Hello - can you help?

Hello I'm new to this site. I have had Lupus for a few years now but I'm now thinking that I might also have Fibromyalgia. I have asked to see my doctor to talk about this. The last time I saw my Rheumatologist in June he told me my blood tests showed negative for lupus at the moment - and I asked 'why do I feel so ill then?' I didn't really get an answer.

The initial symptoms that got me a diagnosis of lupus were: face rash, sun sensitivity, joint pain, brain fog, fatigue and a positive ANA blood test. I didn't react well to the lupus drugs so I opted to manage it with acupuncture, anti-inflammatory diet and pain killers, which has been reasonably successful.

The year after the lupus diagnosis I started to get burning pains in my arms (tendons?) around the joints and in the muscles that made me feel weak and stopped me from working. I also have had nerve pain like electric shocks in my chest. When I flare I also get tingling (like nettle rash pain) all over my skin - and stabbing sensations like I'm being pricked with pins. I also suffer regularly from a stiff neck and headaches. The burning pains are now all over - around wrists, elbows, knees and feet, and I regularly get bouts of feeling like I have the flu, with all over body aches that put me in bed (up to 2 weeks every month since Feb). The pain and fatigue is really getting me down, and I feel pretty low much of the time. I also lost my father a few months ago to a horrible disease which was distressing to watch so I think I also need bereavement counselling.

How do I go about getting a diagnosis for Fibromyalgia? I know it is common for lupus patients to also get Fibro. How do you manage the pain and the feelings of depression? I have just started a drug called LDN from a private doctor and so I'm hoping that as I increase the dose I will feel some relief (you have to increase slowly). Are any of you also on LDN? Thanks for your help!

8 Replies

oldestnewest
  • firstly welcome to the group. so sorry your in so much pain all of us on here are the same so we know what your going through. ive only been diagnosed for 2 weeks myself but ive had loads of great help and advice since joining this group they are a lovely group of people and will do all they can to help you. im a long time chronic pain suffer and while seeing my consultant about my arthritic hip I mentioned all the other pain I was getting like u said I felt like I had the flu with out the cold my whole body hurt, he referred to a rheumatologist as I had to wait 3 months for an appointment I went private it only cost £180.00 for the consultation and he diagnosed me straight away after 30 years of pain it turned out it was caused by an accident I had when I was 10 years old in gymnastics. im now going for blood tests scans and I have an appointment for the pain clinic all in 2 weeks. I don't know if ive helped at all but I hope you find the answers ur looking for god bless and keep your chin up.

    p.s listen to your body only do what its capable of doing then rest if you over do it ull find your layed up for longer. good luck

    eve

    xxxx

  • It sounds like Fibro so I understand where you are coming from. Welcome to the site and I hope you find some relief from your pain. I only been on site for a few months but I love it! There are many of us that have Fibro for many years 40+ myself. We try to stay positive as we can. We may joke around about many things including Fibro. It is my way of stay positive. It seems like if I stay positive my pain is not quite so bad. I have other health problems that keep me in pain. I was born with broken hips so I really don't know what it's like to not feel pain. I do what I can when I can and try really hard not to overdue it. I take lyrica and Cymbalta along with muscle relaxers and other meds for different problems. That's me. I truly care about others on this site and would love to meet many of them in person. I live in the states so medical treatment is a bit different here. Soft hugs and good thoughts to you.

  • Sounds like my symptoms hun, maybe ask to go back to see them again? Or gp can diagnose?

    I take amitriptyline and cocodamol and vitamins makes life livable.

    I tend to get low when my arms are really bad! Stops everything in my day to day life. But it's just part of life now and have to try and keep smiling.

    I'm sorry your in so pain and hope you find relief from the med's.

    Love keeley x

  • hi keeley

    nice to hear someone talk about there arms

    ive got fibro all over but the worst thing i think is my elbow pain and associated weakness i cant pick up my porridge plate as i cant support it or hold on to it as the pain is excruiting . my hips ache my feet ache knees shoulders etc but the elbows drive me nuts . i jjust dont want tomove at all sometimes as its all so painful joy i know its not life threatening but it wears you down . i only take paracetamol now as i had a bled due to others . doctors like well youve got fybro so live with it and every thing i get its put down to fybro . wish i had a monitor on my head that states pain levels as people dont get it .and expect you to do all the normal stuff when even cleaning my teeth is painful re elbow pain take care caroline

  • Yep I understand that, holding a piece of paper can hurt :-(

    The doctor should give you stronger pain relief he doesn't sound very understanding at all! Bless you x

  • I am so genuinely sorry to read that and I would discuss this with your GP and ask for a referral to a Rheumatologist. I want to genuinely wish you all the best of luck.

    Al my hopes and dreams for you

    Ken

  • Thanks for all your kind words. I like all your strong positive attitudes to the illness here, it's very refreshing :) I will keep my chin up and ask my GP how to get a diagnosis.

    Thanks again. x

  • i too am sorry,

    and I too am new to this site. so to a newbe to another...welcome.

You may also like...