Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

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Sep 01, 2015 12:42 PM

Wanted just a pain journal but this seemed perfect! I hate being asked about pain and to explain every pain I have. I'm only 20 and I suffer from chronic pain. Hoping this will help to show what I'm going through,

Sep 01, 2015 3:59 PM

Fibro, I'm 34, had this chronic back pain for 4 years. Though I'm a decade older than you, I can only say it gets worse especially when you go to ER and doctors and they become judgemental. Most of my doctors did and they do comment about my age. You will definitely go through worse than what I had went through.

Only advice I can really offer is find a good doctor, don't be afraid to dismiss a judgemental doctor. Ask for referrals and they will take you more seriously I guess. You have a long journey ahead of you. I do hope somehow you find a way that you can maintain and manage a certain pain level. Only recently found mine but maybe a surgery is coming at the end of the month for me. Not sure exactly what my diagnose is. On my medicals, it just states chronic back pain so far.

Sep 01, 2015 5:04 PM

I'm really trying to be positive and get a healthy life style, I have pushed for referrals and second opinions when I felt I had been wrongly treated or diagnosed. Positivity is key I think

Sep 02, 2015 7:06 AM

ER doctors are usually judgmental, although I've never been prescribed opiates. "It's chronic pain. My job is to see if you are in a life threatening situation. You are not. You see many specialists. They must have a reason for not providing pain management, so I'm not giving you anything." I'm a Master's prepared RN, so I told her if it was one of my patients I'd advocate for her/him and asked her if she would let a family member pace all night for 48 hours without sleep. With that, she gave me 2 percocet and I got one excellent night of sleep and was able to function the next day, in pain, but I was able to think.

Sep 02, 2015 8:42 AM

Fibro0195, I'll soon be 54. In my 30's I developed DDD, osteoarthritis, and migraines, from multiple auto accidents. It was tolerable. When my girls were half grown I returned to college, graduated, and went to work again (2003). From the ages 23-45, I had over 22 surgical procedures. I worked until 2010 when I took a LOA for major surgery. That 1 surgery turned into 5 procedures due to complications requiring a year's recovery time, so I had to quit my job. I've not been able to return because my general health has continued to decline. My fibro symptoms started in 2008, 2 years before they found the paraovarian cyst ('10), and I'm convinced it developed due to the very high levels of inflammation that was showing in my bloodwork. I was dx with fibro in 2012 but throughout these last three years I kept feeling bad, worse than fibro alone explained. I pushed until my psych doc referred me to an endocrinologist and rheumatologist (my PCP wouldn't refer me). A few months ago I was dx with Sjogrens & hypothyroidism, both which share common symptoms with fibro, and other autoimmune diseases. Once you have one you can develop other AI diseases. I'm currently under Mayo clinic, to determine the cause of tremors, imbalance, dizziness, and changes in my mental function (2 MRIs are different, 2 the apart).

But through all of this I do my best to stay positive. My faith in God is what helps me do that. Getting under a pain care specialist & rheumatologist & endocrinologist were also very important for me. When I first saw the pain specialist my daily avg pain was a 7-9, then it dropped to 6-7. But after my rheumy doc put me on Plaquenil (sjogrens) my daily avg pain is 3-4. Are there bad days? Yes. I've learned to pace my activities with rest periods. If there something I can't do, I either wait until I feel better or I ask my hubby to do it. I've learned to say no to others, putting my health needs as priority. When I'm able to help others I do, even if it makes me hurt later. But only I know how my body feels and if I can't do something or go somewhere l tell them no.

Don't be afraid to do that for yourself. It may take you months or years to get your pain under control. Do what is best for you. I'm not on any narcotics because I have major allergies. I use Tramadol when I must, but otherwise I use Tylenol Arthritis or Aleve, and lots of Voltaren gel. Thankfully the Plaquenil actually helped all my pain in general. It's ok to not feel positive, to hurt, to want to vent or cry. But the mind is very powerful. Most of us are taking antidepressants and some anxiety meds; just another partof the fibro. Lack of good sleep is another. If you're having trouble sleeping without awakening through the night due to pain, it's going to stress you; stress = more pain, less refreshing sleep. My PCP put me on Ambien for sleep, and I was on it 7 yr before I started having negative reactions. I was weaned off using antidepressants & melatonin. My psych (new doc this yr) found my serotonin was imbalanced so he raised my med level until the blood work showed leveled serotonin; I'm only on 75 mg nortriptyline and that's not a large dose.

This community is filled with various ages, all with knowledge of diseases, suggestions, and wonderful support. I'm currently looking into "clean eating" because of foods that cause inflammation. I learned of this in this community. My endocrinologist doc wants me to try and lose weight, because body fat can also add to inflammation, so I'm on a 1200 calorie diet. I figured I may as well eat better too. I've removed all high sugar sweets, keeping only fig newtons and lots of fresh fruit, as sugar adds to inflammation.

Being diagnosed with any chronic condition can be overwhelming. Take it one day, one hour, one step at a time. We are all here to support you and each other. Go to www.Butyoudontlooksick.com (spoon theory shared via community member) & www.fmnetnews.com & www.living-smater-with-fibromyalgia.com for more info. (((Hug))) & you'll be in my thoughts and prayers. 🙏🌼

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