Referral pain: Referral pain is still pain that... - Pain Concern

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Referral pain


Referral pain is still pain that has become chronic over time. Being in constant pain is so tiring. When I wake I hurt and I am sore and swollen in my hands and my arms hurt; and this continues all day, right up until I go to bed. My pain level from one to ten is a 5 when I wake up, 7 by noon and 10+ by bedtime.

My doctor's job right now is trying to pinpoint where the pain and inflammation is starting from and try to correct it or control it at least. That is what we are doing now, managing the pain with therapies and medications. I grow my own medicine's and sometimes I do take it, but it tastes awful. I have been encouraged by my massage therapist to ask my neurologist or family doctor to refer me to a Rheumatologist because I already have some of the markers for Fibromyalgia, this does run in my family, so I have learned recently. I am not a good candidate for surgery thanks to the osteoarthritis that is running rampant in my spine. I hope to get some better answers instead of guesses and maybes soon. I am confident that this pain will not consume me and I am grateful for my spiritual work. Working with the gods and goddesses helps me cope.

Have a great day.

here in the picture is our feverfew, it is a great herb/plant that aids to pain

14 Replies

Hi Acaana, I just wanted to let you know that you are not alone in the pain you describe. I have many spinal issues very similar to yourself, DDD in all cervical and lumbar discs, facet joint disease in lumbar, osteoarthritis in all majors joints including spine and lots of other stuff so I know what you feel like when you wake up in the mornings. I dread going to bed as I do feel a little less pain and am more mobile at the end of the day as long as I have rested and paced myself but then don't sleep well so never feel energised and the vicious cycle starts again when morning comes. Pacing has been the hardest thing for me to learn as I was so active before and mentally it has been hard to come to terms with the fact that I can't do the things I want to do.

I have seen many different consultants orthopaedic, neurology, neurosurgeon, pain specialists all paid for privately so I could find out quickly what was causing my pain. I do hope you're successful at pinpointing where your your pain and inflammation is coming from. I never have had that answer so have been seeing a very clever private physio since April who has really thought outside of the box for my pain. She is doing a great job with lots of different techniques, it is just very slow tiny steps forward, but at least I am going forward 😃. My back muscles were going into spasm whenever I stood, sat, lay and walk. I was getting massive electric shocks all the time on top of the other pain but these are gradually reducing as my physio sorts my muscles out and I do my exercises and swimming to strengthen my core and activate the muscles that had 'switched' off. Apparently my muscles were in a real mess following surgeries and procedures to help sort my back issues which haven't really helped that much. I have had to come off all the prescribed medications because of the awful side effects they caused but at least I now know who I am and can think better 😃😃 I have been taking turmeric golden paste since last year but have recently increased my dose up to 1 teaspoon 4 times a day (you do need to start slowly to get your system adjusted to the detox process), take coconut oil, 1500 glucosamine and rose hip daily. I can now walk up to 6 minutes outside once a day without my back going into spasm or having really bad delayed reactions. I started at 30 seconds per day and try to add 30 seconds each week. I also walk in the pool and swim three times a week, only backstroke and floating exercises to keep the spine straight and some leg exercises. I started at just 2 lengths and aim to increase by 2 lengths every couple of weeks if I can, now up to 12 lengths which I am proud of and walking 6-8 widths too. I do lots of little exercises sitting on a chair and laying on bed. I do have a few that are standing but these are harder for me but I still do them. I have learnt some deep breathing techniques, ensure I rest and relax every day and now learning some distraction techniques. None of this will set the world on fire but I feel so much better for being in control of what I can do and being able to do little things every day rather than doing lots in one day and then totally wrecked for the next few. I still get very frustrated at times but I guess that's normal after having work and the active part of my life taken away. PMA = Positive Mental Attitude is so difficult at times but I am getting back to thinking like this. Also very lucky to have a partner who has looked after me, motivated me and helped me in every way possible to get where I am today. I wish you the very best in all you do and if you find the answer I would be very interested to know 😃😃

gamesamui in reply to Taliswood

Hello, your situation sounds so similar to mine, getting used to pacing after being active is so hard, I was a self employed tree surgeon for 12 years, now not much apart from pets and trying new hopefull medications, natural or not.

Does your turmeric and other supplements make a noticeable difference? I may try it, tried everything else! Thanks,

Taliswood in reply to gamesamui

Hi gamesamui

Somehow when you find someone with a similar situation you do get a little bit of comfort knowing you are not the only one in this life of pain 😃. I know I have read posts that I could have written myself, there are a lot of about we are just invisible to the eye!

Anyway, I do really believe in the turmeric golden paste, it doesn't make me pain free because I have a lot of spinal and muscle issues but for me it really does help. A dose only stays in the body a few hours so you do need to take regularly throught the day.

Have a look at this website it is run by Dr Doug English an amazing Australian vet where you will find loads of info. They also have a TUG Facebook group (Turmeric User Group) which I find better than the English one as I feel he and his team have far more knowledge and experience about treating animals and people. Ask to join, the link is on the website and read about some of the amazing stories for a host of different illnesses and see if you think it could help you.

I have now increased my dose again to 1 and 1/2 teaspoons of the paste 4 times a day. The thing I love about it is it doesn't give me any side effects and doesn't damage my organs like the meds I was taking. It can give you a runny tummy if you take too much too soon!! Please be careful if you start searching on the internet there are a lot of turmeric capsules which are 90 odd % curcumin which are not good for your organs if taken long term. It is must better and cheaper to make your own. The turmeric I am using at present has 4% curcumin, anything between 2.5 and 5% is supposed to be good enough to do the job.

Cheap turmeric can be full of fillers and so I always buy a good quality make and the same with the coconut oil, do not buy cheap refined stuff. Happy to give you more info and help in any way as once you get reading it can get a bit complicated. The recipe to make the paste is in the link above too. Works out about £4 to £5 for a big jam jar size which lasts quite a while especially when you are first starting off. The other stuff I take for my knees as I really need a knee replacement 😃😃

Happy for you to PM me if you want any more info so as not to take over this post.

Taliswood in reply to Taliswood

Oh forgot to say please check out if Turmeric has any contraindications with any medications you are taking, there is info on the webpage I gave above. 😃

Acaana in reply to Taliswood

Some people use tumeric, but I don't at all actually unless for magical means. I do however use Chamomile, Feverfew, Valerian and St. John's Wort. I use them alongside the pharmaceuticals and I find they help hugely. Thankfully these I grow, so I don't have to buy them.

I have learned since I have wrote this piece from my specialist here in Ontario, that much of my pain may have indeed be from Fibromyalgia. I learned just a few days before seeing him that it runs in my family making it even greater for me to have. I am waiting for a call from a Rheumatologist that my doctor said he would refer me to, to begin whatever examination and tests that need to be done. I am also getting an MRI of the brain to rule out MS since much of my symptoms indicate MS or an MS type condition.

Even though I know that some of my pain and discomfort comes from my neck and it refers down into my shoulders, arms, hands and fingers, and that I have accepted this truth, I always knew there was something more.

If you haven't tried herbals and you think about giving them a chance, just know that some of them taste really bad.

I hope you find some relief in your day. Thanks for writing. :)

Have you tried the Fibromyalgia forum on this site (health unlocked )? It's amongst the communities at the top of the page. You may find some answers to questions you have re Fibro. We all have it on the forum. Most of us with other medical delights too. Why not pop in for a visit to see if it will help. 🐸

Acaana in reply to Sorebones

I have not yet been diagnosed with it. It is one of the things I am going to discuss with the specialist next week, along with MS. Fibrobylagia runs in my family and nearly everything I am experiencing with the nerves either brings me to it or MS or both. My nerves are healthy, but there is no definitive test for nerve endings or nerve sheaths. MRI can see nerve endings. I don't know if it can see the nerve sheaths. I do know in one test, it picked up damage to one of the nerve endings. I have many questions and I don't always ask them when I see him. I had my massage therapist write down the muscle areas that stretch high into the neck that hurt so much for me. I will come back here next week with what he decides. I am hoping he will refer me to a Rheumatologist. Thanks for the advice. I will look it up. Sometimes I think, we as pain sufferers know more and sometimes we look up too much and end up scaring ourselves. Have a great day. :)

Sorebones in reply to Acaana

I agree! There are so many people who have suffered for years before a diagnosis. A diagnosis doesn't change what we go through, but it proves its 'not all in my head' things. My mums reply to that when I said that to her was 'that's some imagination you have then' lol.

I'm having horrendous nerve pain in my leg, probably sciatica, but because I have Joint Hypermobility my movement appears almost normal to Drs. But for me it is very restricted.

Good luck with your rheumy appointment. I hope you get an answer soon. Limbo is not a good place to be 🐸

Acaana in reply to Sorebones

I am waiting to hear from a Rheumatologist that my specialist is referring me to. After showing him a little note my massage therapist created for me that marked some of my trigger pain points that she has found and that I revealed Fibro runs in my family, that he agreed to help me with this. He is referring me to a Fibro pain clinic as well. In addition he is also referring me to get an MRI of the brain since the majority of my symptoms also appear to be MS or an MS like condition and we need to rule this in or out.

Even though I know that most of my pain and discomfort that I still feel after nearly 2 years being with a physiotherapist and using pain meds and about a year with my massage therapist, I always knew there was something more than an aging cervical spine.

What I have also learned that from my meditations, and work with these trained ladies (physio, massage) and from my meds and taking my own grown herbals, that I have shrunk some of the stenosis and that my nerve passageways are healthy. We do know there is a blockage somewhere, and hopefully that will get revealed sometime soon.

I also need to talk to my family doctor here about my CP. I have the Little's Disease which is a form of CP and in the last 12 months it has become worse. When I was younger I was more able to manage it, but now it is getting difficult. I am thankful I can still walk, but I need to be seen and possibly use a walking stick or something that will help me stay on track as I tend to stagger in my walk and lose my balance often. I know it would make my children feel safer, knowing mom is safe and not swerving herself into traffic. I hope I never have to use one of those driving carts or a wheel chair. But if it ever comes to that, I will deal with it then.

In the meantime, with all my pain I need to find employment when it is so difficult in the town we live and I don't drive so I cannot extend my job search outside of the city. I try to maintain a positive mind each day and not allow myself to become lost in every wave of pain that I feel. If I allow myself to become lost in my pain, then that low energy will effect the harmony of my home and I don't want that.

Thank you for your support. You are wonderful. :)

As you're into herbs etc, you might be interested in Turmeric. There's a Facebook group called the 'Turmeric User Group' with around 70,000 members worldwide. I have seen posts from people with fibro and they seem to get very good results. The Facebook page was set up by Doug English, an Aussie vet and there's also a website Not all Turmeric is created equal, but if you go and take a good look, there's heaps of advice. The general rule is to use an organic Turmeric from a reputable source, that contain 3-5% Curcumin. It's anti-inflammatory and gives pain relief, sometimes with amazing results. Join the Facebook page and you'll learn a lot. Also on the website is a list of medications that may be contraindicated.

Thank you. I have used tumeric for more magical ways. I do not like groups much. I only belong to a mere handful including my own. Thanks also for the link. I will surely look into it.

I have not been diagnosed with Fibro yet. As in a previous reply, I am asking my neurologist next week to refer me to a Rheumatologist, and discuss with him during my visit regarding my EMG results what he thinks and other things.

I appreciate your reply. Have a nice day. :)


Yes, I know about constant pain I have better days, Arthritis, Joint pain, bursitis and sciatic problems. I have had steroid shots but only can have 3 a year. Have had a left hip implant and my back is in worst pain than ever. So I feel for you, just like a couple days in a row with out no pain. I have 9 Grandchildren two 5 year olds and would like to play more with them, do my housework better and gardening. Cannot afford to retire, too many bills and help raising Grandchildren. Take Care, Will keep you in my prayers.

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