New to all this - hello!

Hello

I have literally just been told I have fibro as it is the only diagnosis left. I have had IBS , anxiety and general pain for years - last year I developed plantar fascitis and generalised tendonitis around my body and limbs. I ended up in hospital as I couldn't move my neck due to the intense pain and they thought I had a clot in the vein in my neck - very scary. I have had a frozen shoulder for about 8 months; hip pain, elbow and knee pain - not to mention needle like hot pain in fingers and toes and really thought that it was all psychosomatic. The GP was not listening and I began to feel that I was a fraud and that this was all in my head.

Whilst quite shocked to be told that I have fibro (I have not come across it before) it is a bit of a relief to know that I am not going mad!

I will start on amytryptilene tonight which is a worry as I have to get up early for work but let's see what happens

You seem a friendly and supportive bunch out there and to be honest I could do with some support - I think my family are sick of listening to me - I am sick of listening to me! Hopefully now I know what I am up against it will help.

I hope you're all having a good day out there

Hilary

12 Replies

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  • Hi Hillary. Like you I have just had the same news which was devastating. Was given some nortriptyline and told to get on with it. My family to are sick of me complaining and so is my doctor who is very dismissive. Fibromyalgia has caused lots of family friction but people don't understand what it's like

    Chris

  • Hi Chris

    Pretty similar to my experience. GP told me today over the phone that this was the diagnosis as everything else was negative and symptoms getting worse- collect the script and get back to him in a month.

    I just think my family is fed up of me moaning about pain and not being able to go out and about because I am tired or in pain or both

    Let's hope our meds help and that we both start to feel better very soon.

    Stay in touch and we can compare notes!

    Good luck

    Hilary

  • Hope they work for u Hillary. I have little faith at the moment unfortunately wich makes it worse. I walk 3 or 4 miles a day which gives me relief for a short time but usually suffer when I go to bed. I take a sleeping tab which I take when I wake in pain which gives me an extra few hrs rest. May be something u could look into. Chris

    Keep in contact please

  • Hi Hilary

    So sorry you have had to deal with all of this - I guess I am lucky (sorry!) in that I have found a fabulous GP . I did change form my normal one who was ok but didn't really listen. Maybe there is another one at your surgery who could be more in tune with you? And don't think that amytryptilene is the only option: You will probably have been put on a very low dose so hopefully it won't affect you waking up ok. Lets hope it works for you but if it doesn't do go back and ask for an alternative plus something for when the pain gets really bad. And try nice warm baths with magnesium salts (Epsom or another branded one) - they have helped keep my everyday pain enormously. Really, really have helped a lot.

    I think after being diagnosed about 6 months ago I have found it to be a bit of a bumpy ride to find the best support, including meds that suit me. And I am still open to new ideas and so is my doc. So keep on asking for what you need from the medical profession, from us and from your F&F. You deserve to be nurtured and supported.

    Ann x

  • Hello Hilary

    I just wanted to wish you a very warm welcome to the forum :)

    I am sorry that you have so many symptoms with your Fibromyalgia and I can truly empathise with that.

    I have lived with Fibro & ME for 36 years. The pain really does get me down at times.

    Something that is quite important with Amitryptyline is that you take it around 6pm. Don't take it just before you go to bed.

    Many people when they start on this medication have a "hung over" feeling the next morning.

    By taking it around 6pm it does seem to stop having that awful feeling the next day.

    Once again a very warm welcome and I look forward to chatting to you again :)

    Wishing you a peaceful day

    Lu x

    Administrator

  • Sorry I was reading about getting a referral to a pain clinic. I waited 4months for an appointment only to be told on the day that my symptoms were to complex to deal with. They did not offer any medication to help with the pain and said they would send me to a fibromyalgia specialist. After waiting another 2 months heard nothing so I went private. I think even the nhs have difficulty in dealing with fibromyalgia and the effect on the individual and three families. I won't name my location but recently it was on the news that a fibromyalgia sufferer jump off a cliff because he wasn't able to get pain relief. Gp's don't recognise how this ailment effects people mentally and physicallyin severe cases

  • Hi

    Thank you all so much for your comments and advice. I am so pleased to find this site and support system. I will let you know how I get on with the new meds!

    Hilary

  • Hello Hilary and a warm welcome to our friendly fibro forum where you can find help, advice, support and understanding along with a chuckle or two to lighten the day. Our mother site fmauk.org has a wealth of information including guides and links.

    You probably have mixed emotions right now, relief at having an illness you can put a name to and uncertainty at what this diagnosis holds for you in the future.

    It is a normal reaction and can take time to accept that whilst your symptoms can be helped, there is no cure as yet unfortunately.

    I suggest you ask for a referral to a Pain Clinic in order to manage your pain which is generally very helpful.

    If you feel that your doctor is being dismissive of your concerns then I advise you to change to another in the practice.

    Looking forward to seeing you around the forum.

    Kay

  • Hi there hf1981 I would just like to wish you a very friendly welcome to our group. I am sure you will find loads of help and support from our great members their the best on the net. I hope you will also make some new friends along the away. Please feel welcomed xx

    Mo

  • Hello and welcome. I'm on amitriptyline and take it at 6pm to avoid the morning hangover effect. The down side is I'm going to bed at 8 as the amitriptyline has kicked in by then.

  • I love your mind set. Go girl.

  • Hello Hilary,

    I joined this group a few months ago and whilst I haven't contributed much so far, I do appreciate the daily digest each morning. Along with finding out new information, I get the occasional smile and it's comforting to know there are others out there who understand.

    Your words "a bit of a relief to know that I am not going mad!" really strikes a chord. When I was diagnosed, following years of being unwell and tests showing nothing wrong, the consultant reported that had been my response in his report to my Gp. Issues re. fibro fog muddles still worry me; but atlast I know there is a reason for it and that the pain & other issues really do exist.

    18 months on, sadly I'm still juggling the amitriptyline dose which I take around 7pm. By 10 I can't stay awake, but I'd so love a sleep where I'm not wide awake again in the early hours and feel like I have actually rested. One day...

    I hope your experience of taking them helps. Good luck. Ali.

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