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Can't cope with the pain :-(

I have been suffering with god awful back and left hip pain for around a year now it started shortly after regaining the feeling in my left side after what I now know was a relapse. I attended the pain clinic in hospital and was sent for a mri (ms sufferers best friend!) and the results were that I had spinal lesions and these were resulting in the pain I am in. However the hospital did not send for me for my results they were sent to m gp which I did not know about until I rang up to enquire. I assume the pain clinic has no ideas to help me. I am seeing my neurologist on the 19th a month early because I told my nurse about these results but I have to get the scan sent to him because it was done in a different hospital! Grrr! But until then I’m in agony and I have been on 2 different nerve painkillers which if I’m honest were no help at all. Feeling VERY fed up and lost.

So sorry to read this, you haven’t listed what these nerve pain killers are? I can tell you that for me Amitriptyline has been very good. My friend uses Lyrica/Pregablin and tells me you can increase the dose when the pain gets bad; this does make her very sleepy though. I would also be aware that you could have something else going on. Be aware that there are other causes of hip pain, as I have been told many times; ‘things aren’t always MS’.

I hope you are able to get some help from your Neurologist.

Wendy x

Hi Steph,

The first question that springs to mind - or one to ask your doctor, is: Is it definitely nerve pain? If two lots of neuropathic painkillers haven’t touched it, the answer’s possibly no.

Not ALL MS pain is nerve pain. If you’ve had a bad relapse, from which you’ve lost some muscle strength and control, then you may literally have hurt yourself, because you’re not standing/sitting/walking normally. Parts of the body that weren’t designed to take the strain may have had to compensate for muscles that weren’t working properly, and this results in pain and injury.

If you haven’t already, I’d definitely check out “normal” painkillers (i.e. not for nerve pain) and/or physiotherapy, which can improve muscle strength, gait, and posture, if they are contributing to the problem.

Unfortunately, my experience is that musculo-skeletal pain as a consequence of MS is very often dismissed. My neuro is only interested in nerve problems, so he tends to assume every pain is nerve pain. My own belief is I suffer hardly at all from nerve pain, and almost exclusively from joint and muscle pain caused by spasticity and altered gait. But this tends to get ignored at neuro appointments, and I’m even told it’s not due to the MS.

Funny, then, that Baclofen (anti-spasticity agent) along with painkillers (but not neuro painkillers) DO seem to help.

Good luck!

Tina

I too have this. Just been confirmed that I have a new lesion at T4, as well as existing at C2-3. I generally experience fairly intolerable musculoskeletal pain in the left side of pelvis/hip/thigh and the neuropathic burning/buzzing etc. Is much worse just now as have just finished steroids & think some nerve ‘re-routing’ may be taking place. I take a combination of gabapentin, neurofen plus & tramadol. Have had a couple of months on the max doses before but not very conducive to work. I was also prescribed amytriptyline for a while at night which really helped me sleep. Left with me a hangover though, so had to stop. I fully sympathise with you & hope your drs will be prepared to help. Mine are comfortable letting me adjust doses as required.

Have you seen a neuro physio? If you have damage you should see one anyway, but they may be able to show you some exercises to do that will help with pain over time. They are also very good at knowing just where your damage is and whether it’s only nerve pain, or say muscle spasm and nerve pain. Your GP can refere you.

You might benefit from a Rehab clinic appt. too, discuss this with your nurse, but in the meantime,see if your GP can prescribe you something,I take pregablin ( lyrica ) for pain.

Hi Step MRI scans etc can be sent easily between hospitals via IEP If you contact the Nero secretary and ask them to request the images. Alternatively you can ask for them to be put onto CD and you can take them to the neurologist to uploaded. You would need to do this before your appointment as it can sometimes take a couple of days to upload. I request scans all the time for my patients and usually get them within a few days Please don’t assume that the pain team do not know how to help you. Speak to the pain team again before your neuro appointment as it was them who requested the MRI in the first place! Lesley

Hi,

I have quite a lot of spinal lesions with various resulting symptoms including severe nerve pain and general pain. After being referred to the Pain Management Clinic, and trying other drugs first, I was eventually prescribed BuTrans patches which are weekly, stick on patches of Buprenorphine (not Morphine but a weaker relative) and they are BRILLIANT for the nerve and chronic pain. I can also take an oral tablet for breakthrough pain although the oral ones are stronger so I try not to take them unless I really need them.

They are really worth a try and can be prescribed by a GP I think, some just aren’t aware of it and the doses needed. They come in 5 and 10 microgram patches and I was started on 5 and staged up until i received benefit. I have 15 a week and I really know about it if I forget one so I am a convert.

Hope this helps x

I have quite a lot of spinal lesions with various resulting symptoms including severe nerve pain and general pain. After being referred to the Pain Management Clinic, and trying other drugs first, I was eventually prescribed BuTrans patches which are weekly, stick on patches of Buprenorphine (not Morphine but a weaker relative) and they are BRILLIANT for the nerve and chronic pain.

Whilst Butans patches are good, they did not suit me and I’ve had to come off of them. I still take Amitriptyline for nerve pain and Co-Dyramol as and when for other spinal pain. I feel more in control of my pain treatment and if I get constipated I can leave off the Cody-drymal and use alternative therapies. Just a thought

Wendy x

Sorry about my lack of response I found all the replies interesting and hopefully will be useful when I see my neuro. I was on amitriptyline and pregablin. My gp told me that amitriptyline either works or it doesn’t and you can probably guess it didnt for me. The pregablin took the edge of the worst of the pain for a while but my gp could not up the dose any more so we both decided there was no point in me taking another tablet that was no use to me. I’m at the hospital where I got the MRI tomorrow for my jaw (really bad pains bt no answer to why) so think I will call down to the pain clinic and ask for the scans to be sent to the othe hosp. Steph