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I want to die - MPS Pain Has Turned Life Upside Down

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Posted 8/27/2014 1:55 AM (GMT 0)
I have had chronic pain since 2006 with the typical rollercoaster of good days and bad days. The worst of it has been over the last few years because, in addition to having pain, I have been under tremendous stress to try to find work. The stress is causing me pain. After being laid off for two years, I found a job in a very stressful environment. I was flared up much of my time there and left in December. I made the mistake of divulging my physical issue and they tried to make my life miserable.

Since my departure from the job in December, I've had interviews but no job offers since then and it's taking its toll. More recently, I have had phone interviews, one with an interviewer who was so rude that I don't want to bother trying anymore.

I'm depressed, feeling suicidal (I have never felt like that before). Meanwhile, my doc will not give me anything more than Flexeril. Cymbalta isn't doing much for pain or depression at this point. Life seems futile and I just want to die.
Posted 8/27/2014 2:07 AM (GMT 0)
I am sorry you are having such an awful and stressful time! Chronic pain is always tough, and when we have to deal with lots of people who just "don't get it", it makes life a lot more challenging. I know there are people here who will offer you lots of good ideas for everything from how to handle the pain, the pain docs, and work. Along with lots of support.

If you are feeling really bad, and like you might act on those bad feelings, you HAVE go get help right away, whether that means calling a friend, a doc, or even 911. Do whatever you have to do to keep going and to stay safe. That is the top priority!!

If safety is not a problem at this time, maybe you could either try to focus on something else for a bit, like a TV show you enjoy or reading a book, or looking up something funny online. Just find something to get lost in for a while. I know, easier said than done!! Otherwise, maybe take a little time to tell us more about you, what's going on. I know when I first came on here I expected people to be really smart and know about lots of different things, but the members of the forum have really surpassed my expectations, both with their knowledge of pain and the human body/mind, but also just with the support and help they offer. You have come to the right place.

Give it a little time, and you'll meet lots of wonderful people with a lot to offer!! JUST PLEASE STAY SAFE, AND CALL FOR HELP IF YOU NEED TO!!
Posted 8/27/2014 3:32 AM (GMT 0)
I too am sorry for your suffering.  I understand the futility and the frustration.  We all cross the line into hopelessness and perceive that feeling as a death wish.  I think what we really desire is to HAVE OUR LIVES BACK or at least some semblance of quality of life.  Speaking for myself, I've traveled this road of pain alone for far too long.  I, like you, have chosen to reach out to the good folks on this forum.  I, like you, am no longer in this by myself.  HUGS for a restful night and that you'll awaken tomorrow feeling better about your life=)
Posted 8/27/2014 3:59 AM (GMT 0)
I know I've been at that point where I just didn't think life would turn around.

Now,looking back those times were just a speed bump.

When I first started having back issues I was in my late 30's.Doctors were giving me skelaxon or the other anti-inflammatory.

I had to find a Doctor that treated me like a grown Man and help me a little,at least.

Hang in there.Your luck will change.

Be honest with your Doctor and if you're not happy with them then try to find one that you can talk to.

It takes a little time sometimes for a Doctor to see that you're there for the right reasons.Your health.

I've been seeing my PCP 12 years.

Hang in there.

God Bless,

Rick
Posted 8/27/2014 11:26 AM (GMT 0)
Welcome to the chronic pain forum at HW! Like Sunny said if your really feeling you may act please call someone! You can visit HWs depression or Anxiety forum and both of those forums have a resource thread at the top and both have some awesome folks to walk with you through this time and feelings!

I can assure you most of us have been where you are and came out the other side. I'm guessing you have myofacial pain syndrome for those not sure of the abbreviation? We have some current members who suffer this very debilitating syndrome and I'm sure they will drop in.

First and foremost is finding a Dr whose willing to treat you versus pacify you!! Have you tried getting into a teaching hospital? Finding a specialist whose familiar with MPS? Your not going to get past this point without having a good Dr onboard!! No matter what it takes you have to make that happen! Getting the right meds, pain under control as well as depression is the first step. From there exploring your employment options or applying for disability will fall into place, again a good team of Drs is vital here!

Start today, see what's near as far as university med schools, they take medicaid, based on income, or indigent ppl in need and get your foot in that door if you have to go via the ER.

If you need more help locating someone in your area we have some awesome research folks here that can find info for you, just ask.
Posted 8/27/2014 12:39 PM (GMT 0)
Is your problem Mucopolysaccharidosis? That's a tough one.

I read a lot of great posts above, hope you will read them carefully too. The writers had a lot of good suggestions.

Sorry we can't diagnose or treat or take away your problems. We do care though! I hope you will continue to post.
Posted 8/27/2014 1:23 PM (GMT 0)
It's time to find a doctor that will give you a referral to a pain management doctor. Once you are able to control your pain life will change.

I too was at a job I hated. I didn't even want to get up in the morning and go deal with my boss. He was a jerk to everyone. The good news of all this is I became a better person and became really good at what I was doing. After a few years there I decided it was time to move so I started looking. As fate would have it the same job my wife applied at right by my house was hiring again. We called this the "Holy Grail Job". A day after submitting my resume I was called in for an interview. With my best suit on I had a great attitude because I already had a job. Afterwards I found I was tied with a girl they like (they had 12 applicants). I was called in for interview number two. Again, it went really well. Long story short I got the job, it's awesome money, it's 2.2 miles from my house, our building in the penthouse and my view from my office is awesome.

The moral, I was exactly where you were, I got control of my pain and then my career path took a turn for the better.

My office view, South Florida, can just about see the ocean.

LINK NO WORKY.
Posted 8/27/2014 3:36 PM (GMT 0)
Thank you all for your responses. Perhaps this is where I need to be spending a little time.

I have myofascial pain syndrome and possibly Fibromyalgia. I don't have the fatigue but am probably a bit tired from the hormonal fluctuations I'm going through as I enter my 53rd year on this planet. I have a Dr. who is considered to be one of the better docs out there. However, he got out of his own practice and is in a practice run by a large health care facility now and seems to be pacifying me. I have a good rheumatologist (people generally like her) who was concerned that I have Ankylosing Spondylitis. But I haven't been convinced that I have it because I don't have pain in my Sacriollic Joint area.

My primary doc will not give me anything else for pain because he is concerend about drug interactions with Cymbalta and Flexeril. I was doing ok for quite a while and have managed to spend days sitting on temporary work assignements but I recently flared up after a bunch of car travel. I wanted to pull out of an overnight trip to a wedding but my husband tried to lay guilt on me.

Finding a job that I can deal with is another major issue. I obviously cannot work in a chaotic nonprofit that has few staff and no money because you generally end up doing everything and take heat when you mess up (because you're so inundated at work). I did talk with a career specialist at our State One-Stop today and we talked about options. She was encouraging and helpful.

I went to a Nurse Practitioner about exploring the possible hormonal connection between my stiffness. The pain does seem to cycle and is really noticable about a week before my period. My primary doctor had a fit because I did saliva testing and finally ordered a bunch of tests for my hormone levels and other things (Vitamin D, Thyroid, etc.).

It may be time to switch drugs (with the Rheumatologist) and primary doctors. My doc is 67 and I have to believe that he's phasing himself out of practice.

My biggest point of stiffness and pain seems to be my neck. The muscles are chronically tight and the tissue is irritated because I keep moving my neck to loosen it up. I'm going for PT today and a massage next Tuesday. The financial burden of these treatments is tough to swallow,

Has anyone out there found that their hormone levels (or lack of) have played a part in their pain? What have you used to help myofascial pain? How have you coped with working a job and being in pain.
Posted 8/27/2014 4:01 PM (GMT 0)
I cannot answer your question about hormone levels as I was very young when I had a hysterectomy. It really sounds like you need to consider looking for a new primary care physician. A good place to look is Vitals.com.. I am not convinced he would do much for your pain anyway, as most primary care drs will not treat a chronic pain patients. Now that we have new rules & guidelines in place on treating chronic pain patients, they want no part of that mess.

Have you had an MRI of your neck? If so did anything show up or what? It sounds like your rheummie is the best of the bunch, perhaps your rheummie could order an MRI if you have not had one.

I worked a lot of years with chronic pain in a high stress job. I had a great pain mgt dr that was taking care of me & it is because of him that I was able to work. There were a lot days when I was ready to jump out a window but I always managed to pull through for whatever reason. Everyones pain is so different, what may work for one may not work for another. It is a matter of trying all sorts of different things to find what works for you. I really do not think there are any magic pills out there either than takes the pain completely away either. Hopefully you can get some real answers.

Take care.
Posted 8/27/2014 4:07 PM (GMT 0)
I'm probably going to sound a bit like an echo because you've received some great advice from everyone here.

My PCP was very hesitant to treat my CP because frankly it's not her area. They don't have the understanding of CP that a pain doc has.

I would encourage you to get into pain management sooner rather than later. So many of us here can empathize with you as we know what it's like to have CP dominate our lives, where every decision, every move, has to be revolved around our pain....

Being able to manage the symptoms as well as the fallout and repercussions is part and parcel for having CP.

We understand feeling desperate, and scared, frustrated, isolated, not understood,....we really do. You aren't as alone as you may think.

Keep posting with us here, and I'd encourage you to consult with pain management and also therapy (psycho) to cover all your bases. I have my own cocktail of meds, PT, gym, my doggie, psychotherapy, and of course, this amazing forum. Once we start staying on top of what's going on, we feel more in control of events. Honest! I'm living proof of that.....

We are here for you!

Hang in there, and always, always call someone if you feel at risk.











M.
Posted 8/27/2014 4:57 PM (GMT 0)
Find a Gyn preferably women's center specializing in fertility! I suffered horrible migraines throughout my childbearing years and for years found no answers with little or no relief! As luck would have it I got pregnant at 41 after having a ruptured placenta 5 years earlier and was sent to a Women's center at the University of KY for OB risk at it's highest! Looking at my history, going over medical records as soon as my daughter was born I was tested extensively and immediately started on HRT, never had another cycle and never had another debilitating migraine! Headache sure but nothing like those years.

I have 4 daughters and 2 have the same migraines and both went onto HRT to control them.

Yes I'm a firm believer that hormones play an integral part of head and neck pain.
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