What to do when pain is un-diagnosable

[Sarek]

Hi all, I've been following numerous posts with interest and no little admiration of you all.

Over a year ago for no reason I started to get painful pins and needles in my hands and feet that progressed to other unwanted sensations across my body including burning, tingling, numbess and stinging. At its worse it is like being whipped all over my body with stinging nettles.. Other pains are amplified and I've now added tinnitus to the pot. I'm on 1200mg (4 * 300mg) Gabapentin. These help take the edge off but do not take the symptoms away. I'm undiagnosed (even after a lot of tests) and currently opinion seems to be its un-diagnosable.

I am waiting for the pain clinic but in the mean time do seem to be having some success with my own pain management routines. I've listed sources of information here either for others who might feel at a dead end with surgeons and specialists, but also as I'd be interested in others' experiences.

- pain management knowledge and support from flippinpain.co.uk/

- management exercises and activities from paintrainer.org/

- targeted advice from painconcern.org.uk/contact/

All are free.

[PainGo1]

Hello Sarek, thank you for this information which I will look at more closely. It must be very frustrating having this suddenly take hold without any reason, I have been through a similar experience with my foot but that was due to an injury. I still have chronic pain now and find it very difficult to deal with now that the health professionals who were looking after me, have decided they can do no more. It's a lonely place to be. This forum is very helpful and makes you realise just how many people are dealing with various forms of pain on a daily basis. We are all very brave.

[Sarek in reply to PainGo1]

Sorry to hear about your pain and I agree it is lonely at times. It’s a cliché that looking in the positive helps… but I think it does. I hope you can still get out and do things. Regards

[Defenders in reply to Sarek]

So sorry for your problems Sarek. I always ask when others have similar unexplained pain, have you ever been prescribed Quinoline antibiotics such as Ciprofloxacin. This med can cause all your symptoms! I took it and have been diagnosed, by an eminent Consultant in the UK, with peripheral neuropathy in my lower legs and feet. A Neurophysiologist has diagnosed me with Axonal Sensory Neuropathy! All caused by Ciprofloxacin. I do hope it’s something you haven’t taken!

[Sarek in reply to Defenders]

Sorry to hear about your diagnosis. I’ve not taken that medication. I’m on blood pressure meds but have been for some time. My consultant neurologist effectively said it happens, it’s real, and it’s probably triggered by some crisis but we don’t know why! Hope things improve for you

[timbowPSP]

Thanks Sarek, I like your positive approach to helping others find relief. I am with PSP aged 80, but no serious complaints about pain! Personally I reckon wee all have to think 'outside the box', and NOT to rely on the health service and so called experts to save us. We are very often cutting edge cases, and it requires new thinking and actions. Your perverse range of pains may benefit from an experienced homeopath's attention. And mushrooms/fungi, and of course CBD should be part of the repertoire. I use all of those things, not all at once, and it sure helps me! Carry on cowboy and enjoy life when you can ........ best wishes TIMbow PSP

[Sarek in reply to timbowPSP]

Thanks… I’m certainly learning a lot these days that I never expected to need!!

[Westlifefan]

Hello, I suffered with chronic lower back pain going through hips and down each leg for two years before hitting my lowest point with depression and reclusiveness basically forcing my doctor to refer me for scanning and neuro. I can relate to all your different sensations and one I describe is like have corkscrews going through my hips when trying to walk any distance. Spent most those two years bent over a worktop or bench to get any kind of relief. Gabapentin didn't even touch the sides, was then changed on to pregabalin, then after diagnosis of bulging discs impinging on nerves I was given facet joint injections in four places. The 1st round gave some kind of relief, 2nd round I was pain free and came off the pregabalin, that was tough going, need to be done very gradually. Pain returns after a few months and I was determined not to go back on pregabalin, I follow the advice on the flippin campaign too and still attend the Prof at the pain clinic, but am now off pain meds, use distraction therapy to cope on bad days. I hope you get a diagnosis soon.

[Sarek in reply to Westlifefan]

Sorry to hear about your pain and trials and tribulations that went with it but glad flipping pain worked to help. I’m surprised so few Drs have heard about it. One Dr I saw thought I was just being rude about my pain when it was mentioned!!!

[Acocoa]

Hello Sarek,So sorry you are experiencing a lot of pain, and frustration with yourself or and condition.

Your symptoms sounds like Fibromyalgia/chronic pain. Your symptoms is what I have been going through for 17 years . Please ask your GP to refer you to Neurologist for a diagnosis.

Medication helps to soothe the pain but not completely take it away. I take Amitriptilin 50mg and cocodemol at night and in the day I take Vitamins and do stretches and paracetamol and ibuprofen. Ask your doctor for a review of your medication. What work for me may not work for you. Amitriptilin is helping mefor 4 yrs. I get flare ups when events or food triggers my pain 😩

There is also a Fibromyalgia group on Health unlock. Type it on the search tab. You get lots of support from people with lived experience🤝🏾🤞🏽

I hope you find the help and support you need, to help you cope with pain. Sending you gentle hugs 🫂, comfort and healing mercies 💜🌼

[Sarek]

Thank you for your kind words and thoughts. I saw a consultant neurologist and he said it was basically undiagnosable. I’m going to push again with go for a further diagnosis but I’m hoping to get to the pain clinic and see if they can better refer. In the meantime I return healing thoughts to you.🙏

[Batty1]

Ive been dealing with this sensation for a while now and was diagnosed with small fiber neuropathy (no known cause) but I really think the cause is hormone induced since I developed this issue shortly after losing my thyroid to cancer prior to thyroidectomy I did not have this issue.

[Sarek in reply to Batty1]

Thanks - sorry to hear that. It’s interesting as I had a swollen thyroid just before this started. The swelling has been checked ok and in-fact the swelling has gone down… but thyroid issues do run in my family.

[Sgoodwin70]

Hi Sarek.. if you look up a pain physiotherapist called Jim Prussak in California he is called the PainPT he is very helpful. He does YouTube videos

[Coastwalker]

Most of your symptoms are listed symptoms of Vitamin B12 deficiency. Suggestion only - Ask for an ‘Active’ (not serum) vitamin B12 blood test as it’s more accurate.

Or buy your own on line finger prick ‘Active Vitamin B12’ blood test.

[Imagine1]

Hi Sarek. I had an accident over 2 years ago and broke my foot/ankle, nothing was done about it and I am now left with a condition called Complex Regional Pain Syndrome which I now have for the rest of my life, thanks to the NHS. My foot healed but this is now the pain that I have. I don't know whether you might have this or something similar. It is very rare and hard to diagnose. I kept going to the hospital and saw lots of specialists because the pain wasn't normal after all this time. With this condition the pain doesn't necessary need to be in the area that was injured it can be anywhere. I need an operation onmy hand and I can't have it due to the possibility of getting this condition in my hand or another limb. The pain is shocking. I would ask your doctor or get a second opinion about this because you need to know. Let me know how you get on. Good Luck. xx

[Sarek]

Thanks - crps has been suggested by a member of my family. I’m going to go chase down my appointment with the pain clinic and also ask how these diagnoses get made!! I hope things get better for you. The pain management stuff I’ve tried seems to help a bit