I'm so tired of hurting all the time!

[Tired-o-pain]

Injections only provide temporary relief. I have already had 2 back surgeries and really don't want a 3rd. I also don't want to be hooked on narcotic pain meds for the rest of my life! What else can I do? Please help. Thanks in advance for your help and I hope you all find relief for whatever ails you.

[Jenharri]

I certainly understand how you feel. I'm very reluctant to have one surgery! I have spinal stenosis with all the usual nasty pain that ones with it. I have other problems that cause pain PsA OA & Psoriasis.

I've had injections that have given relief up to a point. My pain consultant said he could do a mild decompression using the camera no major surgery into the spine, with 75% success rate. Even he said with surgery a surgeon can never guarantee 100% success. The failures are more common than success.

They're are so any meds that disagree with me. So far the pain clinic have managed to control my pain with Butrans patch & Cocodamol with ibuprofen for breakthrough pain: although I have days with serious pain I also have very good days. Like you I don't like the meds but what can you do they don't cure they are just there to help us function. Unless by some miracle the spine has done its worst and one day goes away that's all one can hope for, this is what has happened to my OH his spine is completely fused no more pain. Yes he has pain but nothing like it was. It's different.

I just take it one day at a time now and take the good with the bad. It's not easy accepting this but I feel better in my head. No surgeon is touching my back unless I get a guarantee 100% cure that isn't not going to happen.

I will see my consultant again in the autumn.

I really do wish you and many of us a pain free future it might just go away - it can.

Jen X

[deejames in reply to Jenharri]

Hi Jen. I'm due to have sacroiliac joint fusion surgery in two weeks. Sometimes you just have to take a gamble. That's what I am doing. Best case scenario is a 70% reduction in pain in that area. For me that's worth all the major expense and trauma of this operation. It's NHS by the way but 170 miles away so I've had 5 train/ hotel expenses trips to pay for .

I am hoping that , like your husband, my lumber spine fuses in time giving me some relief there but there is nothing for SI joint pain except injections and I will only be able to have a limited number of those. The future is bleak otherwise.

Dee

[grace111 in reply to deejames]

all my best wishes for you that your operation is a success.

[deejames in reply to grace111]

Thanks Grace. I will post on how the operation goes.

Dee

[grace111 in reply to deejames]

yes deejames it would be good to hear how your operation goes, i do hope it works out for you. its terrible to hear about all the expense and trauma that your having. with all those train journeys and hotels. it must be such hard work all that traveling as well as the pain your dealing with.and alal the money your having to spend, however you are having faith and doing something about it and that goes a long way and says plenty about your character. i pray that all goes well for you and when i say i pray please believe me, i do pray, and iv done that right now as i really believe in the power of prayer. and also your faith and courage. i hope it rewarded. god bless you dear. love grace xoxoxo

[Jenharri in reply to deejames]

SI joint is the pits worse than spinal stenosis and the hardest to sought. I fully understand your predicament. I truly hope all goes well for you.

Jen

[deejames in reply to Jenharri]

Thanks Jen. I will be posting about how it all goes.

Dee

[724864 in reply to deejames]

All the best Dee. My whole back is fused down to L3 with Harrington rods either side been that way for 50years. Only thing with a fusion you have to give it time to fuse properly ask your specialist about this. Also sometimes the discs above the fusion after a few years start to deteriorate as they are doing the work of the one or two that are fused. But you have to do something as pain is so debilitating, all the best.

[Toplady in reply to deejames]

Got my fingers crossed for you with the upcoming surgery Dee, keep us posted as to your progress and experience. I haven't had a date for mine, am supposed to have a CT scan before the op but haven't had a date for that yet either! I'm really in two minds about the surgery at the moment, I really hate being in this amount of pain all the time but the thought of the risk of any increase of pain scares the hell out of me too. My ortho thinks it's a good idea but my GP, my rheumy and my pain consultant are not sure it's worth the risk. I'm spending the summer trying to 'adapt and accept' the fact that my pain condition is permanent as advised by my pain consultant, I am pacing myself, being very selfish in a way in avoiding anything that makes my pain worse and using my wheelchair at all times outside of the house to avoid huge pain after trying to walk any distance. It's beginning to work, my head is clearer and my thoughts are less pessimistic but there's always this niggling voice in the back of my head saying that the surgery could make all of this worse.

It will be very good to hear of your experience of the surgery, I am hoping and praying that it'll all work out for you, take care 💝

[deejames]

Morning tired-o-pain. I think your forum name could stand for all of us. I am sure that for us here there is not one day that we don't feel so very very tired of pain. So you are in the right place.

Maybe if you said a wee bit more about yourself and why you have pain and what treatments you have had before it would be helpful for us in giving replies.

We all have different pain journeys but when it comes down to it there is a unifying struggle to deal with our pain as best we can.

You will get lots of advice and support here.

Dee

[Hidden]

Hi tired-o-pain,

You are now a member of a growing and varied club of various types of people, we all have different symptoms and some of them have strange names some of which we can hardly pronounce ,but we all have one thing in common,a single word which is terrifying and horrendous , pain.

Pain is I feel a cruel word that is difficult to explain to our doctor and families, when we try to define our pain words are inadequate , people have to relate their pain to the pain we are trying to explain so it's a stubbed toe, a trip to the dentist, a finger caught in a drawer, a thumb hit with a hammer,these are the pains that people relate to,but our pain is something different, how do you describe agony,it's like trying to describe a colour to a blind person.

If your condition is permanent then un- fortunately you have to accept that you are disabled, in normal life people who have a grievance can rant and rave to their friends and shake a fist at the sky but we cannot but you can come here and have a rant because we do understand and we can truly sympathise , and if you have to hooked on meds then so be it.

Take care and remember you are not alone

John

[Jenharri in reply to Hidden]

Well said John

Jen

[Tired-o-pain]

Thanks so much to all of you for your posts. Sorry, I'm technologically challenged and thought I made my profile visible for everyone. I originally injured my back while working in construction to pay for college. I ruptured my L4/L5 disc and tore the L5/s1 disc. I have since had 2 surgeries after going through a year of injections that did not help much. My last surgery was in 2013, and I thought it was fairly successful (about 80% relief) but here I am again back in severe pain, on pain meds, and having to get injections again.

My surgeon now wants to do a fusion from L3 to S1 and I'm just not liking the idea. My father also has Back problems and he nearly died from a similar fusion surgery (long story but he had a bad surgeon, and there are really good ones).

Dee I'll be praying for your successful surgery. My wife's best friend had a fusion surgery 5 years ago and is doing great! It is possible!

I realize everyone here is "tired of pain" like me. It may not be cancer, but pain sure does limit your life. I'm just trying to find that balance so I can help myself instead of waiting for the doctors to do it for me which will never happen. So glad I found this board and now I know I'm not alone.

So far the only thing that has helped me is stretching. There are a lot of good websites out there that help give examples.

Thank you all for your support. Sometimes just a bit of encouragement is all we need to push through the pain.

[clare86]

I totally understand what you are going through. I has spinal fusion 3 years ago after a horse riding accident, I have bee n left with some permanent nerve damage and weakness in my left leg. The pain is so much better after the surgery, but will never be the same again. i am now having pain in my neck, thoracic part of spine and area above my L5/S1 fusion site. A recent MRI scan showed 3 schmorls nodes (vertical disc herniations) which correspond directly to where the pains are in my back, but nothing can be done as they are not severe enough. I too use Butrans patches, oramorph if desperate and ibuprofen or naproxen as really do not want to be zombified by narcotic painkillers and antidepressants for pain. Been fobbed off to pain clinic yet again, who can only suggest pain management course, but was told i am already doing everything i possibly can to help. Where do you turn to?

[724864]

You sound like me. I have Harrington rods in my back due to a scoliosis op in 1965. Injections into the main spot do not help, I am on narcotics despise taking them but no choice so I don't know what to suggest. I know there is a procedure where they can insert a pain reliever near the spot inside the body you control the pain medicine which is directly sent to where the pain is. I can't have it but it may help you and won't hurt enquiring about it. All the best I know the feeling believe me.

[Hidden]

I feel your pain Tired and the pain of having back problems... like me I feel you are inflamed and that your pain will resolve as the swelling goes down.. of course I could be wrong... I was in severe back pain/sciatica the hold 10 yards... within 24 hours I'm pain free.... When I think back I'm remembering when I did have flares, even with all the pills, injections that if I gave my body time to heal itself the pain would go away on it's own... I screwed up the first time I hurt my back and had surgery 'big mistake' the surgery was a failure and although it took a few months the pain went away, I figure the swelling was down and I was good for about 4 years until a little over a month ago when doing dance aerobics with the young 40 year olds

[Dexter1 in reply to Hidden]

Nurse1946, you said within 24 hours you were pain free but didn't say what you did to get there.

Mind sharing?

[Hidden]

You know Dexter, my Doc even don't know what happen with me that my back pain just went completely away.... I do take a lot of natural products the thing I'm thinking now is it might have been the Colostrum I had started taking... I posted this to my fb group this morning although I'm not sure it is what reduced my pain but it does build the immune system so and here is something I did find.......... Remember that colostrum will produce results that can be felt or seen only about 95% of the time. This is significantly better than most prescription medications as they only have to work in 30% of the individuals being treated to be approved by the FDA. Those who are taking colostrum to maintain their health may not notice any changes in how they feel. "You don't have to be sick in order to get better. This is particularly true of bodybuilders and athletes who are in excellent health. I have found that people in good to excellent health sometimes do not notice any improvement while taking colostrum. However, they do notice not feeling as "good" when they stop taking colostrum. For some, stopping the colostrum temporarily may be the only way to get them to recognize the benefits. From talking with a great number of people about how much colostrum they take to obtain relief, a few general guidelines have evolved.

In order to: Number of Capsules twice per day

to maintain good health - 1-2 Capsules increase energy level - 1-3 Capsules decrease fatigue - 1-3 Capsules decrease stress levels - 1-4 Capsules control allergies (hay fever) - 2-3 Capsules control arthritis pain - 4-6 Capsules decrease asthma symptoms - 2-4 Capsule improve the symptoms of fibromyalgia and chronic fatigue - 3-7 Capsules improve irritable bowel syndrome, endometriosis, and menstrual pain - 2-5 Capsules control sinus problems - 2-4 Capsules control anger - 2-3 Capsules assist in resolving acute illnesses such as flu, sinus infections, sore throat, bronchitis

Increase usual dose by 1 - 3 Capsules twice a day.

[SecretlyDisabled7]

If there is nothing to be done about the pain, you need to consider a life with medications. It isn't a matter of being "hooked," but one of being normal and like other people, not suffering all the time.