At last!

I finally feel like I'm getting somewhere ๐Ÿ˜€ After seeing the doctor for the blood test results and having to argue once again that I'm not depressed (AAAAARRRRGGHH! ) I stood my ground and insisted that I am referred to a specialist. Eventually the doctor agreed โ˜บ Then I had a call on Friday from the surgery to let me know my vitamin D levels are low after all, so I began taking fultium D3 for that yesterday. I know it will take a while to feel any difference but it's a start. Another plus is my recent flare is definitely improving! ๐Ÿ˜€ feeling much better than I have been for the past couple of months , long may it last. Woohoo! !

15 Replies

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  • Well done you for perservering, good luck :) xxx

  • That's very encouraging to hear.

    My bloods showed I was deficient in foliate and I've started a supplement for that.

    I always think it's such a shame that we have to constantly tell our GP's that we know our own bodies and that usually our intuition is correct. Well done for your perseverance.

    It's great to hear you're feeling much better.

    Hugs

    Lu xx

  • Thanks Lu, I agree with you regarding us knowing our own bodies. It's a shame that it's taken over 20 years to get this far though. ๐Ÿ˜ž Onwards and upwards eh? ๐Ÿ˜†๐Ÿ‘

  • It took me 30 years to get my formal diagnosis. A locum doctor diagnosed me when I was 20 but it was rubbished for 30 years. I was constantly told my pain (and loads of other symptoms) were depression.

    I do suffer from depression, but it doesn't cause me pain.

    It never fails to annoy me that a hospital consultant diagnoses us, but only certain GP's believe our illness exists. How does that work???

    Sorry. Rant over ๐Ÿ˜Š

  • I think you're entitled to a rant Lu, that's terrible! Sadly it seems to be a common story though. The gp I saw actually told me that a lot of professionals don't believe fibromyalgia exists and that a diagnosis won't be helpful to me ๐Ÿ˜ฎ Surely we, as the sufferers should be making that decision, not them? I'm lucky enough that I have periods when I don't have too much pain, as long as I am very careful and pace myself well. But there are times, like recently when the fatigue and pain takes over my life. If I can get help to ease those symptoms with a diagnosis then I want that diagnosis! And I'm beginning to think about the future too, this has been getting worse over the last 4 or 5 years, what if it continues to do so?

    My rant over! ๐Ÿ˜

    I hope your new supplement makes a difference Lu, take care xx

  • If I'm perfectly honest with you, my formal diagnosis has actually made life worse for me. In my case, the GP you saw was correct.

    Health Professionals make assumptions about people with Fibro. Unfortunately I have had to have many procedures and operations over the years. This has meant many trips to see my GP and in the end being justified every single time, that my problems have been very real.

    For example I went many times to see my GP complaining of pains in my side and feeling very sick. After many months I saw a consultant who decided to remove my Appendix.

    After my operation I was told that my Appendix was covered in lesions. The consultant said I'm surprised you haven't had more problems!!

    I digress โ˜บ๏ธ What I was trying to say was that I've seen more than my fair share of Health Professionals. The majority of them are so badly misinformed about Fibro and they also are completely unaware of how some of us also have a multitude of other health issues that are Fibro related.

    I have constant, non stop, burning gnawing bone deep pain. I saw a different GP at my practice recently. She said 'oh yes, you have achy joints don't you". Achy joints??? Have any of my GP's actually written on my notes how much pain I'm in, or do my notes just say Hypochondriac even though I have a diagnosis?

    I'm ranting again ๐Ÿ˜. Sorry

    Take care of yourself xx

  • Do you think the GP would have looked at your symptoms differently if you hadn't been diagnosed with fibro? I have been thinking about what the gp said and can see where she's coming from. Like you I've suffered depression in the past and feel it's the first thing that they latch on to no matter what you go to see the gp for. I fear that like depression fibromyalgia will have the same effect. .......a label ๐Ÿ˜• It's a worry but I need answers ๐Ÿ˜ฎ

  • To be honest, yes I do. I have urge incontinence, IBS, insomnia, etc. They've all been put down to depression. I've spent 30 years urgently needing to pee. I have at long last seen a Urologist. Problem solved by one tablet a night. That simple.

    However, I completely understand your need for answers.

    Have you been referred to a Rheumatologist now? xx

  • The gp didn't think it's rheumatologists who diagnose fibromyalgia in Scotland for some reason, so she was looking in to it and calling me if there was a problem. That was on the 3rd and no phone call so far so I'm giving it another couple of weeks and then I'll check with the surgery if I haven't had a letter telling me the waiting time for an appointment. That's how it works in Fife.

    I've had IBS and an overactive bladder for 30 years, thankfully no incontinence though. I did start meds for the bladder problem but it aggravated the IBS so had to stop ๐Ÿ˜• I'd rather pee frequently than suffer the pain of IBS every day ๐Ÿ˜€

  • Hi

    I'm so sorry I haven't replied. I have been quite poorly, think I am improving, then go back down hill again (apologies, I'm feeling a bit sorry for myself).

    At least it sounds as though your GP is on the case.

    Out of interest, do you know what meds you had for urge to pee? I was prescribed a medication that is usually used for men. It has changed my life. When I go somewhere new I don't have to seek out where the toilets are before I do anything else!

    Luckily I haven't had any side effects from it and it has stopped me having constant UTI's which are just awful on top of Fibro xx

  • Hi Lu, hope you're feeling a bit better today and that you have someone to make you feel loved. You can't beat a hug when you're feeling sorry for yourself โ˜บ I can't remember what it was I took for it, I couldn't even finish the first course. I empathise with regards to the UTIs, my husband had a really bad few months with them last year and I had to phone an ambulance on Tuesday night because when I came home from work he was in agony, unable to move from the edge of the bed. It turned out to be a bladder infection! I've never seen him in such pain before, he was shaking, soaked in sweat and breathing as if he'd climbed a mountain. Luckily the antibiotics kick inwwithin a couple of hours โ˜บ

  • On a more positive note, I had a wee walk down to my mums tonight instead of the usual hot bath and jammies straight after work. She decided to build her firepit which she bought around March! It was like a comedy of errors. First we couldn't get the nuts to go on, then she had me putting a leg on back to front and when we finally got it built her lighter wouldn't work! ๐Ÿ˜‚ we did manage to get it lit eventually and succeeded to get covered in ash and stink ourselves and the whole street out with smoke! Hahaha! Trial and error is what I say! Next time will be better. .........assuming we get some decent weather up here! ๐Ÿ˜

    Take care Lu

    hugs, Sharon

  • I am absolutely delighted to read that your stance paid dividends, and I want to sincerely wish you all the best of luck with your fultium D3.

    All my hopes and dreams for you

    Ken

  • Hi All! What a battle for you all to get help and relief from pain. I have been so fortunate to have had a GP when my Fibromyalgia started following other ailments that has been rearing their heads. Her advise was to try Alternative medicine before she referred me to various Consultants for the Health problems I had. This was because I did not want to start taking a cocktail of drugs that may or may not interact on each other and cause more problems than I had. After discussing the various disciplines in Alternative Medicine. I decided to contact someone who I had met 5 yrs previously who had trained in the original Traditional Chinese Medicine and Acupuncture. I have been attending weekly for the past 5 yrs and have acupuncture with nutrition advice and sometimes a course of herbs. This is alongside the western medicine that the Consultant prescribed for the pain. Duloxetine 60mg. During this time my heart problems have been kept in check as has the different problems that come with Fibromyalgia. I have reduced my Duloxetine to 40mg. If I get breakthrough pain or any new problem it is dealt with in the treatment I receive. This way of management has given me my life back. 2 yrs ago I couldn't lift a pan off the cooker but I can do that with no problem now. The register for this form of TCM is Edited By Admin I can assure you that if you are prescibed herbs it is only plants and there is nothing in the original form of TCM that involved animals. It is a gentle progression and takes time. There is a book written Curing Fibromyalgia with Traditional Chinese Medicine. I haven't read it but did see it on Amazon once. Apparently the other forms of TCM have been altered over the years by superstition, culture and looking for quick fixes. This is my experience of help. My GP always gives me a copy of any blood results or tests to give to my practitioner and I keep a daily food diary and brief outline of what I have done through the day. At the end a list of any pain or problems I am experiencing. I don't know if this helps any of you but I am so Thankful that I was advised to go down this path instead of lots of drugs that can cause all sorts of problems. I can't do everything I used to do without it bringing on pain or Fibro Fatigue but that is stepping outside of my limitations. I know what I can and can't do and yes I know it costs but What Price is Health and a Life. What it costs weekly is less than people spend on a night out or on a nicotine habit etc so I have no qualms in spending the money. Pain or no pain, Sleep or no sleep, Life or no life just sitting in a chair. I hope this helps someone somewhere. God Bless you all!

  • that's awesome. I wish I could stand up to the doctors and not leave without being referred!!

    you're a hero!!!

    xxx

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