I didn’t realise that people actually wanted to know more about my chronic pain journey. Some weeks I’m not so vocal about my pain, other weeks I like to complain a lot. I thought it might be useful to share my chronic pain journey with all the clinics I’ve been to, the 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, so hopefully, this might be of some use to you.
How Did My Chronic Pain Journey Start?
Chronic pain is pain that has been consistent for 3 months or longer. I was in 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, which meant that when I could have been relaxed with my friend, I was tensed up and tensed further on impact to protect the drinks from flying everywhere.
Just afterward we offered to help one of the cars behind us push his car around a corner, in hindsight, this was the stupidest thing I could have done. It wasn’t long after that I started to feel the effects of what had happened, sore, and 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 taken on. I couldn’t work for long hours, I couldn’t stand for long, lift things, or move my right arm much in general.
Went to sleep at 11, woke up at 10, had a 3 hour nap today and I could easily go to bed right now. Yay for chronic pain!
— She Might Be Loved (@GeorginaGrogan_) August 7, 2015
The Claim Route
As we were claiming for my friend’s 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 of 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 would 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 that I’d be fully recovered in two years and that was his first assessment.
Intense massages aren’t always recommended for an injury. After one session where the physiotherapist massaged further down my shoulder blade than usual, 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 can still only get a few more.
It’s nothing close to what you actually need for a serious injury. 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.
The same private doctor confirmed that there was definite whiplash in my MRI report. 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. Little did I know my chronic pain journey was just starting.
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 help 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. You can ask to see another doctor, you can say no to seeing one that ignores you, keep trying until you find the right one.
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 of 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 recommendations from other people with chronic illnesses.
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. I’ve found that unless you actually point-blank ask, what’s next, who can I see now, who can help me more, they won’t just tell you.
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 by my GP in 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 practice 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. My chronic pain journey continued.
Pain specialist appointment in 20 minutes and I cannot wait to internally scream when she mentions ‘mindfulness’
— She Might Be Loved (@GeorginaGrogan_) February 2, 2016
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 highly recommended Sheffield Osteopath in December 2015. He was amazing, he explained exactly what was going on with the muscles in my neck. 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 to my house 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. Not once did my first Osteopath belittle me or my condition and back then, I wasn’t even close to a proper diagnosis.
What medication was I on? Paracetamol, Naproxen, and Gabapentin. Numerous people confirmed that it is muscle and nerve damage, so we started on the medication for nerves too. Eventually moving to Pregabalin.
Osteopath says my muscles are moving more and more every week 🙌🏼🙌🏼 pain levels aren’t going anywhere anytime soon but I can move more!
— She Might Be Loved (@GeorginaGrogan_) December 21, 2015
Rheumatologist
On my chronic pain journey, it was so heavily suggested to have more blood tests. So I insisted on more from my GP and further tests in general. This leads to us finding out that my inflammation levels were double what they should be. After a retest, they were triple. This leads 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 obviously 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 and have helped a lot.
I can’t nap because I need to be flat out if I’ve gotta sleep with this on. 🙃 Mission ‘stay away’ is a go. pic.twitter.com/1vUJi5p5sH
— She Might Be Loved (@GeorginaGrogan_) July 27, 2016
Musculoskeletal Physiotherapy
The Rheumatologist 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 acknowledges 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 of hours later it wore off. Normally it doesn’t wear off until the next day!
For this reason, I ended up buying a hot tub. Unfortunately, she couldn’t really do anything else after that, 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.
Depression
Between the hydrotherapy and chronic fatigue unit, I had been back to see my doctor numerous times. I experienced my first back spasm and to say it was traumatic is an understatement. I was screaming for help, crying and screaming at the top of my lungs in pain. We only didn’t call an ambulance because I was in the middle of washing my hair, so I was naked over the bath with red hair dye dripping all down me. We did eventually go to A&E because my legs had extreme pains down them and I was really concerned. After 4 hours, A&E called it a ‘moderate back spasm’ and could only offer me co-codamol. It was after this that I went on to try tramadol.
The main reason I went to see my GP more was to finally ask for help with my depression. I’ve had depression probably most of my teens and adult life but I’ve never wanted to ask for help. I’ve never had a decent GP to talk to and before my car accident, I rarely ever went to the doctors at all. My doctor was incredible when I brought it up, it wasn’t hard to do, and if I remember right I actually said, ‘I think I finally need some help with my depression.’ We had talked about it a lot before, mainly when I was nearly crying at the frustration of chronic pain, so it wasn’t a big shock to her and it wasn’t out of the blue. My GP has put me on a low dose of Citalopram and I can honestly say that it has really helped. Well, that and getting my cats.
What medication was I on? Paracetamol, Naproxen, Duloxetine, Citalopram, and Tramadol.
Chronic Fatigue Unit
To be referred to The Chronic Fatigue you need a new set of blood tests, a negative sleep apnoea test and a BMI that they approve of. I nearly wasn’t allowed to be referred due to being fat. The Chronic Fatigue Unit starts off on the phone, talking about your condition, accessing you with a test, and deciding if they think you have chronic fatigue syndrome (CFS/ME for short) or not. The woman had no doubts and to be honest, everything made sense to me too. After the phone appointment and they confirm you have CFS/ME, you’re invited to a group session.
The group session is where someone talks to you in an extremely dark room, with an extremely quiet voice. This is because one of the symptoms of CFS/ME is light, sound, and touch sensitivity. This is one of the symptoms that really stood out for me as any weight touches on my body, can feel 100x heavier and harder than they actually are. They’re very thoughtful at the group session, they have padded mats if you need to lay down or sit on the floor, refreshments, and an answer session at the end. For me, it was basically just talking about everything to do with chronic fatigue syndrome, which obviously I had already read up on. I imagine most people do as soon as they’re diagnosed or even think they have it.
The sessions basically just went through getting other people to understand and it was recommended to take someone close to you who isn’t being great about your condition. As it was during the day, the men in my life couldn’t attend so it was my mum instead. My mum is great about my condition, she has health problems too so we both understand each other. The meetings weren’t really useful for me if I’m honest, having to get ready and go to the other side of town in very expensive taxis, sit in a dark room that made me want to sleep, on chairs that made me want to scream in pain, wasn’t my idea of getting help. They do tell you, during every one of the 4 breaks, that if you’re in too much pain or too fatigued that you can leave. So we did leave early, every meeting. Making it extra pointless. The information was stuff you could find online and they didn’t really tell me anything useless, like how to live.
I really wanted to know if I should be letting myself sleep so much or not, what medications do other people with CFS/ME use, do they help them, I had so many questions that never seem to come up. Just how chronic fatigue works and how we need to find a balance of not overexerting ourselves but at the same time, we shouldn’t not do anything at all. Again that doesn’t really apply for me as I can work from home and have a balance here, but add in an event or going out and I’m overdoing it. There’s no way about it. It was recommended to keep a pain diary but because of my depression and chronic pain, I’ve been told numerous times I shouldn’t as it wouldn’t be good to focus on it for my mental health.
I’m sure that if you could take someone who completely doesn’t understand CFS/ME then the sessions would be helpful, but I’ve not really got anything out of it. Except for expensive taxi receipts and a lot of extra pain.
After you finish the group sessions you are then asked if you would like any further help and there are so many places you can go from there, if you haven’t been there already. Some of these include CBT Therapy, Activity Management, and you can be referred to the Pain Management Clinic.
I had a psych evaluation for CBT Therapy, and I was classed as having moderate to severe depression, and anxiety. I waited over 6 months to have my first CBT Therapy session (which you can have via the phone) and I ended up turning it down. I had completely forgotten I was even waiting and explained to the woman that talking about my pain wouldn’t help me at all. I told her I didn’t find CFS/ME Services helpful and they put me on a 6-month period where I could change my mind or be discharged.
What medication was I on? Paracetamol, Naproxen, Duloxetine, Citalopram, and Tramadol.
Getting a Wheelchair
My GP and I filled out a form for Wheelchair Services to get me assessed and properly measured for a chair. It was becoming extremely difficult for me to get out and so this was the best way forward with my mobility. My wheelchair came in April 2018 and it took me until September to actually use it. Since then I’ve gotten much more used to it, I even took my transit chair on holiday and had the best time ever. Now I have Goldie, my electric wheelchair, or a powerchair. I’m actually excited to go out now and have been able to go and do things I didn’t think would be on the tables anymore. I highly recommend talking and pushing for a mobility aid if one would help you.
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. Right now I don’t think there’s anywhere else I can be referred to and although this isn’t the end of my chronic pain journey, I do feel a little bit of a lost cause.