Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Fibro, ddd, deg. Arthur, spina bifida occulta, cyatic joint distinction, scheuerrmans disease, ACL

Jan 17, 2016 11:55 PM

I have all of these issues as well as depression, ptsd, and severe anxiety and agoraphobia. I just had my ACL replaced. Stage 3 kidney disease !! No one wants to listen because I have to many issues and in pain everywhere. I'm just a problem and to much to handle. I can't work and they refuse me disability. What a disaster !!

Jan 18, 2016 1:22 AM

Sounds overwhelming. We're here to listen. Bad days happen, but venting can take some of the weight off your chest. You are not a problem, you are a human in pain. I'm not old enough (only 15) to work yet, so I don't know anything about that, but it sucks that you can't get disability. I think it's sadly common for chronic pain patients to be denied disability.

I'm not familiar with all your diagnoses, sorry. I have anxiety, complex regional pain syndrome, neuropathy, MTHFR gene mutations, hypothyroidism, back pain, migraines, teeth that come in slowly and side ways, and other undiagnosed things.

Jan 18, 2016 1:42 AM

Tomuch2handle, I am sorry that you feel this way. It must be overwhelming to you just as ferritbandit just said. You say you are talking to people. Have you examined how you are talking to people. Like do you try to talk about it all the time. I am wondering if you have a close friend who can listen to you. Whatever the case. This is a perfect place for you to vent about what is going on and how you feel. You can talk about your pain or when you go to the doctors. Anything you want to bring up, we will listen. I am sorry that you are so young and dealing with so many issues. One thing is for sure, you don't want to stop telling your mom and dad how you are feeling. They need to have real empathy and be able to imagine what you are going through or they will think that your situation is not as bad as it is. The people who love us should know. One thing that might be making you feel like nobody cares is that nobody understands and they don't know what to say. People want the ability to fix things especially for someone who is young. If they can't, they feel helpless. It is not a good excuse. It just is sometimes a human tendency. I hope that things will change for you and your surroundings. Pick the best times to talk to someone about these matters and make sure you don't talk only about that every time you see them. But remember, this is a place you can tell us all the time how you feel and we will listen. We all need someone just to listen. Take care and best wishes. I hope I didn't offend you.

Jan 18, 2016 3:26 AM

Dear too much to handle,
I have struggled with Dr's over the years, they can only do one thing at a time. I recommend making another appointment to discuss your anxiety. Ask around about which Doc has the better bedside manner. Maybe if you ask the receptionist, that you have anxiety/depression does she know who best to discuss with. Don't be afraid if you break down and cry. They might give you more med, but also maybe counselling. Some charities also offer a person on a free phone number to talk to. Thinking of you.🐼πŸ₯πŸ‡

Jan 18, 2016 4:06 PM

To, I think we may share some common issues. I also have spins bifida occulta(newly diagnosed January 2015) at age 35, SI joint dysfunction, PTSD, anxiety/depression and arthritis. No, I'm not wheelchair bound from the SB but I truly do understand where you are coming from. And yes, the spins bifida truly does make my lower back pain worse at times. Let me know if you want to talk further.

Jan 18, 2016 4:46 PM

Too much to handle; although I am not posting in the site/forums as often as I want & should. The family you have vented to today is absolutely wonderful and a pure blessing!

Jan 19, 2016 9:04 PM

Tomuch2handle, welcome to our community. I'm very sorry you are overwhelmed with all these dx. But you have joined a caring, supportive group of people, who will not only listen but also give suggestions to help you adjust our try and alleviate pain, or stress, or anxiety, etc. Feel free to rant, cry, pray, laugh, and no one will judge you. We are all here to support each other, because even though we may not have the same dx issues, we all understand chronic pain & being judged.

I have fibro, DDD, sjogrens, hypothyroidism, TMJD/DJD, migraines & cervicogenic headaches, tremors, vertigo, sciatica, and sounds bifida occulta, as well as depression and anxiety, and many other dx. I completely understand feeling overwhelmed by too many diagnoses (dx). I understand feeling frustrated because doctors don't seem to listen or care because "I'm too complicated a patient." I quit work in 2010 to have what should have been a simple tumor excision, but turned into 5 in 1 procedures with multiple complications. Then afterwards multiple dx have jumped on board and my health has declined like a runaway train. I can't tell you how often I feel like my doctors pass me from one to another to avoid dealing with having to help me. Several have said, "you need surgery but I won't do it." Really?!!! I cannot work and I'm waiting for a disability hearing.

And I'm not alone in this. Many here are going through the same exact thing you and I are. You are not alone. We are not alone. It's hard to get to the point of accepting that this is our new normal life. It takes grieving over losing our old healthy selves. And then we must decide what we can do and listen to our bodies, taking cues of what and when to do or rest. It takes time through trial and error to know what is off limits and what and how we need to adjust our methods to accomplish our goals.

When it comes to family and friends understanding, it's very hard for them unless they suffer from chronic pain too. Even though my hubby sees me in pain daily, he still at times doesn't understand. For instance, getting a shower, dressing and drying my hair wiped me out yesterday. He thought I was having asthma or heart issues because I was so short of breath. When I told him that was my fault reaction to activity he was like, "oh, I didn't know." I've learned who I can and can't talk to about my pain and struggles. But the best thing I did for myself (besides joining this group) was to start counseling with a psychologist. They are not prejudiced or closed minded or judgemental. Because you are suffering from depression & anxiety, I'd suggest counseling, if you aren't already doing this.

Please know that you are never alone. You are not a problem or too much to handle. If anything, the doctors are too weak and afraid of a challenge to be your doctor, so find new doctors who will listen and help. And we are all here for you. Sending you hugs, love, & prayers that you will find the support you need to learn to cope, survive and begin to enjoy life in the new you. You are worthy of love, and we are here to prove it! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 20, 2016 11:05 PM

Everyone here is so wonderful! I can't say how it is to me to finally have people who understand what I go through!!
Flappys thank u so much for what you said. It is hard to tell anyone what it feels like to be put off due to having to many issues that the docs done want to even look at you.
Amanda, you are truly someone that can say they know how it feels. I am not wheel chair bound either. Along with my SB I have spinal stenosis. I have went through months and months of spinal injections. They never worked. I have went through numerous shoulder injections for the deg. Arthritis. They stopped working. I had a nuclear bone scan full body, it was a shocker. We found I am littered with deg. Arthritis. It is everywhere. I am a stylist that is all I know. I haven't been able to work since 2010. I just found out about my kidneys a year or so ago. I was told I could go for disability however they denied me for years!! I'm already 39 they say I have a better chance when I'm older. Ha ha ha. If I make it. I have 4 kids to support and we have to scrounge and find inventive ways to do or get what we need.
I don't want to seem like I'm bitching. I know many have things much worse and I am thankful for what I have. I just don't want to be alone in this anymore.

Jan 21, 2016 11:46 AM

Tomuch2handle, you mentioned having injx for your shoulder. We're they cortisone or the viscous liquid for cushioning? I just found out my hip joint and knee are degenerating with OA. The doc mentioned trying viscous fluid injx for the knew and PT on the hip. Just wondering how gold it works. Thanks! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 22, 2016 8:46 AM

Flappys,
I had the steroid injections on my shoulders. They worked great for the first 3. I went back later again and they never worked after that. The ones in my spine never worked.

Jan 22, 2016 8:49 AM

Same for me.. I've had cortisone shots in my shoulders, knees, wrists, thumbs, spine, etc.. They worked in the beginning but after a couple, they totally stopped.

Jan 22, 2016 4:56 PM

I understand, suffer from anxiety, I have grade 3 spondylolithesis (between 50 and 75% slippage of my l5 vertebrae! And because I've grown with it I stand very arched back so standing around for even 30mins leaves me in agony). What annoys me most is that I wake up with stiff unmovable fingers, I can't stand up too quick because my knees and ankles need to adjust or they unbearably hurt, and a range of other things like not being able to climb stairs because of knees and ankles yet I've been to the hospital and all has been dismissed which is great because I don't want to have to live with anything and my mums happy I don't have a serious condition but that doesn't change the fact that even the simple things in life I can't do! Like lift the bloody kettle in the morning because my hands can't grip it!

Sorry for the rant I jut need someone to understand, lol x

Jan 22, 2016 4:57 PM

Oh and I'm only 16 so I shouldn't be popping co-codamol and naproxen and being in constant pain somewhere in my body!

Jan 22, 2016 6:21 PM

I understand the stiffness Ouuchh. But I'm 54 and I've only had stiffness 12-15 years. You are very young to be battling this. Have you been tested for juvenile rheumatoid arthritis? Mine comes from age, OA, fibro, & sjogrens. Hugs to you! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 22, 2016 8:40 PM

Oouchh,
Hi, I get the pain and u can vent all u need ! I have no one and I raise my 4 kids alone with no help. I am so sick of this feeling of hurting all the time. I have hurt all my life from having one thing or another wrong. And right now I can't walk, I can't even stand long. My knee from the ACL surgery is screwed. Today was my first PT day and he says he is worried about me getting my range of motion back. I think there is something wrong inside. It is still slipping. I don't know. And I think this surgery has flared my Fibro. I hurt everywhere and my muscles are SO cramped up. I have a very high pain tolerance and I still want to cry it hurts so bad. How do I work? I'm a stylist and I have to stand. I can't get help. And all these other issues and can't get disability. Ugh!! Does anyone have any suggestions??

Jan 22, 2016 8:41 PM

I'm so thankful I found all of you! This app on my phone was a hope to prove my daily pain by tracking it. And with it came amazing people !

Jan 23, 2016 1:48 AM

The doctors are useless though! I got really bad back pain from my spondylolithesis and when I went to the consultant he dismissed anything but sent me for an X-ray and MRI incase and it showed up in the X-ray and he was actually shocked and admitted to having seen nothing like it! I also have Hypermobility so he's never seen anything so slipped standing up and so normal when led down! I just had a blood test for my joints to be totally sure there was nothing and as the doctor said there was nothing so they just stop there but it doesn't stop the fact that I'm still in pain all bloody time! I met a lady and she had elhers danlos syndrome type 3 and she was saying so many things about what she suffer and it was actually someone I could relate to about pain and weird things I can do at joints but that kind of thig doesn't show up on a blood test, and I know self diagnosis is bad but it's not common and few doctors even know about it. So Im left in a position where I know something is up and not right and it's all ignored and to everyone else it's fine or "it's just growing pains" why growing pains now I've never had growing pains before, I'm 16 for goodness sake I'm not going to grow much anymore!

Jan 23, 2016 1:52 AM

It's so lovely to have people I can rant to and they understand the pain! Thankyou so muchπŸ˜˜πŸ’‹πŸ˜Š

Jan 23, 2016 8:26 AM

Ouuchh, you're a very brave young lady. I understand your pain very well. My spine is very badly compromised but I am 50 years old. I was reading your posts and was going to ask if you've been tested for EDS. That's what it sounds like based on what I've learned from fellow community members who do have it. In sorry that you suffer with such pain at such a young age. There seem to be more and more teens here that are in pain and my heart breaks for all of you. This is the time you should be having fun, laughing and getting into trouble!! LOL!!😜. Always remember that you need not apologize if you need to have a rant, that's what we're here for. I wish you all the best and hope that you get the answers you need to help you feel better. Sending gentle {{{Hugs}}} and prayers that you settle in and find the comfort, support and information that you need.πŸ’•πŸ™πŸ»πŸŒ»

Jan 23, 2016 1:44 PM

You need a lawyer for the disability. It takes time, but with all the issues you mentioned I can't imagine you not getting g it eventually ÷

Jan 23, 2016 3:54 PM

To much, the only real issue that the SB has thrown at me is very mild muscle weakness in the legs and "blunted" neuro signs in my feet and ankles. Other then that, no it doesn't bother me.

Jan 23, 2016 4:01 PM

Alwayzinpain&tomuch2handle&FlappysLady81 Just reading your replies make me smile and feel understood! It's nice to be able to say things that if I told my mum or physiotherapist they wouldn't understand and it's sad like if I told my mum she would probably ignore it, like my back for a long time! I noticed a lump on my spine and it's not exactly small and she was like oh yeh it's normal then a year later when I was still complains of back pain and she tried to find the lump on my brother and couldn't so she got my a hospital appointment! So I'll have to have been feeling te same pain for a long time for it to be looked into! That large lump I felt was the vertebrae underneath the one that had slipped! And it's scary, I'm soo so so scared for the future because I'm waking up with a new pain each week with new triggers and they're slowly getting more persistent, what about when I want to have children? How am I going to be able to carry that extra weight around with me if I can't carry my own weight? I could tell mum how scared I am but she wouldn't really understand!πŸ˜”

Jan 24, 2016 3:53 PM

Ouuchh, I know it sounds easier than doing it, but try not to focus on what the future may or may not hold for you. It will only cause you more stress. A chronic pain life is not easy, but try to focus on one day at a time, or even plan out a week. But try not to worry about a future that is months or years down the road. I can tell you that when I stopped working in 2010 to have surgery, I expected to return to work. Then chronic issues started jumping on board and from one year/month/week/day to the next my health has yo-yo'd up and down. I couldn't possibly imagine what next week is going to hold for me, let alone next year. I just find it much less stressful if I focus on the here & now. I hope what I've said isn't confusing. I'm struggling with a severe headache right now, so I'm not sure if it makes sense. Hugs & prayers! πŸ™‚πŸ™πŸŒΌπŸ’•

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