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Posted 3/26/2015 1:41 PM (GMT 0)
I am struggling, I have written and deleted so many posts because I am depressed and feeling like I cannot express what is happening to me. I have deg disk, fibro, thyroid disease, arthritis, nerve damage, 3 back surgeries and now have pinched nerves and a C-5 disk bulge. I am overwhelmed have missed work, should be in physio more and in bed more resting it but I need to work to survive due to mounting medical bills and I am saddened by the pain and my inability to express my feelings during this flare that has now lasted 3 weeks now and no end in sight. I feel trapped by my own body locked into a ride I cannot escape. I know I am trying my hardest but when I get home from work all I want to do is sleep, lay in bed due to the dull ache at the base of my skull, the facial pain, neck burning and burning down my arms, the pressure that I fear will pop my head clear off. How can I deal with such immense pain on top of the other aches and severe shooting and other pain? How can I express to friends and family that this is for real, I may not look sick I may know how to hide it but I AM SUFFERING, I AM IN SEVERE PAIN and I cannot even cry about it, I've tried im too beaten down by this to cry.

Please if you can I need advice
Posted 3/26/2015 1:53 PM (GMT 0)
I only have a moment, I will think on this more. I am so sorry that you are having such a difficult time. I am praying for you Bunny.
Posted 3/26/2015 2:14 PM (GMT 0)
BunnyGirl, I'm so sorry. I know how you feel. I have severe OA with nerve damage, and I get the feeling of being trapped on a ride you can't get off of. I feel like I'm losing my mind most days. Even the smallest little bit of stress will send me over the edge. I spend so much energy hiding my pain (probably just think I'm hiding it), and keeping my "game face" on for my full-time job that by the time I get home, my body & mind are both screaming at me.

I can't cry much anymore either. I think it's the meds I'm on. I went on Cymbalta for a VERY short time, and it made me so numb, and took away my emotions completely. Even though I quit taking it around Thanksgiving last year, I still can't really cry. I can tear up now, so that's progress, but I need a good cleansing cry!

I'm here to listen if you need to vent anytime.
Posted 3/26/2015 2:46 PM (GMT 0)
Stacey, I am and have been on Cymbalta for years, it helps me not be so angry and to calm me to a point I can cope a bit but THEN A FLARE HITS and this one is a DOOZIE! I am the same way about work, I work full time and cannot cope the past 4weeks today that this flare started I think. I am irritable, grumpy, sad, making stupid mistakes due to the foggy pain brain and NO ONE UNDERSTANDS THAT! By the time I get home I try to do my exercises like walk 30 min or do stretches and then fall into bed. I am struggling so much and feel like no one cares :(
Posted 3/26/2015 3:40 PM (GMT 0)
Oh, I wish I could give you a gentle hug. We do get it here on this forum. I'm still new here, but I've found everyone very supportive, and have been able to better sort through my symptoms by comparing them to others'. It really helps you take better control of your health to have a support system like this.

I get so mad! At my body, my MIND, and myself. Ugh! I would cry if I could. I don't even have the energy to run the bath that would probably help ease my aches and pains. It is so depressing, I know. I recently gave notice to my employer. I am quitting April 15th. I'll get him through tax season, and then I'm out. High stress job + several autoimmune disorders/diseases + fibro = too much for this almost 48 year old. I have always been active, and I sit on the back patio looking at my back gate. It leads to the walking path, but do I go out it? Nope. Want to, but just can't muster the strength at the end of a work day. I'm hoping that will change when I can pace myself. When I lay down for 30 minutes here and there throughout the day, I am able to get more accomplished, and my mind is also clearer. That is a BIG deal to me. My mind is the thing that is causing me so much sadness, and anger. I'm grieving for the mind I used to have, and the life I used to have. It is so hard. It's like losing part of me.

I can only hope that through my faith, and my decision to make my health my full time job, that I can get some of it back. I'll keep you in my thoughts and prayers Bunny. I get it.
Posted 3/26/2015 4:22 PM (GMT 0)
Bunny, I had horrific back pain several years ago and raw nerve pain that ran down both groins and into my calves and had enormous difficulty walking...and needing two canes to do that. It was discovered I had ankylosing spondylitis and also sacroiliitis, along with my fibro. I was given ibuprofen with food and a muscle relaxer called Robaxin. The Robaxin made a significant difference in my pain...even my overall pain. I only take half of what was prescribed so I don't have side effects from it. This medication has been around for decades. I am walking fine again...no canes and no raw nerve pain either. You might ask about that.

There also is trigger point therapy you can do on yourself. What made me think of this for you is that you said you had a dull ache at the base of your skull. Feel your skull at the base and you just might find knots on each side of the bottom of your skull. If you do, try pressing on them. I bet they will be very tender. These are trigger points and I had them, too. You can press on each one as hard as you can stand it and then massage and repeat the process. Then give it a rest for several hours and repeat again. You should notice shortly that the knots are getting smaller and pretty soon they will be gone and that dull ache should be gone, too. Plus, you should be able to turn your head better.

There are trigger points for your arms, too. I fixed my frozen shoulder using this technique.

I bought a book called The Trigger Point Therapy Workbook on Amazon and it shows where to find the trigger points for the pain you are feeling. A lot is referred pain. For my shoulder, the trigger points were in my chest wall, top and behind my shoulder, and along my neck! I wouldn't have thought to look all those places to help my shoulder and arm. So this is a good investment and last time I checked it was under $20. It's saved me a lot of pain in the past few years.

Pain is exhausting. You hurt then you tense up....not even realizing it (I think that's where the muscle relaxer helps), and when you are doing this all day and half the night, you have expended a lot of energy. You're pooped!

By the way, I tried narcotics for my fibro and they didn't touch the pain at all. Also, the narcotics themselves can cause more pain if you've been on them a while, which it sounds like you have. So I think this is good what the pain doctors are doing. It definitely is worth a try.

Have you tried vitamin D3 and magnesium malate? These two supplements do help with fibro. There are links about these and how they work in the body in Fibro 101.

I will be praying that you do start to feel better and have less pain. I do care about you and really want you to feel better. I think it's possible because it's happened to me! Do try the trigger point therapy and ask about the muscle relaxer. These could help knock down some of the pain you are dealing with.

Sherrine
Posted 3/26/2015 6:34 PM (GMT 0)
I'm sorry, Bunny! ((((Hugs))))

We're here to send thoughtful, heartfelt well wishes....

Tango
Posted 3/26/2015 9:04 PM (GMT 0)
I'm so sorry, Bunnygirl86. It sounds tough to be in your situation and I am praying that you will begin to feel some comfort, even joy, in the midst of your situation. I hope you find some help here. Sorry I could not be of more help.

-ICanSpellThornwell-
Posted 3/27/2015 6:14 AM (GMT 0)
Chronic pain and trying to work is a real downer. I tried for 2 years working and dealing with the pain. I got very low for awhile.
I had to give up my dream job and take early retirement. Fortunately I had disability insurance or fall back on. It covered me until my pension and social security kicked in.
Things are tighter but the stress is less. That is priceless to me.
Posted 3/27/2015 1:13 PM (GMT 0)
Thanks Ladies and Gents

I am struggling to work as is with normal pain and then a FLARE hits, that is when it becomes miserable and bleak.my body is in survival mode and cannot cry for fear I wont stop. I wish I could work part time but I cannot afford to, I filed for disability this month and am struggling with the thought of my own limitations. Things seem like they are closing in and I feel trapped by my own body I am scared and don't see how I can keep going like this, I am 28 I've been in chronic pain for 10 years now and there is no end in sight. My husband Is scared for me that it will lose it one of these days and im trying hard but things are rough.
Posted 3/27/2015 5:03 PM (GMT 0)
Hi BunnyGirl:

So sorry to read that you are in so much pain.

I have Osteoarthritis in many joints. I have Degenerative Disc Disease which is more of a condition that comes with aging. I am told that many people have OA and DDD but do not have symptoms. I wish I was one, but sadly not. Yes, we feel in our mind that we want to be well but our bodies just don't want to cooperate.

You are still very young. I am 61. The chronic pain began 13 years ago for me. I was shocked back then when my Doctor called it chronic pain. No, I thought. I don't want chronic pain. You over time accept the wretched pain. You function with pain. You work with pain.

I have continued to enjoy some aspects of my life. I am only here once. I stand beside anyone else and they cannot see that part of me is in pain. It is an invisible disability. We are only understood by ourselves.

I myself don't find crying helps much, it doesn't fix anything. I do hope you will be able to sort out your Disability. It is a stressful process sometimes. Do reach out for help when you need it. We all share one thing, pain.

Loring

Osteoarthritis in Multiple Joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...
Posted 3/27/2015 11:43 PM (GMT 0)
Bunny I am so sorry to hear what a difficult time you are having. It is a vicious cycle. The stress of work causes the flares but u have to work in order to survive which is stressful too. Your life ends up being just going to work and trying to recouperate when u get home, just to turn around and do it all over again the next day. Each day makes the pain even worse..

It is depressing and at times I know I feel very alone thinking no one understands. Just because on the outside u look healthy doesn't mean u r on the inside. People just don't understand this, especially if you put on the brave face. To prove my point I got up and went to work one day with no make up, dressed down and put my hair in a pony tail.....wow so many people said I looked horrible and that I must be sick...REALLY that's what it takes. To look like crap everyday for people to believe us.
It is very hard when u do not see light at the end of the tunnel. Last year I just could no longer work full time. It was breaking me physically and mentally. I was fortunate enough to be able to quit, collect unemployment over the summer and found a 30 hour position in the school system.

Please remember you r not alone. We r all here to help. I have been absent on this forum for awhile. Not sure why, I was in a slump. No one u stood me...then I finally said to myself...there are a whole group of people who undstand...right here in this group!!! It's good to get your feelings out and vent or just talk. Keeping them in causes more stress.
I truly hope you start to feel better and you see some light at the end of the tunnel.

Please remember we are here, we understand and care.💛
Posted 3/28/2015 9:10 PM (GMT 0)
Bunny my heart and prayers go out to you. As for how to educate friends and loved ones that while you look fine, you feel beyond horrible, try sharing our Forum Moderator's Spoon Theory http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

And try to be patient with them. It will probably be something that you will have to keep educating them about. (Speaking from experience...).

Lastly, if you don't already have it, sign up for Long Term Disability insurance next open enrollment at work. You may be ok to just go for SSDI, but of course I don know your financial situation. I was our primary earner before I became too sick to work.

Again, I'm sending you a GENTLE hug...
Maria
Posted 3/28/2015 10:02 PM (GMT 0)
Bunny,

I'm brand new here too. Although I don't have pain to the extent you do, I understand how much it hurts when you have no support from the people you love. Before getting diagnosed, when I was still with my ex, I worked full-time in retail to support him thru grad school. But anytime the pain got really bad, he'd tell me it was because I didn't eat right or take enough vitamins or didn't exercise enough. That the pain was my fault because I was doing something wrong. It got to the point where I just hid it. At work and at home. And the effect of the mental and emotional pain made the physical that much worse. Thankfully I woke up. I left him and started taking care of myself, went to the doc, and was diagnosed with fibro. That's when I realized that it WASN'T something I did wrong. Finding this forum is helping me a lot. I hope you find the same feeling of support here too, and that you find that you aren't alone in this.
Posted 3/31/2015 1:14 PM (GMT 0)
I am honestly just TIRED, The kind of tired that makes you want to check yourself in to a hospital. I need 11 days of sleep just to make it right now I feel. I filed for SSDI this month with an attorney, he said it will take 1 year, I know in the grand scheme of things that is not a lot comparatively to others but to me it is a lot of time due to my situation. I start a new therapy today to help my neck and I am frightened.


LEGALLY CAN I ASK MY BOSS TO LET ME WORK PART TIME WITHOUT FEAR OF BEING FIRED?
Posted 3/31/2015 1:47 PM (GMT 0)
I'm praying for you bunnygirl. I've been flared up for almost 5 weeks now and I feel like I'm losing it. My pain is so intense , meds arent helping and just trying to keep breathing and praying for God to relieve us.
Posted 3/31/2015 2:21 PM (GMT 0)
I can't remember if you can be fired or if it would fall under discrimination. Might depend on what state you're in. Best bet would be to call the attorney you mentioned above. He should be able to tell you.
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