Dealing with chronic pain
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Chronic Back Pain and I'm ''running out of options''

Miss406Miss406 Member Posts: 11 Listener
I suffer with Fibromyalgia, CFS, Asthma, Raynauds, anaemia and chronic headaches.

I am awaiting diagnosis for possible liver failure, Stage 2 Chronic Kidney Disease and PoTS (postural Tachycardia Syndrome).
I am also awaiting an appointment for orthopaedics in relation to back pain I've suffered for nearly a year and gained 5-6 stone.
I have to use a mobility scooter to go shopping but can manage around the flat just about okay, but I cannot stand for longer than 3-5 minutes because of back pain. I get dizzy a lot and have fainted without reason 3 times in these 12 months.

I am a very complex case and I have had back pain now for over 12 months. I had blood tests in November & December 2020, as well as May 2021 and each have come back indicating I have some mild liver failure and Stage 2 CKD. However, the doctor hasn't actually mentioned this to me - I've had to read it for myself on the blood test notes, which if I hadn't of requested - I wouldn't know anything about. In the notes it reads 'If kidney injury is ruled out, this result is consistent with Stage G2 CKD.' 

Now - Onto my back pain. 

I can stand and walk for approximately 3-5 minutes and then the pain hits. It gets that bad that the only thing that eases it is to either bend over a wall, table etc or to sit down. Even then I get a huge rush of pain relief which sometimes makes me lightheaded, dizzy and breathless when I sit down and the pain eases off gently. 

I have spoken to the doctor several times, I've tried so many different tablets, tramadol, amytripyline, naproxen, nefopam, diazepam, diclofenac and NOTHING has even touched the pain slightly. I spoke again to the doctor to day and he has now referred me to a pain clinic (eventually) and has now given me gabapentin to try (again). 

The doctors words were 'we are running out of options' and I am still waiting for an orthopedics appointment at a hospital. I've tried months of physio, I've tried heat therapy, I've tried a tens machine, I've tried all sorts of different exercises and STILL I am in SO much pain I wake up each day hoping it's my last. 

If we have a pet in pain, we end their suffering. This condition and pain is affecting my life quality and I constantly feel like I don't want to be here, suffering this level of pain. I have given birth with NO pain relief and honestly, compared to this - it wasn't bad at ALL. 

Any help most appreciated, the pain is in my LOWER back and very much like a tight cramping pain. It honestly feels like my back is breaking. 
Fibromyalgia, CFS, Raynauds, Chronic Anaemia & Headaches. Possible PoTS. Unbearable back ache. 

Replies

  • chiariedschiarieds Community Co-Production Group Posts: 9,162 Disability Gamechanger
    edited June 16
    Hi @Miss406 - I've commented on your introductory post with some suggestions which I hope may be helpful. The answer is not often solely with prescribed meds (& I've tried many too), but often a combination of things work. As you appreciate losing weight will be helpful as this will reduce the stress on your joints when weight bearing.
    The only other thing I've found helpful is cannabidiol (CBD) drops. Whilst hoping it would lessen some of my other considered worse pain, it does alleviate my lower back pain, which I hadn't expected. Now there are many CBDs you can buy; some better than others. If you're interested in trying this, I can point you in the right direction as to where to buy CBD from a reputable source, & how to begin taking this. If interested. please say, & I would be happy to help. I've been taking CBD for nearly 3 years, & researched it well before trying.
  • Miss406Miss406 Member Posts: 11 Listener
    Thank you @chiarieds, I have done very brief research into CBD. It sounds great and I hear a lot of stories about how well it's helped some people but, how can I afford it? I am on Universal Credit & PIP. For PIP they've only given me standard rate care, despite ALL my issues. I have put in a MR and that was also turned down. I am awaiting a tribunal date but until then - money is VERY limited and I either pay for food, or CBD oil one week. It really is as simple as that for me. Funds are that tight. 
    Fibromyalgia, CFS, Raynauds, Chronic Anaemia & Headaches. Possible PoTS. Unbearable back ache. 
  • chiariedschiarieds Community Co-Production Group Posts: 9,162 Disability Gamechanger
    Hi @Miss406 - the CBD I take is £8.50 for 10ml & £22 for 30ml & £4.95 P & P. It depends how many drops you find works best for you; I take 4 drops 3 times a day & a 10ml bottle lasts me a month. If you tried & found it helps, then it's still the P & P however many bottles you buy. This is very cheap for a quality product, so maybe something to try when funds allow.    
  • Miss406Miss406 Member Posts: 11 Listener
    Would you mind sharing which one you use? How quickly does it work? 
    All the CBD oils I’ve seen are around £30+. I’ve also considered CBD lolly pops / sweets. 

    I could stretch to £15 to try the 10ml. 

    Fibromyalgia, CFS, Raynauds, Chronic Anaemia & Headaches. Possible PoTS. Unbearable back ache. 
  • chiariedschiarieds Community Co-Production Group Posts: 9,162 Disability Gamechanger
    Hi @Miss406 - here's a link to the oil from this reputable & ethical company I use. This green oil is helpful for pain. Please see: https://www.simply-cbd.co.uk/products/green-cbd-oil?variant=37927970963639
    As everyone is different, I can't say how quickly it may help. Personally it helped me in 2-3 weeks, but it can take as long as 8 weeks. Would you mind telling me what medication you take? I ask because over 90% of prescribed meds are broken down by the same liver enzymes as CBD, so with these it's wise to leave a 4 hour gap between taking these & CBD. If you're only taking Gabapentin, no worries, as this isn't broken down in the liver. Some over the counter meds count too, but I can check for you & you can then verify with your pharmacist ideally, or GP.
    There's so much CBD offered at a high price, & with no indication as to how to best start taking it unfortunately. Anyway, please have a look at the CBD I mention, & if interested I would be pleased to tell you how to start taking this, etc.

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