Nerve Pain

I continue to have pain at 3 of the sites of my keyhole surgery when my gallbladder was removed last August. My GP referred me to a gastro to double check nothing had been missed.

His theories were it could be:

1. Bile Salt Malabsorption causing new pain

2. An increase in my IBS symptoms

3. A stone remaining after surgery (we agreed the symptoms do not really fit for this to be it)

4. Nerve pain from the surgery

He’s sending me for a SeHCAT scan to check for Bile Salt Malabsorption with the offer of treatment if it is. I had already suspected I had a mild case of this as my motions are considerably looser than they were before. The treatment could be tricky though as I am inclined towards constipation. Anyway that test is happening soon.

We’ve established that food doesn’t influence the pain so I am very sceptical that anything except option 4 nerve pain is the diagnosis. It isn’t about the surgeon doing anything wrong particularly. It’s easy to stretch and damage nerves. And as someone whose nervous system was already heightened it’s a big risk factor for surgery. Something I didn’t know. But the surgery was absolutely necessary as my gallbladder was chronically inflammed and full of stones and I was very ill before I had it out.

Meanwhile I’ve been trying to find a supplement treatment for the nerve pain. I tried upping my dose of amitriptyline from 30mg to 40mg but the side effects scared me. I was scared of losing the benefit 30mg gave me so I dropped back straight away.

The pain is almost constant but varies from point to point. Some days just one area is hurting, some days they all join in. It’s wearing and depressing. I’m upset that my gastro’s letter to my GP minimises what is a very distressing condition for me by saying it doesn’t stop me doing things and inaccurately recording how it occurs. Sigh. Now that’s on my records forever. It’s always there, it moves around, it’s more intense some days, if I’m lucky I get a couple of hours off or where I can ignore it, then it’s always there again.

I had great success with daily 600mg of Alpha Lipoic Acid which after a week relieved the pain almost fully. It also helped massively with the allodynia of my waist which has meant I can’t wear anything touching my waist since 2016.  But I also had the worst anxiety and panic attacks I’ve ever had about 2-3 weeks into taking Lipoic Acid. I can’t help but wonder if the two are not connected. I stopped taking the Lipoic Acid and although the anxiety re-occurred without it my anxiety wasn’t as strong.

I’m now trying a lower dose to see if I can get the pain killing without increasing anxiety – *if* the two are even connected! It may be perimenopause and hormone inbalances. I tried 100mg, 200mg and am now at 300mg which makes some of the worst pain more bearable but it’s still ever present. It also helps a little with the waist pain. But I have had some panic symptoms since I upped the dose which may be connected.

I hate having to try and muddle through and now know what is causing what. If I seek help from my GP the answer would be straight forward to try me on Duloxetine as that could address both anxiety and pain and also help with my low level depression. But I am worried about the impact of taking such as a drug as it interacts with so many other medications and can be terrible to withdraw from. I had an awful time with withdrawal symptoms from Effexor another SNRI years ago before ME.

It would save me from 2nd guessing and I’d have someone to take some responsibility with me. But accessing GP appointments is very challenging for me and I find appointments and the whole system quite traumatic because of so many bad past experiences. I’m not confident I’d have an actively interested GP or even get to see the same one twice. Also they tell you to suck up side effects for up to a month which can include anxiety, headaches, pain. So on balance I feel I should continue to search for a less aggressive and fixed solution. And keep that option as a fall back.

I have other options I can explore in the supplements – inositol, l-carnitine, tumeric. It’s having the patience and time to experiment with each.

There is a cost implication in using supplements instead of prescriptions. But I control what I take and when. I can stop or adjust dosage as needs be. It’s just a long process to find the right fit and (as anxiety will do) I keep worrying if it’s the right course. That it would be easier to trust a doctor and throw some brain altering prescription at it rather than experiment at doing the same on my own. Figuring it out takes a lot of energy and focus.

No easy answer here. Aside from live with the pain.

 

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