Idk what to do anymore

Im new to this site this my first post Im wondering if anyone has had the same problems as me I had 3 abdominal surgerys that have left me with the most horrible pain it's been at least a year since my surgerys... And haven't bin able to work I spend most of my time in bed i have bin to the emergency room 3 time in each month since February 2014 having medical insurance is a thing of the past since my pain keeps me from working so I can't get insurance.... So many trips to the hospital has left me branded narcotic depending... Basically drug seeking person... I recently been approved for a program called the Gold card it almost like insurance but it's only good at certain clinics but the doctor I see there in my opinion doesn't believe me she says I have neuropathic pain(nerve damage) but the meds have not helped me at all I been on lyrica..gabapention...amitrptilye...tramadol ... Almost all anti depressants..and nothing seem to work .... Any1 going thru what I'm going thru ... If so what's helping you .... And y is it that people with chronic pain are looked at as narcotic depending....aka nice way doctors say drug addicts or is it only me ... Im so depressed I never thought I be like this 27yo and suffering in pain

11 Replies

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  • Hi usermike1187 u need to go back to u GP and get them to send u to a pain specialist they will sort u out with the right Medes also send u to the right specialist that u need to se

  • Hello just seen you posting.

    My heart goes out to you.

    You are only 27yrs my daughter's age.

    I have some problems but I am in my 50s.

    Mine are prolapse problems.

    And yes I have to decide myself what is the appropriate surgery to go forward with.

    And nothing is concrete. I can only get opinions and try to draw my own conclusions and hope for the best.

    There is this 'Pudendal Nerve Hope site' with a questionnaire you can fill out for your symptoms to see if this problem relates to you.

    Try this first is you think this is the problem.

    UCLH NHS Dr. Baranowski may be able to help.

    However I believe you need to in the area for the hospital.

    The above avenue may be worth researching.

    There are other forums you may be able to chat on.

    Sandra

  • From what you describe itsounds like you do have neuropathic pain. If so tehn opiates simply do not work. it also sounds like you havebeen given thestandard treatment of pregabalin( lyrica) and amytiptiline. However this regime doesnot always work and their are other things that can betried. Have you been prescribed capsaisin cream? You need to be put into a pain clinic's treatment. I thinkyouare in the USA, but go anyway to the British pain Society's website and look up the pain pathway. Good luck, don't loose hope. You are young and new drugs are being trialled now. infact that is something else you could o- look for a clincial trialand see if you canget onto it.

  • Hi Usermike1187,

    I have just joined this forum as I have similar problems myself. I am so sorry for the constant pain you are in. I wonder if you have ever been assessed for ME/CFS of Fibromyalgia? This is what I have as well as a host of other ailments! I am in my 50's but my conditions also affect young people and Im told can be brought on my trauma, injury, stress, following operations etc. Unfortunately it is diagnosed by exclusion and there is no cure apparently although I continue to try things. Sadly even in the 21st century it is still a misunderstood condition so if you decide to check it out its important to find a doctor with specialist knowledge of it.

    Good luck to you

  • Hi usermike1187

    I'm so very sorry you are suffering in this way. I don't think there is anyone on this site that doesn't know the desperation that you are feeling.

    For most of us the stark truth is there won't be a cure so we need to take a very holistic approach to management. As Yogibe and others have said - a good pain specialist is essential, to get the right mix of meds and possibly procedures like nerve blocks etc.

    Secondly, our attitude to our pain is hugely important - it sounds mad I know but learning to accept the pain will make it more manageable to live with. I ( and many many others) have found such powerful management of the pain by using Mindfulness - check out Jon Kabat Zinn on YouTube. His programme has helped me immensely. I have had six prolapsed discs and multiple major surgeries on my spine and shoulder. In the Spring I was in A&E with my head in blocks thinking that another disc had gone - it was only the practice of Mindfulness that protected me from complete overwhelm in that situation. I laid there for hours only able to look at the ceiling so my thoughts could have gone wild but they didn't. I really learnt the power of Mindfulness that night tho I had been cynical before.

    Finally, get good support, in your personal life and on forums like this - there is nothing like 'talking' to others who really get it.

    I wish you all the very best on your journey to the best outcome you can get,

    Very best wishes,

    Shirley

  • Ah usermike, a man after me own heart, Jeeze but do I know what you mean, and driving out this point about your an addict and malingerer is almost impossible, for they can not see pain and they can not end nerve compression (unless surgery) and you've had that, so I'm afraid you are going to have to just bloody tell them to send you to a pain clinic pronto, and do not worry what they think, but the point about addiction is serious, so learn to use the pain meds so as they don't use you as your only very young so please learn to only use them sparingly because they can bite you in the arse and not let go and then that is more of a problem for you best Alex

  • Echoing everything that Alex has said 😊

  • Ohh Its really sad to hear that you are suffering from a severe pain, I personally suggest you to visit the specialist doctor. orthopedicsurgerysandiego.com/

  • Hi, I'm in the UK so things are a bit different over here. I have the same pain as you and have had it for the last 5 years. I've tried all sorts, drugs, treatments etc but like you nothing works. It has been suggested that i try Spinal Cord stimulation but I'm not overly keen about that. Currently I take 140mg of Targinact & 300mg of pregabalin & 3 grams of paracetamol a day, this does take the edge off the pain but there are also days when it does nothing and I'm left writhing in bed all day.

    The amount of Targinact which is oxycodone and naloxone forever keeps increasing and will forever increase as my body's tolerance increases, so its like a vicious circle.

    I am going to a world reknowned clinic shortly so hopefully they will have some answers for me.

    Where are you from? What sort of treatments have you had?

  • Hi Usermike1187, i know exactly what you have been going through, I was going through the same problems for 7 years and the doctors told me it was neuropathic.

    Solution: NO MORE SURGERY,,, change your diet go vegan,,, pray very hard,, do research on herbs for abdominal pain,,,,do castor oil pack 3-4 times per week,,,,walk a lot,,,,,,and just so you know time heals.

    It took me 7 years and i am still healing. If you need somone to talk to please dont hesitate.

    Recover soon

    Marvalous

  • Hello idk, sorry to hear about your ongoing pain, I know how you're feeling, I'm wide awake now, simply reason I don't get any sleep at night due to pain in my lower back and it's causing some abdominal pain too,I have been I have try every painkillers there's,but nothing seems to not even take the edge off my pain.I'm not one who tends to mone and I always try to cover up my imotion but I cannot do it any Moy,iv bin a chronic pain suffer for almost 4 years with no results from taking painkillers, iv also try tens machine heath lamps chiropractic but no result,iv recent been refer to pain management but due to upcoming surgery for the 3 time for the same problem the pain management programme is being put on hold until January, being told by the doctor's that my body does not respond to painkillers and it rejects it so that's the reason they're not effected when I take them,best of luck to you with managing the pain tho.

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