Needed advice on lack of support from my doctors

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In September of 2012 I had some sort of viral, bacterial infection for 10 days, I was very poorly and in bed for 6 days. Before this episode I'd been treated for a number of years for an anxiety and depressive disorder and suffered from severe fatigue and unable to do everyday tasks. After the viral infection I was having vomiting episodes so severe that I ruptured myself and ended up with a hiatal hernia and a inguinal hernia. After the viral infection I went to the doctors, they were dismissive and said it was anxiety related, I was also by this time suffering with severe joint and muscle pain, extreme exhaustion after any kind of physical activity, even cleaning. After going on at the doctor for 4 months they actually did some tests, quite a few and all came back negative except for a vitamin d deficiency. I also had my first physical examination and that's when they discovered the inguinal hernia. Had the op in the July so that's 10 months after the virus. I was also not eating well and suffering from acid and burning in my chest, again after going on for two months, I had a endoscopic examination and that's when a 3 cm sliding hiatal hernia was diagnosed. I have been to the doctor a number of times since, trying to find out the cause of this what feels like nerve pain, joint and muscle pain, headaches, aching hands, feet, knees, forgetting things, needing to go to bed after any activity, very lethargic and numbness and tingling in my hands. I saw the doctor in November only this time I was more vocal, she said there was nothing she could do and that my symptoms were probably all anxiety related. I have also been diagnosed with ibs. My life is a mess, I have difficulty leading a normal existence, I am in constant pain that comes and goes for no reason, temperature changes affect me, any physical exertion affects me. Now I know depression and anxiety have similar symptoms in extreme cases, however I want to do things, that is not the same as depression but I physically can't. I have been advised from friends and family members that they all think it's possible I have CFS/ME or even fibromyalgia, the blood testsI had included one to check for joint inflammation, negative and yet I feel like I've got some sort of arthritic pain. Please can someone tell me how I get some help or advice, in order that I might get at least a proper diagnosis or someone might actually listen to me for a change, this will be two years in September where I have basically been told it's all in my head, it isn't, it's different.

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  • Posted

    Hi Gary

    Wow what you have described is exactly the same symptoms as I have apart from the haitus hernia but I did have severe stomach problems which was diagnosed as campylobacter and then colostrum difficile which I caught in hospital. I also have degenerative disc disease and widespread OA. My blood tests however show inflamation. I have now been diagnosed with fibromyalgia and me/cfs. Have you been referred to a rheumatologist as he can arrange some mri's if necessary but also diagnose you correctly and prescribe the correct medication for you. Are you on any meds at present?

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    • Posted

      To be honest, I'm not taking any meds as the lansoprazole had side effects and I have managed to get the hiatal hernia under control by a change of diet and drinking boiled water from about lunchtime everyday. The doctors have been reluctant to do anything if I'm honest, it has been me that has had to push every step of the way. So much so that I have given up. The only meds I have been taking is co code mol to give me some pain relief but it is only when it's really bad as I have to be careful taking anti inflammotories with a hiatal hernia. To give you an example of what problems I'm facing with the gp, I had to see the urology team not long ago after some pain due to the inguinal hernia op, they sent a letter to my doctor at the beginning of May asking me to be referred back to the surgical team, I went to the doctors expecting to be referred and she said I had to wait for an appointment with the pain management team first and that the letter contained nothing related to being asked to be referred back to surgical. I contacted the hospital the same day, the letter did ask the doctor to refer me back to surgical and they said I have to be more vocal, I have been for nearly two years. I know something is wrong, I know it's not related to either hernia or the op as I had it before. I am 99% certain I have CFS/me or fibro, every single symptom matches, sleep problems, joint and muscle pain with no underlying cause, extreme fatigue after even small amounts of physical exertion, brain fog, I get very irritable due to the pain and lack of sleep. My stomach problems have increased the last two years. What I am struggling with is the fact I am being told it's anxiety related when I've lived with anxiety for years, everything changed after a viral infection, I also know that depression stops you wanting to do anything, I on the other hand want to but can't. I'm sorry if I'm ranting but I feel so fed up and at a loss of what to do next. It is not anxiety and depression that is stopping me from moving forward but severe pain and exhaustion. I get up in the morning aching, I do an hours housework or weeding and I have to go to bed or my joints hurt for two or three days.
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    • Posted

      Yes I also think your condition is fibro/me/cfs and it is your life and your health here that your GP is there to refer you to the correct consultants so you can have a proper diagnosis and treatment. I also cannot take anti inflamatories now as the cause be pain in my chest like a heart attack. I also have high BP and cholesterol which is seperate. I've been signed off work for the past 3 months. Can you go and see a different gp at your surgery? If you can be referred to a rheumy you should also be tested for Lyme disease and rheumatoid arthritis plus any further tests required to rule out other arthritic diseases too. Do you have a family member who can go to your gp with you?
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    • Posted

      Thanks for your reply, I will go and see a different gp at the surgery but have already seen two. As for the rheumatoid arthritis I did have a blood test that was to check for joint inflammation and it can back negative, is that for arthritis ? As for the Lyme disease I was under the impression you could only contract it from being infected by a tick or having one bite you ? I would of also had a rash at first which I haven't had. It is the virus I had that seems to of made things a lot worse, a month before I had the virus my son had glandular fever but my symptoms didn't seem related at all. 
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  • Posted

    Hey Gary, get tested for lyme disease.
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    • Posted

      Thanks for the reply david but I haven't been bitten or infected by a tick, had no rashes. All my symptoms have got a lot worse after a viral infection, like severe flu. I think I was misdiagnosed with depression before the viral infection anyway. I also had a lot of blood tests. Everything came back clear, except vitamin d deficiency. Thanks anyway.
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    • Posted

      Hi Gary, i'm sure according to lyme disease action only 60% of people get the rash. And many are unaware they had been bitten. I'm currently coming into 7 months with post viral fatigue, which has completely ruined my life, out of work, athletic career finished, for now. I had similar symptoms to you, Nov2013 felt unwell, this progressed viral type thing, tight chest, stiff legs, feeling miserable, and really have onyl recovered minimally with lingering fatigue forever present. Peior to this i was training for an ironman 70.3 and had ran several marathons and did several triathlons, so very fit buy now everything it looking like i have basically just burnt myself out. Going to do 3 months chinese medicaine see if that helps. Good luck with your issues. I had my vitamin D measured recently and it was 137 so quite high, very optimal, but i still feel pretty crap.
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    • Posted

      Thanks david, I hope the Chinese medicine route your taking reaps some benefit for you, my vitamin d issue was a deficiency, my own fault as I didn't go out much, that seems to be under control now, CFS and me is often associated with post viral, that's why it's confusing me that my doctor hasn't considered it, once the blood tests came back negative they haven't followed up any other investigations despite the fact my symptoms still persist. I am of the opinion and have been for some time that I don't have a very sympathetic doctor, the fact I had the inguinal hernia and hiatal hernia proved to me that it isn't in my head despite waiting 6 months to get it checked, I understand people's frustration with the way many doctors seem unsympathetic to symptoms that don't show up in a blood test, doesn't mean they don't exist and doesn't mean it's all anxiety related. If I hadn't pushed my doctor my hernias would of gone undiagnosed and the symptoms put down to an anxiety and depressive disorder, I know the difference and I know this is something different. Hope you get somewhere and I wish you well david.
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    • Posted

      Thanks Gary. I know what you mean, i feel so wrong, not myself, yet tests are not showing anything dramatic for me either. And because of this i can sense my GP is going to go down the depression route, which is ridiculous. I mean do i really want to be not working living off paltry benefits, that life maybe for some but definetely 1000% this is not me.

      When people think this is 'in my head' drives me nuts. Oh yeah i was a marathoner runner 6+ years, now all of a sudden i decided to give that up, my job, my life, my finances so i can life off £74/week LOL I'm a logical person, luckilly though thus far my GP has been quite supportive.

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  • Posted

    Wow gary you sound so much like me.. It took me to the age of 53 to get my diagnosis of a rare metabolic syndrome that is an ion channelopathy.. almost every one of your symptoms were exactly like mine.. the pain the weakness chronic fatigue with a couple of extra things that helped nail down my diagnosis.. of Andersen Tawil Syndrome.. the extra somethings were.. paradoxical reactions to medications.. such as certain pain medications especially lidocaine resistance extremely unaffective the way ususally used like having teeth pulled without any numbing.. other signs missed by doctors or disregarded included mild facial issues such as assymetrical small lower jaw.. crooked toes and pinky finger also mild tapering fingers and other mildly dysmorphic features.. I had figured out at a young age that salty foods would make me extremely tired and weak.. (for some individuals actually temporary paralysis occurs) as a kid clumsy and non athletic with inability to pass physical testing as a child.. (some however dont develope weakness until older in age) If this sounds familiar I will share more information about these disorders with you.. a tool you may find helpful that brought up my diagnosis is called Find Zebra which searchs research data bases for possible altermative diagnosis.. I tried a diet for this condition a form of Hypokalemic Period Paralysis and literally twenty some years of pain and stiffness disappeared in three days with appropriate supplementation of Potassium with a low sodium natural foods diet with low carbs ( refine carbs are a no no) it was literally a miracle for me..
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    • Posted

      Honestly katts I don't see what in Gary's description would point to Andersen Tawil's in particular. This is not to say that some symptoms cannot be very similar...
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  • Posted

    Hi Gary, except for the vomiting for which Gizmo gave a possible explanation plus hernias you're a text book case of a chronic fatigue syndrome patient. As you have noticed, not much help can be expected from doctors unless you find the ones who are already familiar with ME/CFS. So don't let yourself be put down, doctors are just humans and most of them know next to nothing about CFS. 

    I hate to be repeating myself but I wonder why people don't go out and try medication that's available to relieve many of the symptoms of CFS. It's not a miracle treatment but it's affordable and safe, and used also for other neurologically based illnesses like MS. Yet if you expect your GP to advice you about medication for this disease, your on a wrong track. 

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    • Posted

      Thank for the reply, the vomiting was when I had the virus and the straining for hours on end probably contributed to the hiatal hernia. To be honest I'm not expecting much help from my gp, it hasn't been very forth coming anyway and family members have repeatedly asked me to change surgery. The complication I've had has been that before the virus I had been treated for an anxiety disorder but it was under control and I had got back to some normality, I think it's been easy for my gp to use that as an excuse to not try too hard with any of the symptoms I'm experiencing now. I do agree that anxiety can cause some issues and nerve pain however knowing myself and knowing my state of mind it is a completely separate issue this time around. I was reasonably active, then viral infection and I've gone down hill. I think if I hadn't previously been diagnosed with an anxiety issue then I might have been taken a bit more seriously.

      i don't know what medication you are talking about ? And I am not looking for that specifically from the gp, what I am looking for is a diagnosis so to give me some reassurance, advice and possibly a path I can follow that will give me some relief from the daily symptoms I seem to suffer. I'm trying to make a positive step if you like in being able to cope better. I've lost all hope in any of the gps in my local practice and don't want to have to live like this if I can do something positive. It's a big positive step for me to actually come on this site.

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    • Posted

      I understand and agree that your previous anxiety issue probably has been a complication on the way to the correct diagnosis. It's unfortunately not uncommon for CFS patients to be diagnosed for a mental disorder, even if it never existed. It's just that we don't know this illness and we don't know that it can cause physical collapses without an apparent reason.

      By medication I mean low dose naltrexone (on which I wrote a topic of its own). What I wrote today was not directed to you in particular, just a general frustration that people expect help from doctors who don't even acknowledge this illness or consider it a mental problem. I don't know UK sites so well, but it's obvious that more effective channels for sharing information between patients are needed. Anyway it's great you took the step and wrote here; hope this has helped a bit. I'd also be very interested in hearing about people who did try LDN (or any other treatment). 

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    • Posted

      Hi Gary, yes a viral or bacterial infection can commonly trigger ME and it was a few weeks after I had left hospital after weeks of antibiotic treatment that I suddenly started having crazy panic attacks, severe depression, memory loss, nor remembering certain words, exhaustion, and my brain felt like it was going round and round and round so fast I could not shut down bad thoughts. Even tv programmes upset me. I thought I had lost the plot. I could hardly walk as joint and muscle pain was so bad and different to my arthritis. I continued to work and then I started to have severe vomiting and diorhea again that I collapsed as I walked into A&E. A relapse which this time made things worse especially migraines and sinus pains. Bad taste in mouth, sound annoyance, tinnitus etc etc. avocado I have heart good things about LDN and I will mention this to my rheumy but he wants me to go on methotrexate due to my inflammatory markers being way to high. This is part of my OA and not cfs/fibro. Gary, you will see light at the end of the tunnel, I think you just need a consultant who specialises in this condition so you can finally put a name to the illness so you can then learn more about it. We can all then chat with one another and help each other through those extra bad days. Please push for another referral. Good luck x
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