Feeling Fed Up, Medical Advice and Chronic Pain

7501x

⚠️⚠️Warning - Essay!! You may require boredom or extreme patience and persistence to finish reading this one 🙃

Hi everyone, I’m so sorry for how long this is but I’m feeling so rubbish after recent interactions with different medical professionals and hoping for any words of wisdom and hopefully some answers to some questions I have if at all possible.

I’m 32, have struggled with pain since I was about 18. First started with a back pain flare up and subsequently a very delayed MRI showed a moderate lumbar disc bulge and one slightly smaller just above. I believe these have become smaller over time but are still present. Most recently L4-5 was noted as “abutting the left L5 nerve root but no compression” and L5-S1 “abutting left sided nerve root at the entrance into the neural canal”. Also a disc bulge at T9-10 indenting anterior theca “to the left midline” but not compressing the cord. Minor spondylitic change at C4-5 and C5-6. Also C4-5 mild left sided disc bulge but no narrowing, stenosis etc. Also diagnosed with Fibromyalgia and Chrinic Pain Syndrome. Currently my medication consists of; 30/500mg tablets x 8 per day | gabapentin 300mg tablets x 12 per day | Oramorph 60mls per day | Fentanyl slow release patch 25 micrograms per hour (plus non pain related Sertraline 150mg per day & promethazine 25mg x 1 per day). I’m allergic to anti-inflammatories and had an adverse reaction to Tranadol so can’t use that either. I use a TENS machine, massage balls, foam roller, heat, a shiatsu massager, therapeutic ultrasound machine, sleep with a long body pillow between my knees and to stop me rolling onto my front and have purchased a recliner sofa that adjusts in the normal way but also the headrest for my neck pain as I’m sometimes unable to support my head. In the past I’ve done physio so many times I’ve lost count (discharged due to no improvement) and hydrotherapy (told to stop due to worsening symptoms). I also sometimes experience the sensation that warm water is being poured down differing parts of my legs. I use a wheelchair when out for any significant period of time.

Saw the Pain Managament Clinic today for the first time. Ended up in tears. The nurse and consultant there, along with my GP are suddenly flapping about my medications and want me to instantly start to reduce them, with the aim of coming off them. Copious reasons mentioned some including “not wanting to end up like America with their opioid addiction crisis” “my long term health of organs etc” “opioids won’t be helping your pain you will be used to them” Generally speaking they help with my daily pain, and if I’ve ever taken slightly less I end up knowing about it. I’ve started over the last few months experiencing a new symptom which is waking up stuck in bed. Results in nearly having to phone an ambulance but by some miracle with major patience on my partners half we manage to get me out of bed but this takes around 30 - 40 minutes. Resorted to sleeping on the sofa but that’s now started to cause pain also. I sleep absolutely fine, it’s just when I wake up that I’m stuck in one position. I’ve also around the same time started experiencing numbness in my outer left thigh; GP diagnosed Meralgia paresthetica. No one has seemed concerned about it being related to my back. At my appointment today I begged for some sort of medication to take only in emergencies like this and was flat out told no. Ended up in tears as they can only offer therapies to hopefully help in the long term, so I just got really upset about there being nothing anyone can seem to suggest or offer to help me during severe flare ups (the bed situation is just one, I do have other flare ups). I will eventually get more appointments to go through their numerous therapies offered (god knows how long the waiting lists are) but no help can be given for these flare ups where I’m left unable to care for myself and essentially unable to move. Left the appointment today feeling totally deflated. Similar story with GP consultation recently. I feel like now it’s all (in the eyes of the professionals) going to be fixed by me slowly coming off all medication, going for a daily walk, and making sure my mental health is in good shape. Believe me if it was this easy I would have never ended up like I am. I battled for years to remain in my job (insurance so office based). 20 hours per week and spent most of my time off sick or in HR meetings because of being off sick do much. Eventually work life balance became too much, couldn’t manage both so had to leave my job (2 years ago). Again I’m made to feel by medical professionals that working will help to contribute to keeping my pain under control as well as staying active. Yet I can manage my pain so much more now I’m not working and having to deal with the stress physically of the pain working causes for me, and the psychological pressure of always being off sick, and pushing myself to work causing me to be good for nothing at home. At the time I would go for daily walks as recommended, did physio, took my meds, lost weight etc etc and still ended up unable to manage. Yet now I’m led to believe doing all of the above will keep me in work and with significantly less pain. The Pain Management Clinic want me to try taking Nefopam but I’ve scared myself reading medical research about overdoses one of whom was younger than I am, taking identical medications as I am but not all of them, and ended up sadly passing away 2 months after starting Nefopam. I obviously am very aware of the opioid risks too. I get to points where I feel so hopeless and just sit and cry in so much pain not knowing what will ever make this better or for me to be able to live a happy life. Just even waking up in the morning and being able to get myself to the toilet and managing toilet needs without help would be nice.

I guess I’m just hoping for any words of wisdom if any can be offered please 🤞🏻

Also I have a few questions if anyone has any answers for me please!

1. is Nefopam a bad idea? Dangerous?
2. Am I fighting a loosing battle with the NHS in trying to keep medications as they do help me? 
3. A lot of people have told me to take CBD products - I know in the group you may not be allowed to comment on this, but will my GP be able to offer advice or is this a no go area for them?
4. Can anyone offer advice on my MRI findings and what they mean/should they be causing me this much pain, stiffness and reduced mobility?
5. Should I be worried about the thigh numbness?

If anyone has made it this far - thank you!! I’m so sorry for how long this is; I’ve tried to compress 12 years here 🙈 I just feel really low about the whole thing and feel like all the medical professionals want from me is to go on walks, take less pain relief (eventually none) and to keep my mental health in check and this will be the end of all of my problems. I’m absolutely willing to try everything they offer, but I have done in the past and still ended up where I am. I just wish they could trust that I’m in so much pain and living their ideal lifestyle isn’t (in my opinion or experience) going to fix things 😢 

I will stop my huge essay here and thank you even more if you’ve reached here! I don’t wish to come across as being a professional or knowing the answers, I’m just going off my own experiences with my own circumstances and feeling super deflated and lost right now 😔 

chiarieds

Hi @7501x - I'm so sorry to read about all of your problems. I hope you will look at the following in the way that is meant; hoping to help. By way of explanation I suffer from daily chronic pain (I have the hypermobile type of Ehlers-Danlos Syndrome which has caused generalised osteoarthrosis &, in my case, neurological problems which can be associated with this syndrome) & am also a long-retired physio, so can see things from both sides of the fence.

I can see where you're coming from.....I also can't tolerate Non-steroidal anti-inflammatory drugs, nor Tramadol. I was also on Fentanyl patches for years (tho couldn't tolerate Oramorph either). This is from personal experience, knowing we're all different however.

I decided to very, very gradually wean myself off the Fentanyl patches, as I was moving house, & didn't think I'd be able to get the high dosage of Fentanyl I was on prescribed by a different GP surgery. Two things; I didn't think my pain was in the end any worse, & my new GP said that it was felt that long-term usage of opioids really didn't help with chronic pain. My later reading of medical papers confirmed this viewpoint, so I do also understand what your Pain Management clinic has said, tho not the thought that patients prescribed opioids become addicted, rather there can be dependence upon them.

It might be worth discussing with your GP as to whether you might do better on Pregabalin instead of Gabapentin (they are in the same 'family' of drugs). Personally I found I couldn't tolerate Gabapentin, as I found it too sedating, & have done better on Pregabalin. I also later read that Pregabalin is better absorbed by the body so can be taken at a lower dosage than Gabapentin whilst giving the same amount of relief for neuropathic pain. It consequently can have fewer side-effects.

1. I don't know about this drug, but we can't give medical advice, sorry. Again, I'd have a discussion about this with your GP & voice your concerns.

2. Try to be open-minded if you can to try alternative medication, & different things that may help.

3. I've been taking CBD oil for well over 4 years; again this is just personal experience but I have found CBD oil dampens down my lower back & joint pain, but unfortunately does nothing for my neuropathic pain which is my worst symptom. You should again seek the advice of your GP, tho a pharmacist may be better. Over 90% of presribed meds (but not Gabapentin or Pregabalin) are broken down in the same place in the liver as that where CBD is also broken down. Erring on the side of caution from my medical research, you can still take CBD, but it's advised to leave a 4 hour gap between most of these prescribed meds & CBD otherwise your meds may be ineffective, or you could get an accidental overdose. This is why you should discuss the meds you take with your GP/pharmacist before taking CBD (ask if they're broken down by cytochrome P450, which is the group of liver enzymes that metabolise both CBD & most prescribed meds).

4. In general, if there's no compression of the nerves as they leave the spinal cord & no narrowing of the spinal canal, then one would have hoped you wouldn't be in so much pain. It's not known why some people are found to have significant degenerative changes (most usually as we age) in the spine, & have little/no pain, whilst others like yourself suffer significantly.

5. Meralgia parasthetica usually clears up over time. It's usually caused by some compression of a nerve that supplies sensation towards the lateral part of your thigh. As you have disturbed sensation there, but no problems of a motor component, this shows it's unlikely to be anything to do with your back problems.

You might try having a look through these resources about chronic pain: https://forum.scope.org.uk/discussion/102784/resources-and-tips-for-those-living-with-chronic-pain

I use the deep breathing one (diaphragmatic breathing) daily. It not only helps reduce stress, which as we all know increases pain, but therefore pain itself.

I do use gentle exercise, but start small & build up very gradually. Increasing pain just worsens the vicious pain cycle, so don't 'push' through this; a little & often is far better. It's often found that a combination of things work the best in learning how to cope with chronic pain, so please do keep that 'open mind.'

We naturally move about during sleep. Could you try sleeping on your back with just one pillow under your head, & another under your knees if this feels more comfortable. I wonder if your body pillow is limiting your movement a tad too much resulting in increasing morning stiffness.

Kindly let us know how you get on.

Albus_Scope

Hi @7501x. I'm so sorry to hear of your struggles with getting doctors to listen to you. I can understand the frustration.  I agree that little and often seems to be the best way with constant pain.  I of course can't advise on anything medical or CBD related, but it could be worth speaking to your GP about it to get some more information from them, but Chiarieds has already given you some top advice there as well.  

agent_next_door

Hi.  This is all my own personal experiences and opinions... I was prescribed nefopam before being offered stronger opiates, and not only did I find it useless, but it gave me serious nosebleeds (and I only had 1 nosebleed in my entire life until that point). Obviously different people react differently.  Regarding pain itself, I kinda went backwards way on to you. I began at the pain management clinic, and it was very obvious to me they were only interested in suggesting warm baths, with a photocopied exercise sheet and tens machine. I left feeling insulted, an experience that I noticed many share.  I spent about a year really struggling, and being given a right pick N mix of weaker medications, but some of the side effects were horrific and it only gave me marginal benefit.  One day I happened to see a new doctor at the surgery, who by sheer chance also suffered with severe back pain.  That was years ago now, and she changed my entire treatment plan. while I was obviously super grateful, it's left me feeling disgusted that it took someone with a personal experience of pain, and/or a bit of sympathy to listen to me, and help. This is my own experience, and as some might potentially see at as bad medical advice, let me put it this way, if you are taking any antidepressants, read through all the known side effects carefully, and act accordingly. Obviously if you don't take any, or makes no difference. I was able to reduce my pain medication in the long run, by over 100mg a day this way.  And again, if your pain clinic experience is like your suggest, which seems to be a running theme in the NHS for whatever reason, see if you can stick with a doctor you get on with at GP surgery. That's still a medical expert and all that, so I'm not suggesting anything dodgy.  I wish I could help more. It's horrible is living with chronic pain.