My Chronic Pain Journey

I didn’t realise that people actually wanted to know more about my chronic pain, not until I ran an anonymous survey about my blog and its content, (if you’d like to leave me some feedback, you can do so by clicking HERE). Some weeks I’m not so vocal about my pain, other weeks I like to complain a lot. I even created a private Twitter so I can moan away without annoying people. I thought it might be useful to share my chronic pain journey with all the clinics I’ve been too, help I’ve got from the NHS, medications that have been recommended to me, and anything else that could potentially help others. Everyone’s pain is different, but you can always make suggestions to your doctor on what medication you’d like to try and ask about further help.

Chronic Pain

How Did My Chronic Pain Start? 

Chronic pain is pain that has been consistent for 3 months or longer. I was in an a car accident in July 2014, where a car came speeding along and hit one car, which hit the one in front, that then hit the car in front of it, and finally shuttled us forward quite a distance. At the time I was holding drinks as we had just been to get a takeaway, which meant that when I could have been relaxed with my friend, I was tensed up and tensed further on impact. Just afterwards we offered to help one of the cars behind us push his car round a corner, in hindsight, this was the most stupid thing I could have done. It wasn’t long after that I started to feeling the affects of what had happened, sore, achy, and I found it incredibly hard to stay awake. At the time I was working in retail and I needed to seriously cut back on any overtime I had been given or took on. I couldn’t work for long hours, I couldn’t stand for long, lift things, or move my right arm much in general.

The Claim Route

As we were claiming for my friends car and our (at the time) whiplash, we had to go down a set route that again in hindsight, I would have held off. Obviously this was a couple years ago, I had no idea how long my aches would last, or that it would be something actually serious. It wasn’t until a few months down the line that we started seeing a private physiotherapist through the insurance company, that I realised I wasn’t actually improving at all. Whereas my friend who was driving, was nearly back to his normal self. It was here that they’d recommend a hot and cold routine, massage balls, exercises, and every session we had extremely intense sports massages. A few weeks/months later we had to see a very old, rude, dismissive private doctor who knows everyone claims for every little bash. He told me I’d be fully recovered in two years and that was his first assessment.

Intense massages aren’t always recommended and after one session where the physiotherapist massaged further down my shoulder blade than usual, that my back pain started and has never ceased since. You’re given only so many sessions of physio when you’re claiming for an accident like mine, even though the physios wrote to the company to say I needed a lot more and I was getting worse, not better, you still have a limit. I was sent for an MRI scan on my neck and shoulder, but by this time my back pain was so severe that I was in complete agony laying in the MRI machine. There was nothing they could do as an MRI is like a prescription, they can only scan what they’ve been told and as it was requested whilst the pain was still just in my neck and shoulders, I never got any attention for my back from the insurance company at all. The same private doctor confirmed that there it was definite whiplash in my MRI report. I tried to tell the solicitors that my pain has got worse, I was sat on the floor, unable to clean up and therefore crying when they rang to tell me we were in the final stages. I told them I wasn’t interested in more money, I simply wanted to be seen privately by someone as it was a lot faster (I had already started going to my GP at the time and was getting no where.) It wasn’t possible, nothing could be done over my back and they ‘couldn’t see how they were connected’. In other words they didn’t want more work when it was all nearly over. I had no fight in me, I had already been off sick for one month at this time, I was sleeping constantly, and the pain was so intense.

I ended up settling on my shoulder, taking the money, and obviously using it to reimburse myself on all the things I had already bought and extra things I had to do for my pain. Chronic pain/being disabled is seriously expensive. Now I was in the care of my GP, having to explain myself constantly and I was signed off for a second month by the GP, before finally quitting to be a full time freelancer.

What medication was I on? Paracetamol and Naproxen. They helped a little but I hate taking tablets so I was never consistent.

Seeing Your GP For Chronic Pain

One word, exhausting. Completely and utterly exhausting. It has taken me 3 years to find a doctor that actually acknowledges chronic pain. I have been told I am ‘too well presented to be in this much pain’, that doctor is lucky I’m not a violent person. In the beginning you end up repeating yourself a lot, constantly, I really do recommend writing stuff down, keeping a pain journey, and a note of everything you need to tell them. Where the pain is, what makes it worse, any tingles (very important), and keep a diary of your activity levels, if it improves when you do more or less etc. This will also helped if you are referred to other places as you have to repeat your full story constantly. If I’m honest, you need to find a good GP as soon as possible, your GP is how you get your medication and how you get referred for more help.

I started off seeing the GP physio, she wanted me to lay on a table, raise my hips, and was shocked when I told her the pain was still there when doing this. In other words, she wasn’t very good and didn’t really seem to believe my pain levels. After a couple sessions, and me constantly telling her nothing was helping, I was referred elsewhere. I have had to really push for every single medication and referral, 90% of the things I’ve had, and been to, has been because of my incredible friend, Faith, and her recommendations. Of course I’ve also read as much as I possibly could and took on board everyone’s suggestions to ask the next specialist I was seeing.

Pain Management Clinic

This is a strange place that does many things, but then it eventually spits you out when you’ve had everything from them. I was referred here from my GP late 2014. The woman I saw there was lovely, we mostly talked, she wanted me to ‘accept’ that I have chronic pain now, know that I may never be without pain again, and practise mindfulness. She was really funny and down to earth to talk to, she let me make jokes, complain, and I point blank said how patronising I find mindfulness. I saw her every couple of months and nothing really happened other than her showing me resources for ‘managing’ and eventually I asked for more. In February 2016 I was finally having my first Acupuncture session. You’re only allowed 3 sessions so 3 weeks later and it was all over. I was really tired after Acupuncture but that was probably just feeling tired from getting ready and leaving the house. I didn’t really notice much of a difference at all and my overall experience with the pain management clinic wasn’t very useful for me. It was great having someone to talk to, but that’s about it.

Seeking Private Health, The Osteopath

I was having to wait too long in between appointments and nothing was really happening, so I went for some outside help from a recommend Sheffield Osteopath in December 2015. He was amazing, he explained exactly what was going on with my muscles in my neck, and he’s the reason I can actually turn my neck now, as for a long time that wasn’t possible without intense pain. He deeply massaged set areas, and every single session I walked away being able to move a little bit more. The pain levels didn’t really change, but I could definitely move more. Eventually the sessions turned to just doing gentle movements rather than hands on, and he said that I should probably have more tests and there was nothing more he could really do for me that would be worth the money every few weeks. I mean, you’ve got to appreciate the honesty! I actually tried to go to an Osteopath that was closer so it cost less in taxis, but she just felt my back for 40 minutes whilst telling me that pain is all in my head, and didn’t believe in chronic pain. Needless to say I didn’t go back. I’d actually recommend ringing around first and asking how they go about treating chronic pain, as that was a total waste of £50.

What medication was I on? Paracetamol, Naproxen, and Gabapentin. Numerous people confirmed that it is muscle and nerve damaged, so we started on the medication for nerves too. Eventually moving to Pregabalin. 

Rheumatologist

After it being heavily suggested, I insisted on more blood tests and further tests in general which lead to us finding out that my inflammation levels were double what they should be. After a retest, they were triple. This lead to a referral to Rheumatology in April 2016, and a very long wait to actually see one. When the appointment eventually came up in July, it was truly fantastic. The Doctor was incredible, answered every single question I had and told me it’s either something very serious, or it’s chronic pain, still very serious and very chronic. He listened, read my notes, examined me, and then sent me for further blood tests, x-rays, Sleep Apnea test and another MRI scan. Thankfully everything came back under the levels they needed to be to continue with him and the Rheumatologist wrote a complete diagnosis and explanation of ‘chronic spinal pain’ in his letter to me, discharged me from their care, and gave me further suggestions on where I could go next and what new medications I could try. The letter took over 7 weeks to come, so that wasn’t fun, but the suggestions were great.

Musculoskeletal Physiotherapy

The physiotherapist told me in his letter that he could refer me to this unit, to be honest I was really struggling so it did take me a while to eventually ring up for the referral, and then even longer to actually get an appointment. I finally got the appointment in January 2017 and the woman was truly fantastic. She listened to everything, she wrote everything down, she completely and utterly acknowledge my chronic pain, all the places and things I’ve tried, and my frustrations. I left that appointment feeling like I would finally get some help, she again answered all my questions and I was incredibly pleased when she said we’d be doing Hydrotherapy together. I had 5 very happy sessions of Hydrotherapy with her, every week she helped me with medication suggestions, movements, and was generally just one of the nicest people to see. Hydrotherapy made me incredibly tired, from going out and moving, but it felt amazing whilst I was there. I used to get days where my arms would go completely numb, they’re now thankfully rarer and rarer, but I did have a numb arm on the day of an appointment. After moving it around in warm water for an hour and doing gentle movements, a couple hours later it wore off. Normally it doesn’t wear off until the next day! Unfortunately she couldn’t really do anything else after than as there wasn’t anything else she could refer me to, so I was sent back to the GP. My last session was in April and since then I have been back to the GP and found a nice doctor who listens, suggests, and believes me. She’s actually really lovely and although it’s extremely difficult to get hold of her, we have our next steps planned.

What medication was I on? Paracetamol, Naproxen, and Duloxetine. Again these helped at first but eventually they didn’t help much.

Chronic Fatigue Unit

I am currently waiting for my blood tests to be sent to the Chronic Fatigue Unit, who could refuse me completely because of my weight. I could do a whole different post on the struggles I’ve faced with chronic pain and being fat though, so I won’t go into it now. They need another full blood count as my first one came back with an odd result, and they need my sleep apnea results which show that I don’t have that. I don’t know how much they can do for me, but the journey continues!

 

I’ve actually not taken my tablets for a couple weeks now, I was in a real depressive spell and taking tablets 3 times a day was just making me mentally feel worse. I know that’s not good, and I should start taking them again, and I will now that I’m mentally in a better place and hopefully staying here for longer. Chronic pain and depression are obviously close neighbours, it’s incredibly hard to stay positive whilst your body seems to be working against you. I haven’t been fully independent since the accident happened, and I’m finding I need more and more help with the simplest of things. Thankfully my wonderful mum and Alfie are keeping me fed, clothed, and Alfie even helps wash my hair, or I imagine I’d look and feel a lot worse!

Some of you may be wondering what WILL actually help me, and to be honest, I really don’t know. I know it’s not just one thing on its own, it’s going to be a combination of treatments and medications, but the difficult part is finding out which combinations.

What else do you want to know about chronic pain or read more about? Let me know in the comments!

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  • You have been through such a lot GG. It’s actually made me feel so frustrated for you, reading it all there in black and white.

    I’m so, so happy that you’re not giving up. I know it’s cliche and rubbish, but do stay positive when you can. It might never go, but we can learn to manage it better. You do brilliantly to keep on working and getting things done. Just open yourself to more help – I know that is really tough to do, but it makes a huge difference.

    I know I keep telling you to talk to someone about PiP, and to speak to the GP about looking at mobility aids, but I’m gonna say it one more time (haha) – DO IT. You’ll be absolutely astonished by how much it can help. I promise you.

    Keep at it gal. You got this. Love you xxxx

  • Thank you so much for writing this and sharing your experiences! It’s extremely hard being chronically ill but the worst of it has to be when even the professionals don’t believe you. I’m sorry you had that experience with the osteopath but at least you found a good rheumatologist! Hydro really helped me too a few years back, but it does take it out of you afterwards. I honestly didn’t even know there was such a thing as a chronic fatigue unit; my nurse has asked me to ask about a pain management clinic, so I’ll definitely be asking about that too.

    It sucks being ill, but I find posts like this so helpful so we can all share experiences and what’s worked and what hasn’t!

  • Alexis Towle

    I can empathize with you although I don’t have chronic pain. I had a severe concussion and the symptoms didn’t really hit me until 2 months later. I had post concussion syndrome and it made every aspect of work impossible and impacted my relationships. I’m 1.5 years into recovery and it could take up to 4 years to completely heal.

    Really enjoyed your post and good luck with your recovery.

    Alexis||https://lidsandtricks.com/

  • I have several chronic illnesses that involve chronic pain and I’m soooo sorry that I can relate, but unfortunately, I do. One thing that really resonated with me was one of the last things you said–how depression and chronic pain go together so easily. It’s so true and so devastating. If I didn’t have some sort of support system (however small), a good doctor, and medication (screw the people who shame me), then I don’t know how I’d cope. It’s also hard to find what works for you with chronic pain. I’ve lived with it for years and years now and I still haven’t found anything that really, truly eases it completely. But like you said, trying to figure out the right combination is tough. Also–being fat and in chronic pain is a whole thing in itself…! Sorry for the long comment. I’d love to talk to you about all of this some time if you want! Or to just read another post. Hope you find some relief and some answers soon xx

  • I am a hypnotherapist and am hearing really good things about this http://oldpain2go.com/
    No vested interest although I am thinking about training in the technique. Certainly worth ringing to see if you might be a suitable candidate

  • I have a genetic illness called Ehler’s Danlos Syndrome, which has chronic pain and joint dislocations as two of its many symptoms. It took me about 5 years from the first time I told a doctor I was experiencing joint dislocation on a daily basis to getting diagnosed. I completely sympathize with the gaslighting that the medical community does with chronic pain patients and how that increases with your weight. I am overweight and the number one recommendation was to lose weight and somehow it would magically fix issues with my hip falling out of place. I hope that the medical community improves in their treatment of chronic pain patients. There are so many that stop at the first diagnosis and accept that and then get far far worse. If I didn’t have a proper diagnosis, I’d shudder to think where I would be at today. I still fight with doctors over pain management and other things. It’s a tough world for those with chronic pain. I hope things improve for you and your care is better managed.

  • Jo Stephens

    I can relate to your pain, I have suffered with chronic pain in my joints since I was 13 and am still waiting on a diagnosis but they’re leaning towards FM right now. I have had to fight so many doctors over the years that have told me that my symptoms are purely caused by my weight and it’s so frustrating. It’s really lovely to hear from someone describe the journey and I’m sure many people will find it really helpful.

    http://www.plumpandpeculiar.com

  • Thankyou for sharing this post 🙂 There were so many things that you wrote that were relatable for me during the time I was trying to get my diagnosis of fibromyalgia. I went to the GP, to a pain specialist to told me I had fibromyalgia, then to a rheumatologist who was wonderful and confirmed my diagnosis of fibromyalgia, but he told me that there was nothing he could do. I was then referred to a pain management clinic, which I found very unhelpful. They gave me exercises and physio moves to complete at home but some of them just make my pain worse and make it so that I can’t move a particular body part much for days 🙁 They told me that they understood that I needed very strong pain meds but said because of my age, they couldn’t give me any as over time, your body needs more for it to have an effect and there would be a time when I would reach the safe limit, so they prefer to give these meds to older patients. My GP has given me gabapentin (which hasn’t really done anything yet), and I’ve been given basically no other help.

    I understand how you feel about your meds, when I’m having a hard time with my depression, I stop taking my meds too even though I know that I shouldn’t >.< I hope that you find a good combination of meds and treatments that work for you, and that you get some relief for your pain – Sarah x