Right diagnosis?

Hello! I'm off to see my GP this afternoon with a list of symptoms so long it's ridiculous!

About 5 years ago I saw a rheumatologist who said he thought I had mild Lupus, but if he had been a fibro expert he would say I had Firbo...Helpful! I think all my symptoms are fibro and they are getting worse. Main ones are no energy, global pins and needles, neck, upper back, rib pain, burning itchy skin, gastric problems etc, etc!

I've been seeing a cranial osteopath who has been brilliant over the years and saved me from taking drugs and keeping me sane, but recently the treatments send me off the wall and she is also worried as I bruised badly after soft tissue massage. My anxiety levels are getting worse.

so, do you think I should ask for a full blood count, liver blood tests or see the ? Something's not right but I don't know how to take this forward.as the GP thinks I'm just suffering from anxiety and reflux! (I have an underactive thyroid too).

8 Replies

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  • Hi honey67,

    I went to my GP on Monday afternoon with a list of 20 problems but of course I could only discuss a couple of them. He said he'd scan my list into the computer, as I have an ESA assessment hanging over me at the moment ( just the form) and I wanted him to be up to date with all that is going on in case ATOS contact him.

    He immediately said he'd do a full blood screening, as I haven't had blood tests for ages, so I was pleased about that but it isn't for a couple of weeks as the nurses are very booked up. My OH took a urine sample to the surgery this am, too. He also did my BP which was quite high (not surprising as I was feeling very anxious!) so he is going to keep an eye on that as well.

    GP will see me when he has results of blood tests.

    Like you, I bruise very easily and I have a deep tissue massage every week as this helps me to get through each week. I think bruising is something we get when we have Fibromyalgia and I am very fair skinned anyway, so have always been prone to bruising. However, I think you should tell your GP about this as it might be an indication of something else.

    I am in a lot of pain today especially head and neck/shoulder pain so not having a very good day, as I don't function very well when my head hurts so much as it affects my eyes as well and my vision. So... sorry if this is a bit of a ramble!

    Anyway, what I really want to say is... If your GP doesn't suggest blood screening, perhaps you could ask him if he'd mind requesting one.

    Do tell him about the bruising.

    Ask for referral to a Rheumatologist if you think that would be the right move for you. He or she would be able to diagnose whether your symptoms are Fibromyalgia or Lupus.

    Tell him as much as you can in the time allowed and ask if he'd take your list from you as he should be able to scan it into your records for future reference. I didn't know they could do that till I went on Monday so I was glad I'd made a list!

    I suffer with anxiety too and I think that this condition exacerbates anxiety because it is such a difficult condition to live with...so don't be fobbed off by your Dr thinking that is all you are suffering from. Your physical symptoms need to be addressed.

    I hope this is helpful. It has taken me ages to type because I am all fingers and thumbs and my brain isn't firing on all cylinders today because of the bad headache.

    Good luck. I'll be thinking of you. Let us know how you get on.

    Take care,

    Love and hugs

    Saskia XX

  • Hi Saskia, thank you for taking the time to reply, it's very kind of you. I also suffer with head, neck pain and it too affects my vision, like a vail over my eyes, very weird. The osteopath helps with this though.

    The anxiety is awful, but I think it starts because I don't feel right and then turns into mental anxiety...so hard to explain to the dr!

    I've got a list ready for the dr and I hope she'll listen to me and I will tell her about the bruising.

    I hope your day improves and I'll let you know how I get on.

    Keep smiling :)

    Debs

  • You are very welcome, Debs,

    I hope your appt. went well and you were able to get some answers /help/advice and a referral, if necessary.

    The head/neck/shoulder pain is a killer isn't it?! My day just doesn't go well when I have a bad headache. It hasn't shifted all day, despite medication, so I am going up to bed in a minute. the cranial osteopath sounds very good and I would quite like to try this but it is the cost involved, as I have a deep tissue massage every week and can't really afford any more therapies. I need to win the lottery ha ha!...then I'd have every treatment going and find out which ones suited me. Dream on, eh!........sigh.....

    Anxiety is awful, too. I have been an anxious person since I was a child but I could control it when I was working. However, what happened to me and the Fibromyalgia and other health problems have exacerbated my anxiety and, in my case, going to the Dr makes me worse. I hope your Dr understands you when you try to explain your feelings. I can understand. the physical symptoms are bad enough without all the added worries which can escalate in your mind. I worry about the future and how I would manage if I lost my OH He is 10 and a half years older than me.

    I'll sign off now. Please let me know how you got on and if you feel happier now you've spoken to your Dr.

    Night, night,

    Love and hugs, Saskia. XX

  • Hello Saskia,

    Well the appointment didn't go how I'd planned! I produced my list of symptoms and said I thought I needed by thyroid testing again and other blood tests....she said it was a waste of time and that my thyroid result from 6 months ago was fine! I explained that anxiety feelings were getting worse because of all my symptoms. She didn't even look at the list!

    She agreed that the symptoms were firbro related and that having blood test would not help the symptoms go away....maybe she's right? She wants to put me on Paroexatine on a low dose to try and break the pain signals, but I've just looked up the side effects and there's no way I'm taking it! I couldn't tolerate amitriptyline so I'm scared to take anything else.

    What's really strange is that having been to see her I feel less anxious....maybe some sort of talking therapy may help? Who knows??

    Yes, cranial is good, but expensive...I've found a lovely young osteo who gives me a discount and only charges me once a month when I go two or three times a week sometimes!! I think I'm a project for her and she's determined to sort me out....just a lucky find I think!!

    So, there we go....still need to decide what I'm going to do!

    Hope you have a reasonable nights sleep,

    Good night,

    Debs xx

  • Hello Honey, sorry today didn't go as well as you would have liked. Have you considered seeing another GP at your surgery, it might help to get a second opinion especially if you are not happy with the treatment you are getting.

    Failing that speak to your current GP about your concerns for the medication you have been prescribed to see if there is something else that would be more suitable for you.

    Hope this helps and I hope you feel more reassured soon.

    (((hug))) xxx

    Libs

  • Hello Libs, thanks for your comments :)

    I'm going to speak to the GP again and say I'm not happy about the meds....

    Thanks again

    Debs xx

  • That's a good idea, please let us know how you get on Honey. :)

    My pleasure! :) xxx

  • Hi honey67,

    Thanks for keeping us posted. So sorry that it didn't go as well as you'd hoped.

    You say you feel less anxious having spoken to her (even tho' she wasn't really all that helpful!) which makes me wonder whether you might feel you would find CBT helpful or some other form of counselling? I had a course of CBT about 3 years ago now and the therapist was very helpful and I had a good rapport with him. Trouble is the sessions come to an end and you are back on your own again!

    I had to push to get a referral for CBT which, in itself, was stressful but it was worth fighting for. My husband always attends appts. with me and I think that helps as he backs me up whereas, as a woman on your own ( as I used to be) some people feel that they can ride roughshod over you and I am not a pushy person so that used to happen a lot. I don't know where I'd be without my husband to support me.

    I don't know if you have a partner or someone else who you would trust to go with you to help you stand up for what you want. As Libs says, above, perhaps you could see another GP?

    Amitriptyline didn't agree with me so I am on a different anti-depressant which seems to suit me. I haven't heard of the other med. which you mention.

    The cranial osteo. sounds lovely. How nice that she is helping you without charging you a fortune. It is good to know that there are some kind people about.

    Good luck with whatever you decide to do and keep in touch with us.

    Love and hugs Saskia XX

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