Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

I don't understand how you guys do this

Dec 18, 2016 7:44 AM

I don't understand how you guys do this. As in this I'm referring to dealing with all this pain. I'm laying here with tears in my eyes trying so hard to not break down. I've just rapidly deteriorated it seems in the past three nonths. Usually it's my legs that are killing me to the point of I feel like sometimes I wish I could just cut them off and be do_

Dec 18, 2016 8:15 AM

I'm sorry you're in so much pain. Do you have a heating pad or hot water bottle? Take a warm bath with Epsom salt. There are essential oils that help some people and vitamins and minerals some people take like magnesium. Others may tell you more about this. Welcome to the community. People are from all over the world so they respond different times.

Dec 18, 2016 9:44 AM

Unfortunately one day at a time, hence the name happy to see the sunrise, and it's OK to break down sometimes, we all have. Those days when the pain just won't end and no amount of medicines seems to help are the worst. Is it just the fibro or do u have back issues too?

Dec 18, 2016 1:35 PM

Sorry , I totally feel asleep in the middle of writing and didn't even finish. I was so exhausted. I do have a heating pad and actually my husband just bought me a heating blanket bc the heating pad wouldn't cover all the painful area. Best investment ever!! Last night / eatlrly this morning was crazy. I felt like I had a bad rash on my sides like below my arm pits but nothing was there and my back felt like it was really sunburned and my shirt was rubbing against it but it's not. My back has done that occasionally but maybe 5 or 6 times over the past few years and it never lasted long so I never really thought much of it other than it was weird. My calves are killing me, my hip and shoulders feel like they are being dislocated. I was fine a year ago. Gradually a pain here or there then 7 or 8 months ago severe pains in about 2 spots but still maybe I'd hurt an hour or two one day during the week then 2 days the next week then no days etc. I thought maybe a vitamin deficiency or something. My doctor has done ever test she can think of drawn tons of labs, x-rays, mri, I saw a gi doctor bc I was having stomach pain. I got diagnosed with IBS, but she called a few days ago and said when I come back in January she's going to give me an official fibro diagnosis bc she's already ruled everything else out. She put me on gabapentin last visit and it helped tremendously like within 30 min I was so thrilled so thing was working but now 2 weeks later I'm hurting... what's going on? I also just can't get over the fact of how you go to being completely fine ( well looking back there are unexplained things here and there but definitely not frequent, I'd say it started creeping up 2-3 years ago) to your health deteriorating so fast. These last 3 months. I have been in so much pain every single day. I sometimes get a break during the day but I have not had a pain-free day at all. I don't feel like doing anything. I just want to lay in bed under my heating blanket. I'll take any other suggestions yall have for pain relief and what I'd going on with this feeling on my back? Anyone else ever have that? Thanks, I really appreciate being able to talk openly and honestly.

Dec 18, 2016 1:40 PM

As far as back issues my spine mri showed minor arthritis in lower back and a few disk that a starting to degenerate. She said looks like degenerative disk disease but it was nothing that would be causing all my symptoms I had a hip X-ray to bc my left hip keeps hurting so bad I've gotten a limp, not contact limp but as I walk through the day, it looked fine just showed what she said looked like previous tendinitis in my buttcheck. I do have an appt in Jan with a orthopedic just to look over my MRI results and stuff

Dec 18, 2016 2:57 PM

I would suggest to get a referral to a rheumatologist. They can dx fibro. They also prescribe meds in therapeutic amounts. If gabapentin helps you there's a way that you gradually increase the amount you take til you get the max amount. I take Lyrica. Gabapentin didn't help me. Be sure to go to a rheumatologist that treats fibro. Not all do. Good luck in finding something that helps.

Dec 18, 2016 3:47 PM

((((( gentle hugs ))))) I think, at least for me, I do it because I refuse to let it win. It being Fibro. I may have it but refuse to let it have me. Yes, I have those moments where I think I can't possibly go one more step/ do one more thing. I also have my pity parties. But in the end I pick myself up and keep going.

I have found I hurt more if I don't at least do some gentle stretching. When I am hurting - (and seriously - when am I not hurting) if I do some moving it helps. My physical therapist has given me some easy exercises to do that help.

Dec 18, 2016 11:20 PM

Thanks ! My pcm said she could give me a referral to a rheumatologist if I really wanted one but she didn't think it'd be helpful bc there's not many around here that actually treat fibromyalgia. Have any of you had this burning feeling? This is new to me. It's just getting worse. I feel like my skin is on fire. It hurts to even have a shirt on. I have this really flowy strapless sundress, bathing suit wrap type thing on for now. It just feels like everyday it's something new. I just really need to find relief somehow. I really appreciate the support

Dec 19, 2016 12:21 AM

It sucks ik..im laying here and my legs feel like there on fire.ik stretching alot helps me

Dec 19, 2016 12:38 AM

Not sure where you live but have you talked about getting a referral to a pain clinic? Between them and my physical therapist I am able to.keep my pain to a tolerable level.

I think it might be worth talking to a rheumatologist. Having your pain charted through this app as well.as your comments each day will help you when you do meet him. You can actually show where the pain manifests each time and you can document what you have tried and if it helped or not. In your notes you can also document if something different has happened to affect your pain.. Such as losing balance, changing meds. Added stressors etc. All will help you present a clear picture to whatever doctor you see.

When I see a new doctor I also have a typed up medical history to give. It lists all my diagnosis, all my doctors with addresses and phone numbers. It also lists my pharmacy and 2 contact in case of emergency people. Then I list my medications and what I take them for..a list of surgeries and when I had them.as well.as who the surgeon was.

I.also.keep a copy in my purse and in my car.

Sorry for rambling .. :)

Dec 19, 2016 12:47 AM

No worries..i see my dr for the first time wednesday i have my mri results im worried cause the new cdc pain med guidlines.i was taking 20mgh patch 400 mg of tramadol and 90 10 mg oxy.i lost 100 pounds on my own i stopped taking the butrans and oxy on my own and was just taking 400 mg of ultram i was using my gym for workout and the hydro massage and my dr left so my new 1 i seen for a pre op check for surgery last month i see him for the first time wed as my new primary dr.im nervouse ive done everything injections nerve burns chiropractor etc etc..im tired n idk if i have it in me again seem like any new dr wants you to repeat what youve tried waste more time more $$$..sorry for rambling i have absolutly no one to talk to bout this the only person i knew died couple yrs bak.any input?

Dec 19, 2016 2:26 AM

Hi I'm fibrosucks, I'm just logged into the other app atm.
I did mention going to a pain management doctor but my pcm said they pretty much just like to stick people with needles lol. We did both agree though that I could benefit from physical therapy so I'll get a referral for that after the holidays.

Dec 19, 2016 2:30 AM

I'm sorry sozki.! I'm new to all this, but I'm always here to listen. Thankfully I finally have a new doctor that is trying everything she can to find out what's wrong. All my other doctors have always brushed off my symptoms. I literally just got a fibro diagnosis. She said she can't think of anything else it could be after all the lab work she's done ( tons) , x-rays, and mris.and I saw a gi Dr and had a endoscopy and colonoscopy.
I just had a hysterectomy in Feb of this year also.

Dec 19, 2016 2:35 AM

Im glad you know sorry you have fibro luv.ik whats wrong i fell off a plane at work im at a point where im done with narcotics so desperate for alternatives

Dec 19, 2016 2:36 AM

Oh I'm so sorry to hear that. My husband actually worked in aviation and got hurt bc he fell off a helicopter!

Dec 19, 2016 8:23 AM

Sozki... I try to.keep a list of what I have tried and why it was discontinued. In too of having Fibro I also am a stroke survivor. Both affect my memory so keeping a record on my medical stuff helps keep me focused when a new doc. asks questions. :)

If this doctor wants to repeat something you know didn't work before don't be afraid to say no and explain why.

Dec 19, 2016 11:45 AM

fffibropainucks, I completely understand what you're going through. Let me share my story. In 2007 I started having muscular pain with knots (tender points). At first it was vague and random but eventually spread body-wide and more severe, 24-7-365. I took a leave of absence in 2010 for unrelated surgery, although the inflammation markers were extremely high. My doc finally officially dx fibro in 2012, and after trying several meds he put me on cymbalta. The first 6 months I felt better, but then I started telling him and other doctors my pain was increasing and I felt something else was wrong. After nearly having a nervous breakdown, due to the side effects of cymbalta I was taken off of it and put on Deplin (B9-folate) for an identified genetic defect that keeps me from absorbing and breaking down B vitamins (MTHFR gene defect). That gene defect affects muscles and brain, hence depression & anxiety.

I continued to have worsening pain, and I continued to complain. F for years, actually decades, I've had a major problem with yeast infections; primarily oral (thrush) since 2005. I developed an oral rash that would not go away in 2014 and in 2015 my rheumy doc ordered an oral biopsy. It came back positive for Sjogrens Syndrome. One symptom of sjogrens is thrush. I was put on plaquenil and my pain level dropped from a daily 8-9 to a bearable 3-4. I also developed hypothyroidism and autoimmune (AI) skin rashes. Sjogrens is now affecting my joints, and can affect internal organs. I have many other issues since 2010, and I'm now disabled, using canes, walker or electric cars to get around. I have good days, not so good days and sometimes really bad days, but thankfully the good outnumber those really bad days. It took 4+ years to find all these diagnosed problems and I've developed POTS since October. I take every day one at a time; one decision or activity at a time. I rest between activities. I now take magnesium and vitamin D (+ B9) for identified deficiencies, all which affect muscles. When I have bad days I don't beat myself up for not being able to function, I just rest. Cold weather or really hot weather worsens my symptoms. I get flares without warnings, sometimes fibro-muscles, sometimes sjogrens-joints, and sometimes both.

Take care of yourself during flares, which is likely what's going on now. Neuropathy pain is what it sounds like you're describing that comes and goes. I do the same except it's now constant; pins, needles, tingling, stinging, and/or itching in the fingers, legs, feet and/or face. Warm showers, Epsom salt soaks, relaxation and deep breathing, mild exercise (when you can), gentle stretches, vitamin supplements, reduce sugar and carbs intake (causes worse inflammation) are all suggestions from others that I started doing myself, since 2012-2013, and it does help. Trying to stay positive is also helpful, but there are times depression or anxiety or just having a bad day makes that impossible. That's when I rely on my faith the most; that it won't always be bad days and somewhere deep within I find strength to get through. And having this wonderfully supporting community is the"cherry on top" that helps me get through. I hope you will continue to chart every symptom and keep talking to your doctor. Get a second or third opinion if necessary. If you feel your doctor isn't helpful them find someone else. Research anything you think might be helpful and point it out to your doctor's. My PCP said my thyroid was normal and I didn't need meds even though I had all the classical hypothyroidism symptoms and a CT scan showed thyroid abnormalities. My psych doc referred me to an endocrinologist who put me on T3 & T4 meds, and my symptoms have lessened. Follow your gut instinct because you know your body better than anyone. Sending hugs love and prayers that you'll get answers and solutions to start feeling more better days! 🙂💕🙏🌸

Dec 19, 2016 1:52 PM

Wow Flappsy, you need to rest your fingers after this post!!!😉💕😊

Dec 19, 2016 2:41 PM

So sorry for you 😔😔 and honestly I just vent to my family and friends... constantly.... yeah it's not the best way to cope

Dec 19, 2016 2:53 PM

@ AlwayZ, lol, yeah I actually did!

@ HeyItIsMe, venting is actually a good coping mechanism. Vent anytime you feel you need to. Hugs!!

Ready to start relieving your pain?

Join Community