Lifetime of pain suddenly bought to a crux

After aLifetime of pain due to radical repair on L5/S1 fusion at 26 caused by Spondylolisthesis .....Heads sheared off screws at 32 .....revision Posterior/Anterior......now 54 on multitude of medications.....immune system compromised....now diagnosed with Hypothryroidism, Reumatoid Artheritis. Osteo Artheritis and Hypolypodeamia ....I was recently hospitalised for 5days of run up tests for Suspected Temporal Arteritis which concluded on last day with Temporal Biopsy on final day and send home the following.....anyway after getting infection in Biopsy Scar (Sepsis) and many Antibiotics.....I am now in deplorable situation....afraid to go to my dr as he was against a Prednisone med being administered at all costs due to spinal situation and dangers of Steroid treatment.....he didn't offer weaning and administered Amatryptaline which had a contra with my Duloxtine .....accidentally got into withdrawal with several of my treatments whilst focusing on treating my head infection.....massive problems.....head ringing like there's a thousand cicadas in there ......symptoms similar to panic attack...I can't balance, touch sensitivity is altered....dropping everything I pick up.....Adrenal System out of whack possibly??? .....I have always been able to rationalise my situations before ....but at the moment I am a walking quivering mess......I refuse to believe that after getting this far, that I am at the end, but that's what it feels like.......I live alone so no distractions other than the usual TV etc, from the tinitus (so far undiagnosed.......profuse perspiration, especially on face.....can't manage my usual home chores .....what should I do?????  No no so much that as, has anyone else had this outcome from post surgery head sepsis and will it get better?   Could live somehow day to day with Chronic pain...but this is something else totally.....nausea is awful, sinuses completely messed up and infection seems to have lodged on my face now instead of Biopsy Scar.....hoping some can offer me advice as I'm at my wits end and have rationalised this situation to the extend of my capability 😓😓

18 Replies

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  • After studying all my meds to find an answer I realized a med my dr put me on when originally TA was suspected "Tegratol" could have been causing all of these effects....sheesh for want of stronger word😡😡 Took it from blind faith and although I don't think I need it any more.....I'm already on Gabapentin as well....so here's hoping!!!

  • My advice is to read about Vitamin D and see if your levels are low. Then you will need to take D 3 & K2 . It not easy to get the levels back up.

    Vitamin D is so important in the body it a Hormone and effects everything in the body.

  • Thanks heaps....you are right my GP put me on D vitamins as I had been on Methotrexate for a year with no remission and bloods showed depletion of D.....this was several months before the TA Biopsy and I'm still on them + Calcium + high doses Ascorbic Acid......amazingly my nails began to thicken up and grow for the first time in several yrs and my hair was infinitely better......I'm thinking bout resuming Methotrexate with renewed vigour when I have completely resolved recent hiccups......hugs 😄

  • Calcium drags the body down. To absorb Calcium we need Citrate Magnesium and high doses of Ester C to support the vitamin D in our body

    Peace & Love

  • Taking 5000 mg Ascorbic Acid the calcium u describe is in my D Vitamin Tablets + B 1 & B12 😄😄

  • Pray.  Pray. Pray.  I am praying for you, too.

  • Thankyou I will update tomorrow.....the ringing In my ears has lessened already.......can't believe after all these yrs I can make such a mistake for sooo long 😨😨

  • Ps I find it difficult to pray when I'm in crisis.....but thankfully have a friend who is in a similar situation and she brings prayer to me and fills me will womderful encouragement when she practises laying on of hands for me.....thankyou for your prayers I appreciate them 😍😍

  • I am so sorry but cannot offer you any help other than I can understand about your pain as I too suffer with chronic pain on a daily basis but I am lucky my husband looks after me and I avoid situations that can increase my pain About 25 years ago I went to a radically new Clinic for pain 1st thing I was told was pain is just a figment of my imagination I lasted no longer than 5 mins in the clinic but it made me fight for help.Yes you have pain and just because it can't be seen it is real I know it is hard but you must never give up write a pain diary then when you go to hospital etc take your diary but also take someone with you who you trust they can help by supporting you asking questions you have forgotten to ask it does work my d in law is very ill and was in hospital every 10 -14 days I went with her to go and i said she needed someone more speacilised in her condition she had to wait 4 weeks but now she rarely goes into hospital to stay but they do treat her and not just the symptoms  try it please it could work for you 

    Love and best wishes for your better health

  • Thankyou very much.....was keeping Meds diary in case I made a mistake but going to start a pain diary as well ....hugs😄

  • Hi! So sorry you're feeling like this, it sounds terrible! I haven't had the same treatments as you, so can only really offer support and virtual hugs! I do have a PhD in medicine, but I'm not clinical. It sounds like you have parasympathetic nervous system involvement, which would explain the sweating and touch sensitivity, but this is only an educated opinion. You could also have an inner ear infection, causing the tinnitus and balance problems, it's quite likely as you've said you have a sinus problem, so you may need to go back to GP! I would definitely recommend getting some Actimel or Yakult, as the antibiotics would have killed some of your 'good' bacteria, which you need to fight infection for yourself...it is the gut microflora that is responsible for lots of our immune responses and metabolism of medications...we are entirely dependent on this bacteria to live! I also recommend, in the longer term, looking at the work of Professor Lorimer Moseley...he has lectures on YouTube, and a book called Explain Pain (2nd edition) which is on Amazon but is £55 so not cheap, but in my opinion it's well worth it. He is based at a uni in Australia, and his research on pain is amazing, and gives hope that we can get rid of it, or at least greatly reduce it, by ourselves with the possibility of reducing the pain medications! It is a long term option so won't give you an immediate solution to your current problems although it could help you reduce your anxiety about what's happening to you.

    If I were you, I would write a list of all of your symptoms, in bullet points, then write what you think the explanations are, then the treatments you've tried and what happened to you when you took them, then I would make an appt to see my GP and begin by telling him you have a list of problems and what you think has caused them and could he listen to you and then tell you what he thinks. It will show him that you have taken charge of your own condition but need help from him. He will then be able to go through everything methodically in your order so you will be able to follow it better, and can either correct you in your explanations or agree with them and you can both work out what to do about it. It must seem bleak at the moment, but it's never the end, there is nearly always something else they can try. The problem is that you become a series of diagnoses instead of a person, and it's easier for a dr to try and treat an individual diagnosis and not think about how one treatment will affect your other problems/treatments. Do you have a good pain management specialist? I recently moved house and changed hospitals and it was the best thing I could have done as I'm now really well supported. They introduced me to 'explain pain' and it was a complete revelation, and has made a difference to me already. I also got help from occupational health, who had lots of ideas and aids to make things a bit easier, which my other pain spec hadn't done, I'd just been left to vegetate!!!

    I really hope you get some help soon, and begin to get things back under control, I know how it feels to reach your limit and feel like you can't take it any more, and it's not a good place to be! This is a good place to get support from, I hope someone here can give you more answers than me, take care, Saz x

  • Wow THANKYOU very much.  You have helped me to a starting point which sounds so reasonable and sensible and proactive.....I have had the same Dr for 20 yrs and he is well versed in mechanical, nerve damage and my damaged Sacroiliac joint (compromised from second bone graft harvest) I had two hrs yesterday where my head went quiet and my sinus cavities felt dry and squelching noise in ears cleared.   Was like a zen period.......and in that window I suddenly knew I could be well again and it was a matter of time and management......I will definitely buy the book you recommend and research Proffessor Lorimer Moseley......unfortunately I live 600 km from my Pain Clinic and my GP has worked with me to reasonably put off the need....but had to travel about 6 yrs ago and was put on Gabapentin 300 3/4  x day.....I used to use Hydropool until recently and have Occupational Health Assistance......although til now I have been given hospital Chair and will return for more assistance.....have been to Physio and other than pool they are at a loss to advise further without causing trauma.....so I use light weights for arms and concentrate on upper back strength......I will slowly reimplement all this and research your pain management suggestions....can't thank you enough and hugs 😄😄

  • I am happy to Say, I have been watching Prof L Moseley and found it fascinating.  As I listened more I began to tell my brain my compromised Sacroiliac Joint that was screaming to stop as I was not in danger......next move I wonder if I can send warm fuzzy sheepskin sort feeling to the areas of pain?   Knowledge is indeed power!  I will put money aside I. The next few Wks to purchase book......I again can't thank you enough 😍😍😍

  • Hi sandylou

    Just to say that after my recent pain management clinic appointment I forked out for the Explain Pain book and in my humble opinion it's well worth the money. It's already given me some useful insights - they say knowledge is power! Have seen him on YouTube too, very entertaining as well as informative, and cheaper than the book.

    Best wishes

    Lyndsey

  • As a person who has many medical conditions resulting from years of neck & back issues I can honestly say I feel your pain.

    It can be so very frustrating. And yes, there are times when I too am overwhelmed and feel like things will never get better. 

    My med journal is a must! I never add a medicine, vitamin or herbal supplement without checking the side effects and possible interaction with my list of current meds. Not only does it help to keep me straight as far as what to take when but also when I get weird new symptoms I can check the list to figure out where they are coming from. 

    I'm glad you have a friend to help you with the tough times. You may find it helpful to have a list of 3-5 people who can help in similar situations. Not only to help cope with the feeling of hopelessness but also depression and even going to the occasional Doc appointment when you're nervous or need an extra ear to help keep things straight. 

    I don't want to appear preachy but try to remember the prayer. Maybe find a tasteful pic or sign you can put up so you are reminded of it. If it weren't for prayer, I don't think I'd have made it through the last 12 years. Honestly. 

    My very best wishes that you (or anyone else) may find some of what I've written as helpful. May you find peace in your heart, mind and life. 

  • Thankyou I appreciate it and once I get better I need to get back to volunteering.....I've been isolated too long after getting divorced in a country not my own and becoming overly insular.....no man is an island???? Lol I have been so gifted I. Finding the site & the wonderful peeps on it....I might b in Aussie but it all translates.....hugs and will follow your advice....xxx

  • That positive attitude will get you through most of what life throws your way! I try to tell myself at least once a day, this may be bad but how many don't have my blessings? A roof, food, ability to see a doc? When the big picture becomes too much, be happy you got through the last moment! 

    I'm actually in the US. But pain is pain and I'll take all the help I can get! Lol! Hugs!!

  • You are so right,,,,I often have pondered, over the yrs how people survived in, say, the 18th Century without all the benefits we have now???? Mayb they were just stronger and knowing there was no help did they have a stronger core strength because there was no option to be sedentary and lose core strength, door the poor....I have been hoping to mayb gain a pen pal through this site and you would be just the type. Hee hee.....anyway thanks for your kind words 😍😍😍

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