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Pain, pain, go away! Come again another day

Jul 16, 2015 7:00 AM

I am living in a world where pain dominates my life, I have done so for several years now and there is not much hope of ever returning to the life I had before. I've not had an accident which has led to my disabilities, no. I have been diagnosed with:-
Degenerative osteoarthritis in my spine, it has destroyed my knees, my feet, it is centred in my spine and has caused two current stenosis one in the lumbar and the more serious one in my neck at C3/4, threatening to paralyse me at any moment. I have been walking around with a broken neck for two years now, and finally it has reached the stage that emergency surgery is now the only option to save what little life I have left. The neurological team have been unable to operate until now because I have acute fibromyalgia which increases any pain by up to 70% and the risks of surgery combined with this has been too great so I have had to suffer in reletative silence.
I am on huge amounts of opiates which barely touch the sides of my pain and sometimes it has been ever so inviting to just take a load of them and fall asleep, never to awake, yet never return to consciousness to face a life of unimaginable pain
I read the topics on the forums often, yet I get no solice, no feeling of support from them, all they seem to do is talk about God! God is good, God is powerful, God is thinking of you, prayers, Jesus, and again God. Why oh why do we have to have religion involved in these forums, it drives me nuts!!

Jul 16, 2015 8:07 AM

I think a lot of time we discuss God is because many people try reconcile having faith while going through extreme pain. Many have wondered why would a God of Lova allow me to go through this much pain. If he were powerful, he should be able to take away my pain. I should be better. I should have a better life. I would have no need of hope. People have become quite bitter at God because he has been blamed on the things that we have been going through. Some people suggest or even think that he test us. But that is far from the truth. A knowledge of God and a sense of spirituality has been known to help many people to deal with pain and illness. It has been documented in medical journals. They actually feel that there is a specific part of the brain that this takes place in. When you think about it, when you pray, most people achieve a sense of relaxation and meditation that reduces pain. It gives them a sense of peace that reduces the stress that they are feeling over what they are feeling or they are going through or impending treatments ahead. It reduces the stresses and gives them a better outlook. I am not recommending this to you. I am telling you the therapeutic affect this has had on people and myself. I don't know what I would do without knowing that this is not what God intended for me. That he never wanted this life for me. And that he plans on doing something about it. That gives me hope. I take comfort that even though he says he won't take away my tribulations, he will give me the tools to endure them. And he does comfort me with spiritual food from the bible. I am not wanting to sound like a preacher. I am just showing how faith can be a benefit in illness.

But I can understand you on the other hand. You could be just not wanting that in a group or feel just like I mentioned. And based on your experiences, I could understand that. No one should judge you. I hope you do find places of comfort in some of the post here but some people do need hope to..

Jul 16, 2015 9:24 AM

I totally understand where you are coming from on the religion thing. I don't follow any religion and am of the opinion that people can believe what they want as long as they aren't hurting anyone or trying to force it on others.
what i have noticed is that people seem to need to believe in something greater than themselves, especially when faced with challenges like chronic pain.
I don't take offense when someone says they will pray for me, to me it means that they will be thinking of me and that is a form of support.
I'm sorry you are going through so much. And im sorry that i can't do anything to help you.
Im sending you a virtual hug and hoping that you will find the strength to hold on. Hugs!

Jul 16, 2015 7:53 PM

I try to ignore most things said about god, but that's just me.
It is really hard to do, I was waiting at a bus stop with my cane one morning and a woman decided to pull over and try to get me to convert. I don't even remember what, but she was convinced it would make my life perfect. I just thought she was ignorant, and stupid. I'm 14, and using a cane. It's pouring rain. She's creeping me out and getting in my face. I tell her that I'm fine, and am thankful when she leaves. Then I started crying because I was feeling awful and just had to deal with it.
I have come to resent religion, although it isn't always bad. It's a problem when people get denied access to medical treatment because of their religious beliefs. It's a problem when you're yelling at a dying human being for not having faith.
I am sorry this has not been a place of support for you. Are there other places you find support? I know I only say certain things on here, then different things in Facebook groups, etc.

Jul 16, 2015 9:15 PM

Apprenticelife, I am so sorry you are in so much pain and facing emergency surgery. I do understand the osteoarthritis (OA) because I also have it all over my body, with the fibro. I've had cervical fusions C4-C7 already. Currently C2, C3, C7, T1-2, T11-12, L4-5, & S1-2 are being affected by the OA, and its worse in the neck. My doctors have told me that because of my previous surgeries they cannot correct the C2-4 levels, because of the risk of paralyzing my ability to swallow and/or speak. They said it would have to be a life threatening emergency for them to do any more spine surgery. So I've been left to deal with the pain from the OA without their help. So I do understand the frustration at the pain, doctors, health.

I do believe in God. It's your right and freedom not to. I would never treat you differently or be judgemental because of it. My grandmother raised me to treat others how I would want to be treated. So my explanation is only intended to explain who i am, what I'm like; it's not in judgement of anyone.

As Gotobef said in her post, when I say I'll keep someone in my prayers & thoughts, or I'm praying for them, it's because I do try to remember & mention them/their pain & needs when I pray. It's been my way of life for over 40 years, it's just a natural instinct and reaction, just like getting dressed. And my beliefs in God are what helps me through my daily pain, just as Profiler mentioned. It's how I am able to try and stay positive in spite of all my pain and medical issues. Other than having the OA damages and related pain in common with you, and letting you know I understand how much it hurts, there is nothing I can do to help you, nothing other than prayer. It comes so naturally to me, to pray for others I see suffering, I just automatically say a prayer for them. I've asked God to help a lady who's car was broke down on the road, I've prayed for families found homeless, I've prayed for people from news stories. I've prayed for anyone I've interacted with on here. It's because its all I can do for others, because I care that they are hurting or are scared or whatever they say their needed is. I apologize if you have been offended.

I do hope you find some support and much better relief to your OA pain. And I hope any surgery you have gives you the results you expect. I also hope you can find ways to cope through the rough days. 🙏🌼

Jul 16, 2015 9:26 PM

Apprenticelife, in sorry that you are suffering so. I'm also sorry to hear that you don't find support in the posts that you have read. Most of us are here with several diagnosis of different diseases, syndromes or illnesses. The common factor that we all share is chronic, unrelenting and unbearable pain. There are many that put their situation in God's hands and it gets them through some really bad times. I have had many times where I have questioned my faith. I've prayed with no answers (or so I thought) and I found this community family. There are many who pray for one another, myself included, but nobody is trying to force you to believe or think you'll get all better if you do. I pray and have never been able to get relief from my pain, the thing that I HAVE gotten is a group of people who understand. I mean REALLY do understand what I deal me because so do they. This is what I find comfort in, the fact that I'm not alone. When I speak to family and friends, they think I'm complaining, don't know what to say to me, and there is little or no support. Now, that being said, when I do pray, I think the distraction and also the group help me to deal with my pain levels when I can no longer bear them. I live with a pain level of an eight on medication and it's a nightmare. I use biofeedback and meditate, I also try to get lost in some music that relaxes me. I appreciate the prayers that people say on my behalf and I also say prayers for others. I think that what was given to me through praying is not relief from my pain but the ability to speak to caring people that understand as well as being able to be here to help others which ultimately helps me feel better. Just being here to be one who understands through pain and anguish and being able to tell others that I'm here for them when they need me to be. THAT has been my gift. I hope you continue to write posts and communicate with the group. You can vent, share your stories, rant, give your opinion on what is being said and there are no judgements. That is all this community is about. There are many folks here from many ways of life from very religious to total atheists. All have the right to believe what they believe and have their own opinions. However, whether athiest or religious, in the end, we all care for one another. I hope you have a peaceful night with less pain and wake feeling more relaxed with less pain. I hope your surgery goes well and that you have a rapid and complete recovery. I will keep you in my thoughts. 💕🙏🏻🌻

Jul 17, 2015 1:33 PM

Apprentice elife

Jul 17, 2015 1:47 PM

Oops accede tally hit the wrong button. Apprentice life I want to welcome you to our chronic pain family. As Flappsy and Alwayz said I too am a Christian and I also say I will pray for someone it is something I do without thinking. If it bothers someone I try not infringe on their beliefs, and do it again. I am sorry you feel this way,because it gives me comfort to think someone prayed for me. I hope that you have a restful as pain free day as possible. I to have OA, as well as Syrinx, Syringomyelia, Fibromyalgia. My pain level is between 7-8 on good days on bad days 8-10 so I understand where you are coming from, it can get to a point where you don't think you can go on. Believe me life is precious, even when we hurt. I enjoy my granddaughter so much even when I am hurting so bad I want to just lay down.

Jul 30, 2015 7:21 PM

Well, I have to say thank you to you all for responding to my post. Such wise words from you all, allowing me to realise I am not alone, no matter where I go, there will be someone somewhere suffering in agony much the same as we do.
So where does one go from here?
I am to have an ACDF at C3/4 C4/5 and from the explanation Alison and I listened too, it is not without risk! You see, I have been degenerating since 2009, I've been wrongly diagnosed with Ankylosing spondylitis, Lupus, bone cancer and one or two others since my journey began, and only recently did they gain a correct diagnosis, OA, Fibromyalgia mixed in with a few other things too. Yet they have known about the issues in my neck since 2013 and done sweet fanny Adams about it. It is clear to see the damage these discs have done to my spinal column, they have migrated into my canal and have been destroying my nerves, this damage is sadly permanent, however they are unsure as to which nerves have been destroyed, the worry is that when they take out the discs, and the pressure is released off my spinal column, the extent of the damage may paralyse me. I will never be able to walk without a cane of this they are certain.

I feel a little better now, knowing that I can write my thoughts down and share them with the forum, not being able to discuss my feelings with Alison has meant I have become depressed, suicidal at times. So many thanks to you all for the support you have shared with me, I hope to be able to do the same for others in the future.
Kindest regards
Peter

Jul 30, 2015 8:29 PM

Peter, I'm glad you responded back and that our posts let you know... We are all in this together! I know from what you wrote the fear of being paralyzed. I too am afraid my docs are going to wait too late. Just try to stay positive and believe that the surgery is going to go well, and the doctors are wrong, that you will not be paralyzed. It's very hard to be brave in the face of the "what if" fears that run through your head.

I've gone under the knife way to many times, and each time it gets harder to focus on the positive. My last three procedures I either recited "The Lord's prayer" or hummed any Christian tune (happy one) I could think of. It helped keep the fears that threatened to overwhelm my mind at bay. I had to start using a cane/walker daily and sometimes an electric cart in January. At 53 it makes me feel old. But I risk falling if I don't, because I have weaknesses, imbalance, & dizziness. I've accepted it and truly, people in public are so polite.

When you go to surgery, find something to think of, good, happy thoughts, maybe a special time you spent with Alison. And know that we are all pulling for you to come through, each of us in our own ways. I will continue to pray for you & Alison. This will be difficult for both of you, surgery and recovery. But you can do this, and we're here for you. Please keep us posted on how you're doing. 🙏🌼

Jul 30, 2015 10:10 PM

Hiya Peter! Im not religious and at first found it a bit off putting. But I figure if members can speak freely about their religion then I have a free pass to swear!! It's win win when you think about it 😉

Everyone here is pretty great, I hope you feel more comfortable posting now.

Jul 31, 2015 11:25 PM

SweetSassy, you're too funny!! I can tell you that I pray AND swear. I really DO have potty mouth and try to keep it at bay but if I'm having a bad day, I can't make any promises.. LOL!!! 💕

Aug 01, 2015 9:59 AM

Sweetsassy, you are right. This community is supportive no matter what our differences. I am a Christian, but I'm not perfect and I've let slip sometimes. 🙏🌼

Aug 02, 2015 9:01 PM

NoThetre what I have to add for all of us that suffer with chronic pain. I know from over 25 years of experience how stressful and hard it is to get by everyday. There is always something to worry about how to have a good day then the constant worry about refills.There is one thing I tried to remember there's somebody else that wishes that's all they had to deal with.
Not to say that living with chronic pain isn't a you know what. For now were alive and that constant pain let's us know that we are.

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