Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Newbie here!

Mar 15, 2016 6:15 PM

Hello, everyone. I installed this app on my phone recently--and I'm hoping it can help me keep better track of my symptoms. I am a 34yo female, and I have been suffering from chronic fatigue and muscle spasms for many years. My general practitioner never took my symptoms seriously (spinal xrays and MRIs only show mild osteoarthritis), but my husband and I grew increasingly worried as things began to worsen and progress. So here are my issues:
- I now have a lot of left-sided nerve pain (have had trigeminal nerve and sciatic nerve flareups).
-I have coccygeal pain and pelvic floor and rectal spasms which are horrifying and embarrassing.
- I have episodes of skin sensitivity in a range of locations; it basically feels like a deep sunburn-but I have no rash or inflammation.
-Let me not forget that I have grown even more clumsy. I trip over myself a lot and sometimes have wobbly/shaky episodes.

I decided it was time for a neurologist. I finally had my first appointment last week-and the doctor has an MRI brain scan set up for me for Thursday. I'm nervous but kind of hoping for answers sooner than later.

Does anyone else here have similar issues as me? How do you all deal with the daily torture? What should I request in terms of further testing?

Mar 15, 2016 6:18 PM

I forgot to mention that my symptoms tend to cycle on and off depending on stress, hormones, activity, and weather

Mar 15, 2016 7:04 PM

Flown, welcome to the family! We have some of the most caring, funny, understanding people here.

I will hope for the best for you with your testing. I have Ehlers-Danlos Syndrome, TMJ disorder, heart disease, stage 3 kidney failure, bone on bone osteoarthritis, hiatal hernia, asthma, and more.

I try to take one day at a time. Some times I even have to take one minute at a time. I try to see the funny in every day. For example if my shoulder goes out while I'm sleeping, I'll tell people that my shoulder went out without me or my permission. And wasn't that rude of it! I mean, it could have at least asked if I wanted to go out with it. LOL

Mar 15, 2016 7:21 PM

Hi Flown, I can definitely commiserate with you about the nerve pain & feeling of skin on fire. I am wobbly, too. Last time I fell I split my lip, one whole side of my face turned black, hurt my bad side knee & hip. Had to hide out for a couple weeks. I have severe nerve pain with sciatica, scoliosis & DDD. It is good you have a doc that is looking out for you now, maybe you will get some answers.
Glad you found this app.

Mar 15, 2016 7:29 PM

Hi flown, I'm 35, I started off with congenital progressive spinal conditions which by the age of 20 were pretty bad, had a spinal cord injury at 32, I'm now quadriplegic. Just make sure any question you think of, write them down, I used my iPhone recorder to record my appoints with my spinal consultants so I could go back over them, because I could never keep track.

Mar 15, 2016 7:30 PM

Ask their permission though if you do the recording

Mar 15, 2016 7:30 PM

You guys are so sweet! So nice to meet you both!

I'm just so tired of not being able to live like a "normal" person. I love the outdoors, and I cannot even do a VERY LIGHT one mile hike without having an excruciating flareup (usually 2-3 days). I sometimes have a hard time even walking to the kitchen due to leg stiffness/weird sensations that causes me to limp slightly. Car rides flare up my coccygeal issues. I used to love lifting weights, but weakness and pain can discourage me from even thinking about being that active. I go to physical therapy twice a week, force myself to walk or work out twice a week, and I am also in cognitive behavioral therapy to help me cope. I am not taking any medications, and over-the-counter meds don't do much of anything to help me.

I have a prerequisite class this Summer, and I am terrified of what I am going to go through to accomplish my goals. The class is 4 hours long, 4 days a week--and the drive is a total of an hour. I am also starting graduate school in Fall, and I really want to be able to focus fully on my studies. *crossing my fingers that my tests can reveal something so I can get some sort of treatment!*

Mar 15, 2016 7:55 PM

Flown, I first want to welcome you to our community family. I'm sure you will find there are many folks here that are ready and willing to help. We are very close knit, support one another through bad times and celebrate with each other for our victories (no matter how big or small). There are no judgements here. We are all here for different diagnosis and issues but we ALL understand chronic, irretractable pain.
Now, other than the MRI and the X-rays you've had showing that you have osteoarthritis have you been diagnosed with anything else?
One thing I would say about your appointment would be to take a list of questions that you may have for the doctor. Be forthcoming with everything and anything that you are asked. (The doctor cannot properly help you if he/she doesn't have the whole story). I wouldn't specifically ASK for any tests but I would ask if I could record your consultation so you can review it later in case you missed anything. As far as tests, the doctor will order them based on the symptoms that you discuss with him/her. If they are tests that you've had, you may be due for a new MRI. If you have the last one, bring it with you for comparison. Don't necessarily expect to get the answer to all of your questions too quickly. It takes time and a lot of patience to have to wait for testing and then results and then figuring out what direction your treatment will go in.
Try not to be worried about the appointment, take lots of deep breaths and perhaps meditate before you go and ask your questions and know that you have an entire family of pain warriors behind you. I wish you all the very best of luck. Sending you some gentle, supportive {{{Hugs}}} and prayers that the doctor is able to help you feel less pain.💕🙏🏻🌻😊

Mar 15, 2016 8:13 PM

@Alwayzinpain:
I saw the doctor for my first appointment last week. I was extremely nervous about it, and I DID forget a few important details as a result (I guess I need to make him aware of them at my follow-up). He seemed very nice, and he said that he thought my symptoms could indicate anything from MS to fibromyalgia to lupus to a lot of other things :) . He ordered an MRI brain scan (this Thursday), and he said that we will go from there.

I have had a lumbar MRI and x-ray, bone density scan (I have broken/cracked multiple things in the past years without traumatic events), coccygeal x-ray, and pelvic ultrasound within the past year or 2. According to the radiologists, everything was within "normal limits." My lumbar MRI showed mild osteoarthritis. My coccygeal x-ray showed some abnormality but was within normal limits. My bone density scan was at the low end of normal for my age. My pelvic ultrasound came up clear, but I have had complex cysts in the past.

I have been trudging through the pain for many years now. I've never been the type to push for pain medications, and any time I have been in serious pain, my GP has treated me like an addict. This makes me afraid to even ask for pain medicine...despite the fact that it is driving me up the wall on a nearly daily basis. For example, I was treated terribly when I fractured my foot back in 2014. My GP didn't even believe that something was wrong with me, and I ended up forcing an MRI order to prove myself. I still wasn't given any pain relief despite the results.

My current situation is very similar. I've been presenting with symptoms for years, and my GP has brushed it off like it something I am making up. I even had to force them to refer me to a physical therapist because I wanted SOME sort of relief from the pain...and some answers. I have been in therapy since December now, and my PT has pushed me very hard to see a specialist. Thank goodness for awesome physical therapists!

I know I may not get the fast answers, but I can always hope for it right?! :D

*hugs you back* Thank you so much for taking the time to listen and give advice. I already feel some relief here!

Mar 15, 2016 8:52 PM

Welcome Flown! So many diseases have similar symptoms, so it generally comes down to ruling things out. Speaking from personal experience, two things come to mind, regarding the pelvic floor symptoms you mentioned, both which need a physician to look into: (1) Pelvic Congestion Syndrome & Pelvic Floor Dysfunction, (2) Cauda Equina.

I have both under #1, and it causes most of the symptoms (especially painful spasms) you described and then some. I was checked for the cauda equina, which causes bladder & bowel issues and is an emergency situation. It may not apply, but you could have a spine issue due to the sciatica.

Hopefully others will have suggestions you can look into. You should definitely are a neurologist & orthopedist about the sciatica, and aGI specialist or Urogynecologist specialist for the pelvic floor issues. I'll post a link on the PCS below. Hugs & prayers you'll find a good doctor who will help you find answers & treatments! 🙂💕🙏🌼

Mar 15, 2016 9:56 PM

Welcome! I deal with some of the same things you do. Since October, my GP and I have worked to rule out numerous things. In January when my symptoms became very concerning (severe headaches that increased with exercise, sex, etc and falling/losing my balance) I was sent for an emergent CT and an urgent MRI. They were both unremarkable (normal). I recently had nerve conduction testing as well. I have pelvic floor dysfunction (dx 2013), irritable bowel syndrome (dx 2009) and my newest ones: chronic migraines (dx late Feb) and small fiber neuropathy (dx 11 days ago). Be prepared that some of the tests may show nothing or very little. Ruling things out is just as important than ruling things in. Each test gets you that much closer. It can often be a long, frustrating process. Even though I have been dx with two new things, we still have to work to determine the underlying causes. I hope your doctors are compassionate and helpful!

Mar 15, 2016 10:13 PM

Flown, you have sure been through an enormous amount of pain and issues. I think before you forget any of the details you left out on your last visit, please write them down and this way you can't forget. I can tell you that as far as Lupus, that can be diagnosed with a blood test for the most part. The MS of course requires an MRI of the brain (that you're getting) to see if there are lesions on the brain. I pray that you get a negative result for Lupus and MS. Oh, just a thought, which I'm sure you've thought of, or the Doctor may have mentioned, have them also test you for Lyme's Disease. May all go well for you and please keep us posted as to how you are doing. All the best!! {{Hugs}}💕🙏🏻

Mar 15, 2016 11:02 PM

Hi Flown, I'm new here as well, and at the beginning stages of trying to figure out what's wrong with me. I don't have much to add. I just thought I'd say hi.

The one thing I'd like to say is, please try to figure out a way to deal with your pain. If your GP won't help, ask one of the specialists. While I know not all the pain can be taken away sometimes, there is no need for you to be in more pain than is unavoidable.

Mar 16, 2016 1:22 AM

I happened to be watching NCIS 300TH episode tonight. The marine that had PTSD said something that could help others.:
'I was fighting myself trying to get back to who i was, I need to live as who i am now'

Mar 16, 2016 4:08 AM

I tell folks the same thing all the time. We have to accept that our lives are not what they were and that we have to get used to living our "New Normal"

Mar 16, 2016 1:05 PM

You guys are so encouraging <3 I am definitely still struggling with myself to be "perfect" and "normal."

I feel like I am dragging my wonderful hubby down with me at times. He already works very hard--and he doesn't really get much of a break when he gets home (chores can be painful for me). He treats me like a queen, and I am SO VERY happy he is in my life. I really just want to repay him for all he has done!

My mother is very understanding but is fighting her own battle with chronic pain (she is undiagnosed with similar symptoms). We talk over the phone a couple of times a week--usually a lot of venting and joking about feeling like crap :D She's a very sweet person--and has already gone through so much with her pain treatment (doctors got her hooked on multiple sedatives and she overdosed 4 times last year). I have learned a lot from her, and I'm just glad she made it through her rough patch last year. I really thought I had lost her.

My older sister is the go-getter that posts "inspirational" facebook memes that actually drag me down. She brags about being a mother of 5, a school-teacher, Beachbody coach, and marathoner--and says that no one has an excuse to NOT be that active. I love her with all of my heart, but she does not understand invisible illnesses or chronic pain.

I also have a PTSD diagnosis, so I really understand that quote! Fighting one's self can just make it all so much worse! I'm sure I'm not helping my symptoms by being upset with myself over it! Why does so much shame have to come with the pain?

Sorry if I'm rambling on. It just feels good to put things into perspective on paper/forum sometimes :D

Mar 16, 2016 1:13 PM

You're not rambling, you're getting what you need to off your chest. It is a wonderful thing that you have such a supportive hubby and an understanding Mom. I am sorry to hear of her overdoses. It's so hard when one is in pain and just is so desperate for it to go away and take too much medication. I wish you and your family all the very best. Please don't let your Sister make you feel any less of the wonderful and caring person that you are. Whatever reason she posts that stuff is to make HERSELF feel better, not for you to feel worse. Don't waste your energy on it. Sending you gentle {{{{Hugs}}}} and prayers that you find yourself in a better frame of mind and pain levels. 💕🙏🏻🌻😊

Mar 16, 2016 4:56 PM

Having a safe place to vent is wonderful isn't it! I tried so many places before I found this one. I'm so glad you are feeling safe enough to vent!

Mar 16, 2016 10:44 PM

We need to be here for each other. Stay in close contact with those that support you. Try to do one more thing for yourself. Some days is a small thing like watching a soap on tv. Some days i manage to color a page in the book i bought.

Mar 16, 2016 11:19 PM

When you go for any testing make sure you walk out with disc of images, sometimes doctor only get the written report and never look at images, the some things they say don't cause pain but reality do, but do your own research. My issues were unbearable and I was told all the no n sence of depression and physical therapy. The physical therapy was the wrong thing for what was wrong for me. Most of my imaging centers will give me 2 copies and let me pick up a written report 2 days late. This saved my life.

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