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Frequent Infections

Posted , 3 users are following.

Mitsimog59
Mitsimog59

I had to stop taking both Gabapentin and Pregablin due to frequent urine infections which were agony and were mistaken for pancreatitis on admission to hospital.  Gabapentin caused the above and also fevers.  When I changed to Pregabalin, I started to get frequent, severe chest infections.  I have tried both drugs on various increasing does twice already.  What I would like to know is if there are any others of us poor chronic pain sufferers out there who have experienced the same. The only thing that has helped with severe osteo-arthritis in spine and neck, neuropathic and arthritis pain in feet, Charcot's Arthropathy in feet and hypermobility joint syndrome in knees and hips and back have been Fentanyl 100 mcg transdermal patches and Oromorph.  My dr. has now referred me back to Pain Management Clinic Consultant who accused me of only wanting opiates/opioids for the effects.  This is not so, I just want my life (or a small part of it) back.  I would gladly try something new but am only being offered the drugs I have already been on that not only do not work, but have unacceptable side effects, for a third time!  This is all about money of course.  I would be thrilled to try the Medtronic route, but because of cost and having to go before a panel (and more importantly already having had my "card marked" by an unscrupulous dr.) it seems an unlikely option.  Apparently the pain is due to depression! X-rays CT and MRI scans do not lie. Also my surgery notes have been heavily ridacted and my gp refuses to acknowedge that I was first diagnosed with hypermobility (called ligament laxity then) when I was 8 (I'm 56) and then in 1983 and again in 2003 when I had my knees stabilised due to frequent dislocation.  I am so frustrated and upset that I am going to make a formal complaint against him.  Under the Data Protection Act it is illegal to ridact patients' notes. I would leave this surgery in a flash but my edited and "inaccurate" notes will follow me wherever I go.  I feel I'm completely stuffed here. Has anybody had any experience of this and if so, how did you deal with it?  I refuse to go back on drugs that make me ill and feel toxic. The pain is bad enough, I don't need any more anxiety in my life. 

0 likes, 4 replies

4 Replies

  • violetb
    violetb Mitsimog59

    Posted

    Hi Mitsimog59.  Nothing really helpful to say, just:  I can relate.  I am in the U.S., but, still, the medical community is atrocious for the most part. Patients are treated with disdain and suspicion and compartmentalized so that no one ever deals with the 'whole' you.  I won't go into my personal stories:  they'd take a book!

    But for those of us who live with daily pain, and the subsequent fear, discomfort, and inability to 'be' in our own lives, to have to deal with these doctors who are our life line, but do not help, makes it so much harder to keep going on...

    I also have hypermobility, which has caused countless injuries, and now osteoarthritis in most of my joints

    I feel for you.  Good luck.

    • Mitsimog59
      Mitsimog59 violetb

      Posted

      Hi violetb.  Thanks so much for your kind understanding - I know what you mean about a book!  You may find that with hypermobility that you not only suffer from OA and dislocations, but because of the ligament laxity, you may wind up with compressed nerves - I  had a compressed ulna nerve in my elbow that caused pins and needles with numbness in the last 2 fingers of  my right hand.  I was offered a decompression op but was warned that because I had left it  so long, the damage may be permanent (weakness and inability to have full use of my hand).  My nerve decompressed itself and what do you know, the damage is permanent!  So any pins and needles and numbness go straight to your doctor.  I have lost count of the dishes I have broken, the jars I have dropped because I cannot get the lids off etc., to say nothing of a half useless right hand and terrible handwriting! Hypermobility can cause problems in any cell type in your body including stomach and brain cells. Scary no?

      Yes, I have been pigeon-holed and because of this I have permanent numbness in my feet which has been put down to diabetes (which is type II and well controlled). A doctor friend of mine is convinced that the neuropathy is caused by vitamin b12 deficiency, not diabetes, as I don't eat red meat, am on two stomach tablets and a raft of other symptoms including memory loss, sudden hammer toes, fatigue and confusion and has been put down to fibromyalgia, which it ain''t. It's just convenient for the medical profession to label you with this as treatment is cheaper.  It would be really good to be actually diagnosed properly and get proper treatment for it, not what is most economical and expedient for the NHS.  Still, stick to your guns and ask for a second opinion and keep fighting your corner. Bestaluck.

  • Rener
    Rener Mitsimog59

    Posted

    I also suffer from chronic infections due to gabapentin. I wasn't sick until I started taking gabapentin for chronic pain. Every Doctor I saw has said gabapentin is best med for Me. I've had 4 pnuemonia that ended up in ICU IN LAST YEAR AND HAD a pain pump put in that quickly turned into an infection that became bacterial menegitis. I was fine on low dose of methadone but my GP said it's too dangerous.  I've lost use of adrenal glands and every system has been compromised because of this nasty drug. As soon as I detoxxof this non addictive gabapentin. I'm done!  Thanks! Sherri

  • Rener
    Rener Mitsimog59

    Posted

    Please don't go the Medtronic route if you have chronic infections. I did and have had to have 2 removed because of infections. The first one drained for over a month and when the surgeon could literally see the pump under skin that still hadn't closed then he took it out. Of course I then had staph infection. The pump could be seen by the metal showing through my back. We decided to go through abdomen on second attempt. Waited a year but still my CPR levels showed elevation. Suppose to be 0-5 and mine at lowest was 13.3. My Primary convinced Me that the number I was seeing had to do with inflammation!  So we got a new Surgeon as first one said no way. New Surgeon more than happy to implant a new one. Got approved and after it was implanted I have no memory. A week later in emergency surgery it was removed. I was on ventilator with bacterial menegitis. A month later I'm just beginning to recover. Frequent infections and pain pump not a good option in my opinion. Sherri

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