Alone

[jeepers77]

I realized last night that I have absolutely nobody to turn to.
I wouldn't .ca myself suicidal but I really don't want to be alive anymore. Every day is a struggle to get up and get stuff done, I have chronic pain and I'm so tired of the fight. My husband thinks it's in my head and that I just need to change my way of thinking. I've tried it's not working. I need help.

 

[herbavore]

There is nothing like pain or grief to make you feel totally alone. Have you ever considered a support group? Call your local hospital and see if there is a support group for people with chronic pain. If there is not, they often hold classes like yoga specifically for people with pain and that could be a source of support. Living with someone who thinks it's " all in your head" is salt in the wound. I would look for a non-threatening way to show him this is not at all helpful--maybe even a couple counselor could help with that conversation.

 

[solidsnake77]

I feel so identified with you, I have chronic pain too since 6 years ago, and I am detoxified of opiates almost 1 year, I was on them for 4 years. Sometimes I think that being alive with this it's a continuous struggle, and sometimes I feel there is so many suffering and only a bit of happiness or really good moments (at least when they happens, are really good sometimes, in a big part thanks to my girlfriend).

My chronic pain is idiopatic, the doctors made me a lot of tests and there isn't nothing, but I have A LOT of muscle tension, and when I go for a massage in a few days I feel so much tension again, it's tough. They made me in august an infiltrations of botulinum toxin, that supposed help in this cases, but I don't feel any improvement in fact I think I have more muscle tension than before they put me the toxin. Now I manage my chronic pain with kratom (a lifesaver plant btw), first I took 3gr for a couple months, but lastly this last weeks my doses go between 3-6g on daily basis. A few years ago they thought that was psychosomatic (in the head) and my mother for a little time believed too, but luckly it's not the case since many years ago.

Sometimes it's hard this endless struggle, but the only option is keep going ahead and stay strong. I send you all my hopes in this, are you contacted to the pain unit?

 

[jeepers77]

I have a pain Dr I see once a month, I'm on 3 types of meds for the pain. They don't really help much, but it's better than nothing.
I have a condition called interstitial cystitis, it causes ulcers inside the bladder, lots of muscle spasms and pretty much constant stabbing pain. The hardest part is I work in the healthcare field, my shifts are 13 hours long. Making it through my work week is torture. By the end I am physically and mentally exhausted. I have nothing left to give to myself or my family. I've done every treatment on the market for my disease there is no cure. My family knows the pain is real, they just think the depression is all in my head. That if I changed my way of thinking it would get better. My husband always says that if I stopped living in my head I'd feel better, he doesn't understand why I'm so unhappy, why there's days I can't stop crying. I don't even understand it most of the time. I've tried counseling, but it's so expensive with no real difference. I know I'm at my breaking point, I just don't know what to do about it.

 

[Ziiirp]

I can relate. How long are you in that state already ? After a few years you'll get stronger and don't mourn anymore about your decreased ability to form close relationships to average Joes and Joanns. I don't know, in which generation you are in but in my one and the younger age groups everyone got extremely superficial anyways and the isolation of individuals will increase even more due to the use of technology to communicate, which keeps you away from living in the moment and absorbing your environment, your home. In fact I don't know one happy person in my direct entourage. They are all only getting by, whether they have physical problems or not. Craving your old self will not help. The only way is adjustment. It is painful, but it will get better (at least mentally).

If you are in chronic pain and need more extreme occupations, that keep you from falling into a negative loop, then so be it. Exercise a lot but don't mismanage your body.

 

[jeepers77]

I was finally diagnosed 3 years ago, although I've had this over 10 years. It's hard to find anyone to talk to, although I live in a large city there are absolutely NO support groups for any type of chronic pain. I've tried a few of the groups but again the people couldn't relate to what I have going on.
I hate whining and dwelling on it, but lately it's been really bad. The physical and emotional.

 

[Ziiirp]

That sounds hardcore. I would not even endure 13 hours shifts, when I was healthy as a kite. Aren't there options that you are classified as semi-invalid due to the disabling pain waves ? You could work part time and self-employed after you are assured a little monthly rent for physical invalidity.

Is there the option of a promising surgery ? Maybe you could collect donations to finance it. It does not sound like an ultra-exotic condition. Did you try every alternative/herbal remedy ? Cysts are usually the product of hormonal imbalances (correct me if I am wrong) in certain body locations. There must be a cure, that at least stops the cysts from growing. You should really try to phone a few experts on the subject and then together fight the cause instead of just treating the pain. Good luck ! You should really try anything for your health. You are important ! It seems to me, that your condition is just semi-chronic (because you did not find the right specialist), so pain-free, sober self is not unreachable.

 

[jeepers77]

I've either been to, or have talked with 10 different specialists. And am working with a homeopathic specialists now. There is absolutely no cure or effective treatment for my condition. They don't even know the cause of it. I've researched treatments in other countries as well. This is why I've become so depressed over this. It's hard to find a light at the end when there is no end in sight.
As for my job, the ironic thing is I'm a nurse. I work on a critical care floor of a hospital. I've been thinking about going into an administration role and will probably have to. But I got into my profession to care for my patients, not do paper work.

 

[Ziiirp]

Sorry I confused your condition with some other imbalance, that causes cysts. I see, you already went to a lot of experts. But over the course of the spreading of that disease, did you, over the years, realize any possible causes (consumed food, pills, general physical state), that exacerbated the pain ? I just read about the condition and it seems, that no general cure is known for it, so your best bet now is reducing your personal stress level and then calmly (as possible) analyze the roots of that condition.

This advice sounds ridiculous, but I also have an incurable condition (luckily with less pain involved most of the time) and after a few visits to the doc I decided to adjust my lifestyle to my physical needs instead of pretending, that I am still 100% healthy and can do anything, that healthy people do. You and anyone else cannot expect from yourself to perform 100%, when you are simply not able to do that physically. It might be difficult for a nurse to step down at work (step down with helping people), but in order to win over this condition, you have to invest a lot of time and effort (blabla) and have to priorize yourself first.

 

[jeepers77]

I've either been to, or have talked with 10 different specialists. And am working with a homeopathic specialists now. There is absolutely no cure or effective treatment for my condition. They don't even know the cause of it. I've researched treatments in other countries as well. This is why I've become so depressed over this. It's hard to find a light at the end when there is no end in sight.
As for my job, the ironic thing is I'm a nurse. I work on a critical care floor of a hospital. I've been thinking about going into an administration role and will probably have to. But I got into my profession to care for my patients, not do paper work.

 

[bomber]

Why can't you turn to your hasband.

 

[VastEmpty]

I have a pain Dr I see once a month, I'm on 3 types of meds for the pain. They don't really help much, but it's better than nothing.
I have a condition called interstitial cystitis, it causes ulcers inside the bladder, lots of muscle spasms and pretty much constant stabbing pain. The hardest part is I work in the healthcare field, my shifts are 13 hours long. Making it through my work week is torture. By the end I am physically and mentally exhausted. I have nothing left to give to myself or my family. I've done every treatment on the market for my disease there is no cure. My family knows the pain is real, they just think the depression is all in my head. That if I changed my way of thinking it would get better. My husband always says that if I stopped living in my head I'd feel better, he doesn't understand why I'm so unhappy, why there's days I can't stop crying. I don't even understand it most of the time. I've tried counseling, but it's so expensive with no real difference. I know I'm at my breaking point, I just don't know what to do about it.

Jeepers -

It broke my heart to read that you have ICS. I have it, too. It's such a terrible illness. The way I describe it to people is that it feels like you have a bladder infection every second of the day - except you don't and they can't treat it. It's not common to have ICS, but every time I hear someone has it, it makes me sick. I'm so sorry.

Can I ask - how old are you? 39? That's far too young for chronic pain. I got diagnosed when I was 26. I'll never forget going to the urologist and having to fill out a questionnaire when I got there that had a question "what would your quality of life be if you had to,deal with this for the rest of your life?" I didn't fill that one out...anyway, enough about me.

I know now there is no cure for ICS, but have you tried any method of reducing pain that Drs recommend? Like bladder instillations? What about vaginal Valium suppositories (sorry guys if it's TMI)? Those helped me a lot. Also, have you tried,lowering the PH in your body? just a few ideas.

hang in there.

- VE

 

[herbavore]

A parent at the school where I used to work had this condition and she had suffered for 8 years before trying CBD oil. I do not know amounts or how long she treated herself, but I do know that she no longer suffers from the condition. My husband is currently using CBD oil for cancer and it is not cheap unfortunately. We do live in a medical marijuana state and he was given a prescription by his oncologist but of course insurance does not cover the cost.

The reason that your family reacts as they do is that they themselves feel helpless. They want for there to be a "fix". What is sad is that of course that is what you want, too! It is too bad that we are never taught in our culture how to be in the presence of others' pain and suffering. It is a difficult thing to be ok with your own discomfort in the face of someone's suffering but it is the only way to support that person emotionally.

 

[jeepers77]

I have done every treatment, including several experimental ones. I've just come to except that this is something I have to live with.
It breaks my heart when I come across others with this condition, because I truly wouldn't wish this on anyone for any reason.
The hardest part is feeling so isolated, and alone. There's days that just getting out of bed is a huge accomplishment. I hate people assuming that I'm making this up, or that I just want attention. I've even been told that it can't possibly be a "real disease ". That makes me so angry!
Honestly I know my family love's me they just feel helpless, and frustrated that they can't help. Other days I don't think they believe just how bad the pain can be.

 

[Ziiirp]

I have done every treatment, including several experimental ones. I've just come to except that this is something I have to live with.
It breaks my heart when I come across others with this condition, because I truly wouldn't wish this on anyone for any reason.
The hardest part is feeling so isolated, and alone. There's days that just getting out of bed is a huge accomplishment. I hate people assuming that I'm making this up, or that I just want attention. I've even been told that it can't possibly be a "real disease ". That makes me so angry!
Honestly I know my family love's me they just feel helpless, and frustrated that they can't help. Other days I don't think they believe just how bad the pain can be.

I know this feeling. In acute pain phases I could not tolerate anyone near me, because the pain made me pretty aggressive and detached from my body. And others do not understand YOUR type of pain, that is why their pity does not comfort one in the slightest, even if they have another bad condition, they won't get your specific sorrow.

A question : Is it possible for you to get rid of the pain through excessive motion aka endurance sport ? It worked for me, because my wound is not affected by repetitive motion (not of the injured body part). Running works. If you currently do not have a physical cyst, that is causing the pain I would suggest you to try it.

Sorry, if it is not possible for you. But there must be any activity, that makes you transcend your body and forget your pain for a few minutes. Maybe singing aloud or rapping or punching a dummy figure/punchbag. If you have pain when in the horizontal position, maybe it gets better when you do a headstand. There must be one specific position/activity, for which the pain is minimal. To find that posture should be your first aim imho. Good luck !

 

[TheGrasshopper]

When I have no one to turn to, I turn to myself. Remember when you where a kid and you would play pretend alone, talk to yourself even, obviously you know your talking to yourself, but it helps. One thing you can ALWAYS count on is yourself. Mentally, at least.[