pain as a child or teen. I’m so sorry for what you’ve gone and going through. My chronic pain came as an adult after having children. I suffer daily now and have been for the past 4 years. I’ve not accepted my present condition. So my daughters have diagnosed me with Adjustment Disorder along with my laundry list of other health issues. Adjustment Disorder because I haven’t settled into the chronic pain chronic illness. Interesting how they look at you because you can’t accept your body has failed you!

Jan 21, 2019 8:57 AM

Sorry... correction... my doctors diagnosed me with Adjustment Disorder.

Jan 23, 2019 8:40 AM

Welcome to the community Joshie & Alice86! You're in the right place for support, whether to ask questions and advice/suggestions, or just to cry and vent in a safe place among others who understand.

I too had a normal childhood and didn't start having health issues until my mid to late 20's. Even after 2 kids my worst problems were OA & DDD in my spine & knees, and dry eyes/nose/mouth, and female cycle issues (family heritage). It wasn't until 2007 that I started having chronic pain, after having had multiple unrelated surgeries. In 2008 I knew something was wrong in the chronic pain area as well as my bowel & bladder function. It wasn't until 2010 they diagnosed a 10 cm mass in my abdomen (adhered to every internal tissue/organ it could & led to more problems and disability from complications). My chronic pain worsened (diagnosed as fibromyalgia) and so did many other symptoms like the dry eyes/nose/mouth. I kept pushing doctors for answers, and finally after developing an oral rash on my right cheek (misdiagnosed by 2 doctors) an ENT did a biopsy and I was diagnosed (dx) with Sjogrens (I've suffered oral yeast infections for decades...part of Sjogrens) & later hypothyroidism, not to mention a slew of other health issues that jumped on board since 2010. Over the past 10-20 years, I now have a very long list of health problems, many causing chronic daily pain. I also take many different meds for these problems. But I'm never pain free, having as many bad as good days on average, and more worse days than good during flare ups. These can be triggered by weather, activity, emotional stress, or just internal changes due to my autoimmune issues.

However I have learned through others here, & a few very good doctors, various ways to cope better and help enjoy life on my good days & pampering myself on the bad. Part of coping is being able to express yourself with others who will not judge you or say things that belittle you or what you're going through (this community is a good place). Trying new supplements or dietary changes has also helped.

For instance, eating processed sugary foods & many carbs are known to cause or increase inflammation. I've tried to cut back but never completely stopped eating candy and ice cream, pies & cakes until my hubby was dx with diabetes Christmas; I've been eating only fruits for sweet cravings & following his dietary needs for 3 weeks. Although I still hurt my pain level has decreased by 2 points; instead of a 6-8 it's a 4-6, constant except in flares or excessive activity (always increases my pain). And on top of that my IBS-C has calmed way down, and my GI system is functioning more normally and healthier. I take potassium, vitamin D & folate (I'm super deficient in both, the latter one genetically defect), and calcium, as well as Cosamin ASU (doctor recommended 3 of these), and they also make a small difference in my pain levels. I actually stopped the Cosamin ASU a month and my joint pain increased! It's taken nearly a decade to decrease my pain to a tolerable level. And for most of us who have been here awhile it's the same, years of trials and errors to find what works best for each individual. Be open minded to try different things until you find things that help you.

Doing things you enjoy that relaxes you is important too. Coloring or other crafts, reading, walking or riding a bike (if able), sitting outside watching wildlife, or baking, or watching a movie; anything that helps you escape even a little while is beneficial. Trying to stay positive, that there will be good days helps me too. On bad days I rest and don't allow others to make me feel guilty; it took years of self discipline to learn how to ignore negative people (they are in essence prejudicial people, judging us because we are different). My rheumatologist scolded my husband for being judgmental in the beginning of my battle, and he has been my biggest supporter since she explained things so he could understand there are many people affected by invisible chronic pain conditions. It was funny seeing him shrink under her scrutiny!😉 If you have unsupportive family or friends, ask them to go to your appts with you and then ask your doctors to help then understand. And another important piece of advice is having supportive doctors. If your doctors are not supportive & helpful with suggestions, then maybe finding a new doctor would help. Take it all one day, one hour, one step at a time. I wish you the very best as your journey begins on finding ways to cope and enjoy your good days. Hugs love & prayers for strength & courage in your fight to have a somewhat enjoyable life! 🙂❤🙏🌼

Mar 14, 2019 7:06 PM

I'm struggling with this right now. I'm not sure what is wrong, and I dont have insurance so I can't see a Dr.

My mother claims she has Fibro, and I have doubted her because she is an opiate addict and I believed she traded her street habit in for a legal habit. But over the last year, I have begun to wonder if she really does, and now I'm developing it too.

I was laid off from a great job 3 years ago and got pretty depressed and inactive after being a physically active person. I chalked the pain that began to develop up to being out of shape and not moving enough. But I landed a decent job last year and it has me back in shape and moving constantly. Instead of getting better, the pain has increased steadily.

I found this app today because this week it's reached a point that I can't deny it anymore. Something is wrong and it's getting worse by the day. I started taking advil every few hours today to get a break from the pain of working with joints that are screaming at me constantly. I don't know if it's Fibro, or arthritis, or what. But it's really rough to realize it isn't going to clear up. That pain is something I will have to deal with from now on, apparently.

The biggest fear? Not being able to keep working now that I'm finally in a job I enjoy and supporting my family on my own again.

Mar 15, 2019 8:15 AM

Welcome to the community Cole2279! I'm sorry to hear you are struggling with chronic pain too. Keeping a journal of your symptoms can help your doctors find the answers. And you may read stories on here and think it matches you, so always research further anything you think might fit and if it seems to be more of a fit discuss it with your doctors. Don't get discouraged trying to find the answers. It's taken many of us years to get the actual dx (diagnoses). And it may mean seeing many doctors before finding one who listens and doesn't brush it off. No matter how small or unimportant you think it might be, write it down. Many illnesses have common symptoms, which is why it can take so long.

Sadly, due to many overlapping symptoms I have found out I have so many issues that I now have a specialist for every body region: rheumatologist, endocrinologist, orthopedist, cardiologist, ENT, audiologist, pulmonologist, psychologist, psychiatrist, urologist, gastroenterologist, dermatologist, gynecologist, etc (you get the picture). I pray that won't be you! If you suspect arthritis, a good place to start is an orthopedist. They can do x-rays & run blood tests that may determine if s it's OA (osteoarthritis) or if you need a rheumatologist. Unfortunately I have OA and there isn't much we can do for it except trying to stay as mobile as possible & taking OTC meds to help. I can't take NSAIDS so I use Tylenol arthritis 2-3x a day, but it can damage the liver so be careful if you try it. Eventually OA damage to joints may require surgery to clean out or replace joints. I don't have RA (rheumatoid arthritis) but meds can slow down the damage it does, but it can't be cured or stopped either. I see my rheumatologist because of my Sjogrens, an autoimmune issues (AI - I have multiple AI issues too), and the Sjogrens makes my joints painful, where my fibromyalgia makes my muscles painful. It took me 3-5 years to get these illnesses identified, but I wouldn't give up, because each time I got one answer I just knew something else was coincidentally happening too.

Sorry for writing so much. I'm just trying to give you examples of what it might be like for you to get answers and find ways to cope through your pain. I worked 7 years before becoming disabled (due to a mass that was missed and caused all the inflammation in my body). I would love to work again but for every one issue I get calmed down two more flare up. No one would hire me like this. I have found changes in diet, like less sugar & starches, have decreased my inflammation. Also, not being still too long is key for both my OA and fibro; the longer I don't move the stiffer and more painful I am when I do. On the flip side of that is I can't be on my feet too long or it triggers other painful issues. Like I suggested already, if you don't journal symptoms, start with each symptom, what area of the body hurts, what you were doing when the pain began (noticed pain), what you did to bring relief, what level of pain (1-10) etc. The more info you keep the better picture you provide the doctors. Hugs love & prayers that you will find answers and coping methods to make your days easier to get through! 🙂❤🙏🌼

Mar 15, 2019 4:53 PM

Thank you for the warm welcome, Flappy! I'm on track with pretty much all you suggested, excluding the talk with a dr. As I said, I have no insurance. So until I do, all I can do is the best I can do. I quit smoking, caffiene, and alcohol a few weeks ago in the hope that a cleaner lifestyle would help. I've always eaten fairly well, but I'm really focusing on fresher foods now and taking supplements as well.

What you said sounds so familiar when it comes to movement. I've always stiffened when sitting still, but the last year it's gotten far worse. Now in the last few months, it's become downright awful. If I sit for so much as 5min. it is pure agony to get back up. It used to smooth right out within a few steps, but now it's even hurting to walk.. even after being in constant motion for hours. (I work for FedEx delivering packages, so I'm always moving during the day)

It's so crappy to be so exhausted and want to sit down, knowing how awful it will feel each time you get back up to do anything like tend to the kids or just use the damn bathroom.

Mar 19, 2019 8:33 AM

It sounds like you're taking good steps with your food choices. You can only do so much, that for sure. Hopefully you can get a doctor soon! I know it's hard to do while driving but when you are sitting still like a chair sofa or recliner, have you tried moving your legs and arms at the joints? I make small movements, and even lift my legs while in the recliner. It does help slightly with not getting as stiff.

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