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Intermittent pain

Posted , 6 users are following.

hailey_83895
hailey_83895

I’m interested to know if anyone suffers with intermittent nerve flare ups with there post herpetic neuralgia?

Mine only occurs occasionally but when it does nine times out of ten only Iv morphine will mask the pain. I’ve seen a surgical consultant recently who had just referred me to Physio as he feels there’s no neurological complaints. All he asked me to do was bend a few ways and signed me off.

I completely feel overwhelmed as he saw me at my physical best and not when I’m having a episode. I don’t want to have to take such strong medication for the rest of my life as at 33 I I feel like I should have better options. I’ve suffered with this now for around 3 years and to be quite frank I’m scared of the long term effects of the pain medication. I am seeking Physio, Pilates and hydro courses as well as a back brace advices by my doctor to help illuminate movements that might promote an attack. I’m hoping to see my family gp who has known me all my life in the next week as he is the only one willing to work through/eliminate any other illnesses. From reading through it seems like everyone has the pain consistantly. I had a scan on my back which didn’t show any thing up but would nerve damage show up on a scan. 

I’m feeling really low and fatigued having to fight this with no real outcome. I’m being treated for post herpetic neuralgia and I just want to be sure that is definitely what it is. Any advice welcome. Sorry for yet another post so soon. 

Hailey 

0 likes, 12 replies

12 Replies

  • susan74911
    susan74911 hailey_83895

    Posted

    Hi Hailey,

    As you say, I have the pain consistently, although it flares up if I go out in the wind. The other thing I wondered about is you said that the pain is on both sides of your back? I thought that PHN only affects one side. Obviously I am not a doctor, so I don't know, but I would want another opinion. I hope your old family doctor can help, and maybe he can explain why the consultant thinks there is no nerve damage. I would ask to be referred to a specialist pain clinic for more investigation.

    Good luck and keep us posted after you see the GP.

  • hailey_83895
    hailey_83895

    Posted

    Thanks Susan, 

    Yes it first occurred on my left side but since then it has always been on my right side. Unfortunately where I’ve had shingles so many times I’ve had it on both sides of my back. I’ve been scrolling through the forum descussions so that I have better understanding of treatments if they still believe it is PHN I’ve also been researching over conditions that present the same symptoms of the server  electric shock pain to see if it could be anything else. I will certainly keep you updated 

    • susan74911
      susan74911 hailey_83895

      Posted

      I think it would be helpful if they could find out why you have had shingles so many times at such a young age.

      It must be really hard to cope with all this when you are looking after your little girl. I get tired enough and there's just my husband and me at home as the children are all grown up. You have my admiration for carrying on with your work too. I only retired after a heart operation went wrong last year and sometimes I think work helped distract me from the pain, but I did find it exhausting.

      Look after yourself.

  • hailey_83895
    hailey_83895

    Posted

    Oh Susan I really feel for you and hope that your heart issue is resolved. What a horrible situation having a heat condition and this constant chronic pain. Thank you so much for your kind words. My little girl is constantly on the go and so are my nanny children. A big distraction but at times a trigger to the pain let alone cleaning. I have to carry on as I want to give my daughter all the things myself and my partner didn’t have when we were little. Like every parent does. I have had to slow down a little and drop a few cleans so I know only work 4 days a week. I just want answers and to be diagnosed properly and to finally know 100% what is wrong. If nhs fails I will have to go private as there is obviously something wrong and I want to make sure they’ve not missed diagnosed me. Take care of yourself 
  • lennybread
    lennybread hailey_83895

    Posted

    Hi Hailey,

    So sorry you are suffering from the dreaded PHN. I too have PHN and it only flares up probably once a week. I can stop it almost completely with Lyrica 75  and only one tablet. Lyrica is a nerve drug originally designed for Epilepsy and was found to also work wonders with PHN.

    Cheers

    • hailey_83895
      hailey_83895 lennybread

      Posted

      Hi Lenny,

      Thank you it’s good to know that there are others that get flare ups rather then consistant pain. What are your trigger points may I ask? 

      Hailey 

    • lennybread
      lennybread hailey_83895

      Posted

      Hailey, my trigger points used to be Alcahol until I gave up and now it is often humidity and sweating as well as activity in colder weather. I only had the one bout of Shingles which by the way should be called Shitgles.

      It was on the left side of my torso and was so painful I was bed ridden for a month

      I did get relief using a brace and opiates and I really didn't give a damn weather it could be addictive or not. Doctors don't seem to understand how painful this condition is.

    • hailey_83895
      hailey_83895 lennybread

      Posted

      Thanks for your response Lenny. I’ve just got back from seeing my gp who now wants to treat me as if it was mechanical /muscular/ pinched nerve etc to see if by using the back brace and Physio, Pilates and diazepam to be taken straight away when it triggers. I’m going to continue taking gabapentin until new year then they want to wean me off of it and see how my nerves/back responds. This is basically to work out if it’s post herpetic neuralgia or muscle related. It’s a shame it’s taken 3 years to come to this decision. Fingers crossed I get a definitive answer soon so I can learn how best to control it. As like you I manage the pain with the most amount of opiates as when it hits nothing else can control it. Have you been referred to Physio and back clinic at all? 
  • charlie58834
    charlie58834 hailey_83895

    Posted

    I think you will find that all of us have exacerbation of pain. Can be set off by heat, touch, wind, or other stimuli.

    I’m not sure why your surgical consultant would say there is no neurological issue, if you’ve been treated for PHN?  Did this start with shingles?  If you have PHN, it is PURELY neurological. And a back brace?  That would not fit PHN treatment at all.  PHN affects ONLY the sensory nerves, not motor nerves, muscles, bone, etc. 

    My own opinion from a 40-year career in medical psychology:  I think opiates should have no place in PHN treatment. Too much danger of sedation and addiction. Others will disagree with me on this site. I manage mine with only topical creams/gels such as Aspercreme or lidocaine gel, for 27 years now. Also antidepressant medication. 

    • hailey_83895
      hailey_83895 charlie58834

      Posted

      Hi Charlie, 

      Yes it all started with shingles.! I’ve had them many times. It flares up when it wishes generally if I’ve done something to strenuous, cold seems to effect it too. 

      I’m going back to the doctors to ask to be referred to pain mamagement this time and also to get a proper diagnosis of what it is. I don’t see how if I can touch my toes that it’s not neurological 

      Thanks for your advice 

  • charlie58834
    charlie58834 hailey_83895

    Posted

    A pain management program sounds like a good idea. A good pain management program should work toward getting away from opiates, finding other methods to manage pain, and learning cognitive behavior therapy (CBT) to deal with the emotional portion of this episode of your life. 
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