Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Confused & Angry

Aug 28, 2015 12:03 AM

Are any of you who have Fibromyalgia find that you don't have any balance in your daily life? Prior to the deterioration of my body, I had a routine, balance and my life was manageable. I could deal with stress (calmly) and handled just about anything that came my way.

Now I feel that I've lost all of it. Keeping appointments is a big ordeal in itself. Not even my family understands where their Mother went. Can someone give me some sort of advice

Aug 28, 2015 1:34 AM

Don't have fibro, but my illness got me in a wheelchair. Went from straight a student to cs and incompletes, plus 50+ days absent. Is confusing and frustrating, yes. Just try to remember you're doing your best, and that's what you have to work with. Pushing too far can bring more issues than it temporarily solves, like a flare.
Both my parents have chronic pain (I'm 15 now) and I still love them more than anything.

Aug 28, 2015 7:02 AM

I completely understand, some days it's hard to function, I'm a full time student and have found it hard going. I take each day at a time now, as for Appointments, that's even worse. I don't always know how I will feel on one specific day so there have been times I've had to cancel as I cannot physically move :/ sending you hugs xx

Aug 28, 2015 2:02 PM

Thank you both for taking the time to respond and giving encouragement. That alone, no one understands can get to a person. I'm really greatful God directed me towards this site. 😸

Aug 28, 2015 2:26 PM

Hi, I've had fibro where it interferes with my life for over 15 years. I lost my job, freinds, family, and more. I started a wonderful support group/family online and it helped so much. But it ended about 7 years ago. It seems like you and gore in the same place I am right now but the good news it comes and goes. Sadly that doesn't help when you are depressed and losing hope. Try and find something you enjoy doing for me it's crafts and reading. Go slow on bad days and try to leave guilt out of your life. Instead of thinking what your family has lost think about what they have and gain from you. Hugs and support to you

Aug 28, 2015 4:57 PM

Finding people who understand your levels of pain and frustration/anger is key I believe. It's hard for people who don't suffer like this to have any idea (unless we kicked them very hard of course 😁) what we go through, they often think we're just moaning or being lazy because w scant do the things we want to or say that we hurt. I always say that to people who question my pain levels, if you lived on day of my life, with my pain levels, you'd be in a ball on the floor begging to have it taken away. It usually shits them up lol. So finding people that know exactly what you're going through and experiencing is good, at least you can vent and we understand xx

Aug 28, 2015 5:16 PM

I never knew a sight like this exisisted. I thank God for directing me in ya'also direction. Sometimes I feel like a hypochondriac, 1st graves disease, then OA and last Fibromyalgia. I think if one more person says "what don't you have?" I'll scream. I appreciate everyone sharing, the encouragement and support. It may sound silly however, I feel less anxious.
Is there any meds out there, RX or natural that can give relief to continuous mid back (severe) pain that never lessens? Thank you for being there.

Aug 28, 2015 5:25 PM

I didn't either until today, thankfully someone shared it on a fibro page. I understand that also, you can actually see people roll their eyeballs when you tell them what's wrong, and that's disrespectful. We are human beings, we have illnesses and issues, we didn't choose to be this way. I'd give anything to have one day pain free and people need to understand that, it can be very frustrating when they don't. But we are here for you and you are always very welcome :)

Pain relief wise, until you can see your doctor, have you tried heat, I often find that helps a little with my back. Medication wise it will all depend on what your doctor thinks, some try to give you the bare minimum and some are really helpful. But for now, if you are allowed to take them, possibly anti-inflammatory such as ibuprofen and heat. I'd recommend a visit to a health professional though as I'm not an expert or qualified, I just know what works for me personally :) xx

Aug 28, 2015 5:40 PM

Right now I'm taking oxycotine, oxcodone, asthma meds and heart meds. But this one spot in my back isn't getting any relief regardless. My insurance company decided no more soma or xanax. So now there's that pain that makes me want to punch someone & my anxiety is so bad, I can't talk without crying. I think I'll check for something all natural, otc, and see what I can find. If nothing else may I can get this anxiety under control.

Do you work anymore (you can tell me it's none of my business). I would love to be able to do something to help bring g in money. I've always been the bread winner, asking if I can buy something, SUCKS, lol.

Aug 28, 2015 6:20 PM

Tinyboo, welcome. I think everyone gets frustrated with the "now what!" I've had DDD/osteoarthritis since the 80's with 2 neck surgeries to fuse discs. Then I developed asthma in 2001. I was really healthy until 2008-2009 when a mass began to grow causing inflammation havoc in my body. I had it removed in 2010 and ever since it's been one diagnosis after another, more and more symptoms. I could deal well until the added on's this year to the fibromyalgia (caused by surgery). I'm learning a lot from others here, especially how once you have 1 autoimmune disease you can get more... I did, sjogrens and Hypothyroidism.

Some suggestions for treatments I've tried and it worked, while others I couldn't really tell. I'm on magnesium and D3 due to others here having good results. My rheumy doc put me on Plaquenil and its helped the sjogrens and fibromyalgia pain. I peace everything I do now. Like my docs want me exercising 30+ minutes a day but I break it into the sets of 10 minutes each. For every 1 your of activity I rest 10-15 minutes with my feet up. I have edema and venous reflux so I must elevate throughout the day of the swelling causes terrible night pain. Anyway, my brains in a funk right now so hopefully others can give more suggestions. 🙏🌼

Aug 28, 2015 6:31 PM

I think for now for immediate use, definitely heat, even if it alleviates it just a little. Thing is because we take so many painkillers, we have to be very careful not to interfere with them by taking over the counter or natural. It's a right royal pain though when there's that one niggle that just won't shift regardless of how many meds you've taken. I don't work at present (I don't mind you asking at all 😊) but I'm a full time student with 5 kids (4 living at home). Some days I struggle with uni and it's hard but it's actually one of the things that have kept me going. I had my own cake business as well but had to give it up because of the pain. It makes me sad because I used to enjoy making cakes and decorating them (that was the best bit) xx

FlappysLady, I have DDD also but in my lower lumbar region, on the list for a fusion. Just curious as to how long they say for recovery xx

Aug 28, 2015 6:55 PM

From what my husband's Dr. Says, you'll be up & SLOWLY walking the next day. Full recovery can be 6-8 weeks. That's if you follow all thr Dr.'s instuctions. Let me know when you go in for that.

I think I miss being able to garden the most. I love crafting, painting and scrapbooking. If my back didn't litterly freeze up, I could enjoy it. My arms get so heavy or hands won't work when I'm trying to cut paper and that in itself makes me mad at myself. He'll who knew a pai t brush could feel like it weighs 10 pounds. Lol. I have learned to use different gadgets I swore I'd never buy. Whatever works, the joy at the end is worth it.

5 kids???? I pray your husband is very hands on, if not, what's your secret? I'm so happy God led me here, you all have made the last 2 days unlike any in the last 10

Aug 28, 2015 7:07 PM

Oh heck, 6-8 weeks. I had a partial discectomy last year and I was up and about quickly, although I know I pushed myself more than I should have. I'm hoping I don't have to take that amount of time off Uni as I'm going into my final year.

I know, it's heartbreaking having to stop doing what you love, I was training to be a midwife about 4 years ago now but had to be medically withdrawn from the degree due to passing out, I was deemed as unfit for practice due to possible endangerment to patients if I passed out mid delivery. It devastated me as I loved it, and I was doing really well. Took me a while to get over that, but I wasn't going to let these issues beat me down completely :)

Yep, 5 and yes my hubby is very supportive and does way more than his fair share. I couldn't do any of this without him, he holds my hand when I'm in pain, washes my hair when I can't lift my arms, cooks meals when I can't manage, does all the washing and drying laundry, occupies the kids when I'm having to rest and much much more. He's my rock. I'm glad we've been of some help, it takes nothing out of your day to respond to someone who needs help or some kind words of support and encouragement xx

Aug 28, 2015 7:20 PM

God Bless you & your family. Gotta get in my whirl pool tub, I know that thing will do some good. (apple cider vinegar, baking soda & peroxide) weird I know but it works to relieve pain. Have a good evening. Please know I'm here if you ever need a shoulder, I know yours are probably worn out from me today.

Aug 28, 2015 9:02 PM

If it works for you, go for it :) we all have our little ways of relieving some of the pain, I hope it eases up soon for you. And thank you :) I'm always happy to lend an ear when I can because I know how hard it is, I'm heading to bed as I'm bone tired, hoping to get a little sleep now, night night ❤️ xx

Aug 29, 2015 12:51 AM

It is very tough because life as you know it changes which is hard for family. It is very hard for family to understand what you live with. My wife still doesn't understand how much pain I am in because it is invisible. Although it will be a challenge try to get them to research it and learn from that. Then maybe they will understand a little more. Don't be so hard on yourself. That makes it worse. I try not to show my pain anymore but mentally that is destroying me. Don't make that mistake I did. It causes the depression to get worse. I have found some relief in using Real Time Pain Relief. It really does help.

Aug 29, 2015 1:48 AM

Great advice, thank you. I needed to hear that cause that's the road I'm heading down. What's"real time pain relief?

Aug 29, 2015 2:12 AM

Boxerguy, I feel that I need to at least acknowledge some of what you've said there. Firstly, always remember that there are people to help, people to listen and people that can offer sound advice and support. Secondly, don't ever feel that you have to close yourself down, don't hide your pain, if you hurt, you say so, regardless of whether people understand or not. Yes I know it's very frustrating when they don't but at the end of the day you have a right to say how you feel, like any other person does. You're human, you have emotions, you feel pain, you feel desperation, you feel lonely and you feel angry. But you're not alone, we understand, we care and we are here. We can try and educate them but we cannot force them to understand it, it's up to them to take charge of what they research, and how far they are prepared to go to get a better grasp of your pain. But ultimately if they chose to ignorant, that shows the measure of the person in my eyes. Anyone who truly cares about you and loves you, will make that effort. They'll be eager to get a a grasp of what you have to live with daily, so they can at least be there for you, even if it's just to vent how you feel. But please, don't ever feel like you have to shut down and keep your pain quiet, it's your body, your mind, your right to speak, to cry, to yell and scream when it gets bad. And it's your loved ones responsibility to hold your hand, to hug and hold you and to tell you they love you. Sending you lots of gentle hugs, stay strong and above all else, be yourself xx

Aug 29, 2015 4:43 AM

Tinyboo and Bixerguy, I came across this on a chronic pain website and the title was this:

So your friends probably don't understand - but that's ok.

I thought I would copy and paste this for you both. This was the reply:

Chronic pain is something you need to feel in order to fully understand it. Even your most well-intentioned and supportive friends probably won't really get it, says Prokopy, and you can't necessarily expect them to. "I have friends who have never had a headache and I love them dearly, but they have no idea what my life is like," she says.

What does matter is that your friends don't judge you if you need to cancel plans on them, and that they try to understand what you're going through, says Prokopy. "It makes you watch your time and who you spend your time with," she says. "You make choices, set stronger boundaries. There are times I've had to say, 'People just aren't getting it, they don't understand me, they don't want to understand me, and I can't waste my time on them.' "

I hope that maybe helps you both a little bit ❤️ xx

Aug 29, 2015 9:48 PM

Real Time Pain Relief is a topical pain reliever that helps with a lot of my pain and s lot of people who use it for all sorts of pain. It is all natural. It has even replace Norco the narcotic with great results. Since I have started having seizures between 6 and 8 times a night I seem to be destroying myself quickly. I take four anti seizure medications with no break in sight. I average about 2:43 a night in sleep. Which is causing major flares. It HSS gotten out of control.

Aug 29, 2015 10:27 PM

I'm really sorry to hear that, I know all about seizures my son had them when he was younger. He did extremely better when I put him on a all natural diet. He was able to go off all medicine. You'll be in my prayers, thank you again for the info on the TPR

Aug 29, 2015 10:31 PM

I understand what y'all are saying. Chronic pain or any chronic health issue changes lives. For years I was there caregiver and problem solver. Now I make sure I don't put others first, as a habit, at the expense of my own physical and mental needs. I tried to drive to my dad's today, 1 1/2 hours away for the first time in two months, and after only thirty minutes I had to swap seats and let my hubby drive. My hands were cramping up and getting stiff, and my right hand tremors started up (happens any time I use it more than 15-20 minutes). We got to my dad's and, bless his heart, I had to book his computer back up, which has been sitting there for two weeks because with Alzheimer's he couldn't remember what to do. Then fix the cable connections on his TV system. My hubby draws a blank with technology hookups, Lol! Tonight my body hurts, but it's a small price to see my dad smile like a kid at Christmas! I will rest up tomorrow. He kept telling me, "don't overdo it, of you'll be hurting tonight." He understands because he's suffered chronic pain. Many family and friends just don't, and there's really not much we can do to help them. But we shouldn't feel guilty because we need that extra rest, of because we have to decline invitations. And finding this community is really what's helped me on those points! I wish you all as good a night as possible, and a good day tomorrow. 🙏🌼

Aug 29, 2015 10:38 PM

You are a remarkable woman. I've found more love & caring people in this community, for that I thank God. I felt so alone until now. Still finding my way and learning a lot. Get some rest.,maybe we'll both have a good day tomorrow. Night

Aug 31, 2015 1:03 PM

Tinyboo, I suffer from anxiety issues and have been out of those medications now for about 6 months or so and I have found that if you vitamin B12 ( has to say for central nervous system) 2 in the am and 3 at night it will do wonders for anxiety issues. Prayer's to you.

Sep 01, 2015 7:25 PM

I'm gonna give it a try, thank you

Sep 02, 2015 3:16 PM

Moparmom, what's the dosage on the B12? I've been like on it in blood tests. 🙏🌼

Sep 04, 2015 6:59 AM

Oh how stupid of me lol! They are 500 mlg. Over the counter.

Ready to start relieving your pain?

Join Community