Addison's Disease

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Hi my name is Tracy I have been in agony with my spine now for years , I had an opp to my c5-c6 and had a cage fitted in may this year . I would complain to my GP all the time saying I feel like I'm being strangled . I feel sick all the time have what feels like acid belly and when I need to go to the loo I need to go because I burn before and after . I was put on a lot of medication for my back and neck pain . I was told they were very addictive plus I would have a problem coming off these meds (OxyContin , oxynorm , gabapentin ) because of the morphine . At the time I would of taken any drugs prescription or other because I was crying day and night in agony laying on the Sofia  unable to function or walk . I begged and begged my GP to send me into hospital , he just kept saying " why they can't help you , because you need an opp " well I had dizziness , headaches , electric shocks into my head and jumping limbs , numbness in different parts of my body , I would wake up with what felt like an electric shock in my head , I would cry out in pain. Anyway since my opp I have recently been diagnosed with Addison's and given hydro and fludro to take , twice I have stopped the medication now , does anyone else get a burning in there back not sure if it's my lungs or my kidneys and a stabbing pain in my side , and I feel I'm drinking petrol . My throat hurts to swollow feels all burnt , raw , burns from my throat all the way down my tubes to my belly . I'm still a complete wreck . The hospital says I'm depressed . I told them anyone would be depressed in agony day in day out . Where do you turn if no one believes you . So how am I going to get better . ????? Does it sound like ceiliac disease ? Does anyone else have these issues . I panic every time and get scared . It's like I have a circle in the middle of my back ( top of back ) and it burns . Anyone any ideas . 

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  • Posted

    Dear Tracy!

    If you have been diagnosed with Addison's disease, you can NEVER stop taking your  medication. You can actually die in a few days if your adrenals have stopped making any cortisol or aldosterone. They are essential hormones without which your body cannot sustain life. Pain (stomach, flank, leg or back pain) are symptoms of an Addisonian crisis, which can be fatal. Whilst I understand that your back pain can be connected to other issues and that your Addison's can be connected to possible earlier cortisone medication, the inability of your body to produce cortisol and aldosterone is nevertheless real although it may not be permanent.

    What comes to your stomach burn problems, lack of cortisol can cause low acidity in your stomach (because cortisol is needed to produce stomach acids). This causes poor digestion and heart burn. I suggest that you try taking digestive enzymes for a few weeks to see if this helps. The anti-acid medication may be the wrong move to make, if you already suffer from low acidity. To calm down your stomach linings eat dairy products and small meals with very little if any alkiline drinks. Once your throat can take it, try some more acidic foods or drinks. And most importantly, do not lie down after eating and even sleep in an upright position for a while, so that the stomach contents keep down where they are supposed to be. I hope this helps.

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    • Posted

      Hi Sam thankyou for your reply , I have an appointment tomorrow with the endocrinologist so I will be telling them everything . I have spinal problems  and you tend to hurt everywhere then . Well that's what I put it down to . I  was on a great deal of opiats ( OxyContin) and have cut the dose in half by reducing them slowly every week . Well then I got given hydrocortisone  and fludrocortisone , I said I felt like I was being strangled and my throats  felt hard under my jaw plus I hurt when I swallowed and I also felt there was something in my throat . I had my opp in May and they go threw your neck , to get to your spine . I am in agony with my neck my shoulders both  hurt the left arm feels dead and sooo painful to move and forget doing anything because I can't , my neck hurts to move it . I've just come back from my appointment with the surgeon and I feel like he doesn't care , or even believe me , I can't get anyone to believe me . My GP is new and blames my meds . Who do you turn to for help if no one believes you . I would love to know because it is a mystery to me . I've gone over and over it in my head and I don't know where to turn for help . I am hopping the endo doctor will listen . My neck and back burn and tingle at the back and my throats feels like I'm getting strangled and choking . I'm so so scared and have no one to turn to .

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    • Posted

      Sam what is flank . I have pain everywhere I have a growth on my foot and it digs into my ancle and into my toes , I have no idea really what Addison's Disease is because I'm in the most excruciating pain in my neck shoulders and back , and I put that down to my spine I also feel like my brain is is being squashed and reduced to the size of a golf ball , my whole body hurts and I'm so so scared . Sorry I keep reposting , I jus have not remember you don't know me so trying to write down what I can . Even if it makes me sound crazy in the process. My memory is terrible I have been having double vision , pain in my face before and after opp . I have the start of COPD but still smoke because the pain is out of this world . I wish life was simple . I have so much pain in the back of my head all the way down my shoulders and in my left arm . I would ask for my arm to be cut off at times and my neck , it feels like having nails banged into the top of my head towards the back . I have three children who live with me and the guilt I feel for the way I am is untrue . I feel so so sorry for my children with a mum who is in agony crying in pain o lot , but it's to painful to cry . . I have to take pain killers or I'd scream . I can't believe a person can experience this magnitude of pain and still be alive. My neck goes rigid and burns with pain and it goes into my head and down my neck into my shoulders and body . I wouldn't wish this kind of pain on anyone . EVER

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    • Posted

      It really sounds to me as if you may have a Chiari Malformation. They are often overlooked by some doctors to be "no big deal" or have to be a certain depth before they are really troublesome, but let me assure you as someone with Chiari Malformation that neither of these statements are true. It is unbelievable pain that runs down your cervical spine and for some people, even down the thoracic and lumbar. Addison's disease can be linked to Choari Malformation through Ehlers-Danlos Syndrome, which I also have. It is very common for those of us with EDS to have lots of spinal issues and have ACDF surgery (done through the neck). Chiari makes your head feel like the pressure in it will either blow the top off or compress your skull into a tiny ball. The pressure headaches are unbelievable and I have asked myself many times how someone can have so much pain and go through so much and still live. I don't know how....it's honestly enough pain to make you pass out. There is a surgery for a Chiari Malformation that causes as much suffering as you are going though but it really can be a struggle to find a doc that doesn't think we're just depressed or have anxiety. There are also a couple medications that can help relieve the pressure pain in your head so surgery can be put off or avoided. I would also recommend that you look into Ehlers Danlos Syndrome. The most common types are Hypermobility and Classical. It is very common in those of us with UK ancestry.

      I hope this helps and best of luck. I really hope you can find help. ((hugs))

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    • Posted

      I'm so sorry DaniHMcV I have just read you post to me , I have been everywhere trying to get help in the last month . I was taken off OxyContin , oxynorm , every strong pain killer , long story . I have just had another MRI done on my neck nine months after crying and begging for help and I was told I would need another operation . I even went to the Heath in Cardiff and was ignored and told to return to Carmarthen , after crying begging for help I was sent away , how can medical staff send someone away crying in agony and refuse to help them is besides me , it really is disgusting . They told me to go back to Carmarthen that I did on the way home , and was told I would need another operation by a different surgeon not even sure what is wrong yet . But I can not seem to get anyone to believe me about my pain . I will mention to my GP ,and endocrinologist about Ehlers Danlos Syndrome . Thankyou so much for your reply , life really doesn't seem worth living when your crying in so much pain and no one understands or helps at all , and that in itself scares me , it is like a big hug getting a reply pain is such a lonely thing to go threw . Thanks DaniHMcV xx

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    • Posted

      Tracy15302, have you ever noticed you have increased flexibility compared to your friends or even back in school compared to your classmates? Is your skin doughy, stretchy, extremely soft, like velvet? Or ever was? Perhaps Addison's has changed it over time. Did you ever have crowded teeth? A high-arched palate? Joint pain (you probably have that even just from Addison's)? Have you ever had a dislocation that didn't require a lot of pressure to cause it? Or maybe several subluxations, which are like mini, incomplete dislocations? I really urge you to google both Chiari Malformation and Ehlers-Danlos Syndrome and see if there are symptoms that fit. It's not nearly as rare as doctors forst used to think and if you get a diagnosis, there are doctors in the UK who are well-known for their inderstanding of EDS. Unfortunately, the doctor that knows the most about EDS on the UK is Dr. Kazkaz who is in London, so quite a distance from you, but in the meantime, maybe check out this website and see if you can find common signs with EDS. http://hypermobility.org

      Also, difficulty breathing can be a side effect of fludro and if one experiences this, you must apeak to your doctor about a potential allergy.

      I hope this helps. Thinking of you ((hugs))

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  • Posted

    This is me again Tracy I forgot to mention when I took the meds hydro and fludro I couldn't breath and still can't without feeling out of breath , plus I've got burning in my lungs and pain in my side of my lung . That's why I've stopped the hydro and fludro because I'm so scared of all these pains . Maybe I'm doing things backwards , I'm taking more pain killers because I have lower back problems and have been crying in agony . I can only move because of the pain killers . I phoned my GP crying with back pain I was tossing and turning in pure hell with pain in my lower spine , and my GP and the hospital won't listen . The hospital left me in A and E over night and I said about my back burning and the lower back pain . They said I needed to see the depression doctors . That they couldn't help me . Yes I have had depression for 20 years and taken anti depressants . But no hospital should say they can't help someone , who is on a load of opiats , in pain just been diagnosed with Addison's Disease who has burning in there back . I feel like I have no where to turn to for help . I've tried and tried . Please if anyone can shed some light on this , please do so .

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  • Posted

    Tracey

    I'm v sorry to hear about your back problems, but if you have

    been diagnosed with Addisons Disease it is vital that you

    continue to take your hydro/ fludro tablets. Failure to do that will only make your situation worse. I would have thought there was a case for you to take more than your standard dose but you

    should discuss use this first with your endo.

    Best wishes

    Jonn

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    • Posted

      Thankyou John I have been taking the meds and they help but since taking I have burning and not sure what from . I will have a chat with the endo and I do take 20-25mg a day . Hope your keeping well.
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  • Posted

    Good morning, I realise that it is a very late reply, but I am still going to post it as some of the info I have is very relevant.

    I also have EDS, but for the last 10 years have been suffering from the burning pain in my back, debilitating fatigue and what appears an inflammation everywhere. After years of coming across a total incompetence in the NHS I have also been diagnosed with Crohn's disease privately.

    The burning and debilitating pain in my upper back that would also give me raised temperature was finally explained by an asthma test which came back positive and I was given a strong steroid inhailer. It made a huge difference to how I overall feel, but the pain comes back if I forget to use the inhailer. The extreme fatigue is practically completely gone with the use of prednisolone 25mg. People with Crohn's or similar autoimmune conditions are often made to believe that it is a part of their illness. My experience, however leads me to think that I also have Addison's. The fatigue is not constant, but varies throughout the day from me practically unable to stand up to functioning pretty much ok. I have had a Synachten test done which confirms my suspicions plus my mother has been diagnosed with it too. This, of course, will explain why I feel so much better on prednisolone. 50% of people with autoimmune conditions have more than one and it can be very confusing. The low cortisol in Addison's can be the key to uncontrolled inflammation and possibly might even help with Crohn's. I agree with another contributor that in your case Tracy, you should look into Chiari malformation, but please consider steroidal inhailers as they helped me dramatically. I also hope that my post will encourage other people with autoimmune conditions to get tested for Addison's. I have found cortisol saliva tests available here in UK very reassuring and accessible. Stay strong!

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  • Posted

    I was also diagnosed with Addison's disease and taking gabapentin. I truly believe I was misdiagnosed!  I've been taking high steroids for 2 years now because of this diagnosis. My health has dramatically declined!  Anyone have any idea why or if this is possible. My excruitiating pelvic pain would seem to explain the wearing down of adrenal glands. As soon as I started a slow taper of gabapentin against Doctors of advice to cut back off 3600 mg I found after 1200 mg less per day thevpain started to be less painful. My sodium no longer is dropping enough to be in Hospital. Last blood test it was normal. Is this another false positive type test like the hypoactive thyroid I also was getting?!

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