Desperate need of help...doctor not listening!

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Hi all

sorry if this is long! I had a severe chest infection in November 2013 and was hospitalised. I was then hospitalised again in December. I was off work from November until April suffering with the after effects of this infection. Since February I have suffered from extreme fatigue, pain in my muscles, pains in my tummy and pains in my legs and arms. This has got progressively worse over the past few months. I went to my GP 3 weeks ago and he ran some tests. They all came back negative. I am still in so much pain, it is stopping me from getting on with my daily life. I have 2 small children and I am a secondary school teacher (I love my job!) but I have had to reduce my hours which has had a strain financially. 

I have just returned from another GP appointment to explain that I am still feeling horrendous and to see if there is anything I can take for the pain (other than paracetamol and ibrubrofen) and he basically told me it is all in my head and that I have psychological issues. I came out in tears. I am so so tired and in agony. I can't pick my 1 year old up to carry him because of the pains in my arms. How can I get them to listen and not just ignore me??? 

Any advice appreciated. I am an intelligent and genuine person but I have just been made to feel silly and as though it's all in my head...very unfair when all I wanted was help. 

Xxxx

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  • Posted

    Thanks for the reply Emma. He's given me some codeine for the pain but he seemed to think that I'm not actually in pain. I am so upset. I've printed off a list of symptoms of ME/CFS and highlighted the ones I feel on most days and I'm going to take it to him when I feel I can discuss it without crying. I feel so poorly everyday. Getting out of bed can be a struggle due to the pain and fatigue. I don't feel depressed, I feel exhausted. He said I had a defensive tone and asked me what I thought the problem was that was causing me to be depressed! So unhelpful!

    There are other GPs at the surgery so I think I may make another appt with someone else. I am due to see my respiratory consultant on 26th June so I'm going to mention how I feel to him, although I don't know if he can help.

    Xxx

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    • Posted

      Definitely see if you can get an appointment with one of the others, and ask them if they can refer you to a specialist or run some tests. I am still undiagnosed, but have had so many blood tests and been to a few different specialists to rule things out (I became like this after picking up an infection while traveling in November). It's so frustrating when you don't know what's happening and you feel like you are being fobbed off or not taken seriously. I can completely understand the crying part! 

      I have another appointment with my doctor next week, so I am going to ask about being referred to a CFS specialist (which I only found existed the other day!) I've been recommended lots of supplements, and holisic therapies which I think are worth a try. Stay positive, there does seem to be help out there - it's just finding the right place smile

       

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  • Posted

    Hi lori first can I tell you it's not in your head you are not going mad !!! I have felt the same as you & eventioaly got to the right dr &  the right meds ! But it did take a long time ! Go back & see a different gp ( if that's possible ?)  or change surgery all together ! Ask to be sent to a specialist neuro or rheumatologist any one who deals with c/f/s or even fibromyalgia ( which I've had for 14 yrs & just been told that its c/f/s also ) you need to talk to someone who understands these illnesses because some drs are plain igronant !! The times I've cried & even lost my temper on one occasion ( that dr dosnt look me in the eye !!)  but please know that what your feeling is real & there are millions of us out there ! Get back on the phone book another appointment  & take someone with you for support  ! Let me know how you get on & good luck !

    dont forget its real !!! Xxx

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  • Posted

    Can you ask to see another doctor? I have epilepsy but haven't had a seizure for nearly 8 years.I have been having very similar symptoms and he referred me back to a neurologist. The neurologist seems to think I have CFS but needs some extra bloodwork done first and another brain scan. It annoys me when they seem to think it's all in your head. When I told my mother in law what he said she just said,  you just need to exercise more. All I can suggest is that you go back and refuse to leave until you have your referral. I have to go back to the doctor in a couple of weeks to find out the blood results and get a referral the the CFS clinic at the hospital. Good luck. X 
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  • Posted

    You poor thing . We found a doctor with a nice manner in our gp practice. To get my husband who has CFS  to go to the gp has been difficult so it was vital to pick the right gp. Being honest CFS attracts hypochondriacs we all know one who claims they have it and you can see that they don't. Frustrating. The problem is some gps are skeptical due to these few patients. The majority of sufferers like yourself were high achievers with busy lives ...find out from the receptionist if they are nice who will be understanding and listen with regards to your CFS . We found our gp had a brother who had  CFS ifor 3 years and then recovered. Wonderful. She referred my husband to m.e. Clinic and if he had like you had pain she wanted to refer him to the fibromyalgia clinic. Look up the patients charter you have rights to be referred know your rights. Don't be made to feel a  fraud. But on an interesting note. All pain is in our head, neuron pathways etc all lead to the brain. My father in law has had a lot of strokes they have damaged the pain receptor part of his brain he is now in constant agony and pain killers don't work. The specialist explained it was his brain and nothing he could do. So some agonising pain is in your head it doesn't mean it's not agonising pain. And you can be referred to pain clinic s too. Fight for your rights and get well ... 
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  • Posted

    Thank you all so much for the lovely and encouraging comments. I have rang and booked another appt with a female doctor for Monday. I explained the situation to the receptionist and she said the GP I'm seeing is lovely. Should I request a physical examination?? He didn't do one today; which I thought he might have considering I am in pain. I have a list of my exact symptoms ready to take on Monday. I'm going to not be on the defence immediately, and hope the GP I'm seeing can see that I'm really struggling. It's so frustrating not being able to carry out simple, everyday tasks without being in pain or exhausted! 

    Thanks again for the replies. Any specific advice for when I see GP??

    Xxxxx 

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  • Posted

    Hi, make a list and once you have listed your symptoms and history. Ask her what she thinks it is? Ask her if she thinks it's CFS or fibromyalgia or could it be something else. Just ask lots of questions. I would take a friend as Doctors behave better and your friend can say she is really ill she used to be etc etc ... Which helps. Ask to be referred etc ....  The  annoying thing with gps are u can lead them ... If u say I am at the end of my tether they think breakdown nerves. If you say it's all getting me down they think depression. Try not to lead them. Just give symptoms . My hubby has CFS but he has just been diagnosed with diabeties. Gp missed it just thinking CFS we said to her he was losing weight she thought thyroid . We forgot to mention he was always drinking and getting up 2 or 3 times at night....so list every symptom ...hope all goes we'll sure it will. 
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    • Posted

      Thanks so much Sally. You're definitely right about the leading them. I think when I got upset today (with frustration more than anything else!) he thought I was depressed! I am honestly not depressed. I have a lovely life which I feel blessed for every day! It's this illness that is making me feel down! My mam is going to come with me as she is worried. I have been out with her today and my right hand is very shaky which is a new symptom. She noticed it when I was eating my lunch and has told me she is going to help me get sorted. 

      Thanks again for your comments.

      Hope your husband is getting better! 

      Xxxx

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  • Posted

    Hi lori so glad youve got another appointment !! Well done !!  Just make a list of all & every symptom ! Don't miss anything out even if you feel its unrelated , making a list will stop you forgetting & or losing track of what your trying to say ( this happens to me all the time I go completely blank ?? ). Try & take someone with you it will put you at ease & as someone said  can back you up  ! Just be honest & say you are desperate to find out what's wrong ( not depressed  desperate !!!) 

    ask for a referral to anyone that she thinks could help !! Good luck keep us informed & take care !! X

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    • Posted

      Thank you Dawn. Really appreciate the advice. It's half term this week and I plan to spend most of the week catching up on sleep rather than spending quality time with my children. Luckily my mam helps out with childcare when I'm at work so she is onhand to help out when I feel totally exhausted. My hubby is amazing too. He has his own business and works very hard but he also does a lot of household jobs and cooking as I can't stand for that long without getting cramps in my legs. I will let you all know how the docs goes xxxxxx
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  • Posted

    When I saw the neurologist recently he checked all my reflexes and asked me to spell words backwards. All my reflexes appeared to be fine but I struggled with the words. Hope you get something sorted soon. Another thing he suggested to me was going on a really small dose of anti depressants but not sure why. Good luck 
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  • Posted

    Stories like yours make my blood boil! Whatever is wrong with you, it is not all in your head. This is what doctors tell patients when they can't figure out what is wrong. I've heard this same story so many times since I was diagnosed with CFS/ME. I was also told it was all in my head when I went to my doctor. All tests had come back negative. I went to another doctor who (as with you) told me I had psychological problems. I left her office in tears. I was feeling so ill I thought I had a terminal disease." I knew that it was not "all in my head", went to a specialist at UCLA, and was diagnosed within about 15 minutes:  CFS/ME. Whatever you do, don't doubt yourself. Get to a specialist if you can--someone who's had experience with CFS/ME.  It sounds to me like you could have that illness. Especially if all bloodwork comes back negative and you have unrelenting fatigue and pain. But whatever you have, know that you are not alone...    
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  • Posted

    Here here jackie couldn't agree more !!!! But it's so unfair that us patients have to feel as is we are going mad before we get help !!! It shouldn't be !!  Have a good half term to you all & take care xxx
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