Fibro or lupus

I saw my osteo surgeon the other day.i have had osteoporosis and osteoarthritis for some time.i had several operations on my knee including vpartial compartments and finally a full knee surgery has failed,i am in pain 24/7,masses of drugs including morphine and gabapentin.the surgeon has looked at my case notes and thinks lupus is possible as I have recently had pancreatitis.ii have had really bad endometriosis resulting in radical hysterectomy.horrendous fatigue.dead right leg on and off.bad chilblains,l'hermittes.bad circulation.jerks.travel sickness,odour sensitive.occaisional chokes.r really bad joint pain,feel like been run over several times by a truck.d expression brain fog.pins and needles in body,meralgia paresthesia., trigger finger,c chronic reg pain syndrome,IBS.nasal drip,plantar fascilitis and on and on.i am basically confused!! please,if anyone has had time to read my lengthy memo and could share what they think.(I have no butterfly mark).your time is very much appreciated.

21 Replies

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  • So sorry you are suffering so. See if you can see a rheumatologist. ((Hugs))

  • Thank you x

  • I have both Lupus and Fibro.

    Lupus affects my joints being swollen, problems with my eyes, joint stiffness, terrible mouth ulcers and flare ups every 6 weeks where my glands come up and I am so exhausted, with fever symptoms, where I shiver then become hot, I spend time in bed. Blood tests can confirm Lupus. Lupus affects the organs, mine are kidneys, liver and chest/breathing problems.

    Fibro means my body hurts if any pressure is one it, or I try to open doors etc. Lying on a bed hurts and my shoulders in particular hurt so I have problems sleeping and have to take pain killers. My joints all hurt and this also makes me very tired.

    Since I changed my Lupus specialist for being rude and ignoring my emergency into hospital affecting my kidneys, my new one (who reports to the other) says it is all Fibro, not true as they are different, both painful and exhausting but with other defining qualities.

    Hope this helps.

  • Thank you ,it does help especially as I mirror both.i recently invested in a mattress topper which is helping a lot with joint pain especially elbows and shoulders not so with my back.t he door thing..I thought that was just me being a wuss and feeling sorry for myself.i am full of chilblains at the moment making me a little irritable.i have so many ailments it is do good to hear from othersi really feel for you with your consultants must be very trying.i do get a bit wound up when peeps day 'just' fibro there is no just about it.i really hope you get listened to soon.x

  • I changed to a memory foam mattress and it made a huge difference.

  • Hello,

    I am sorry to hear that you are experiencing all these issues. It must be really stressful and tiring for you to have to deal with so many ailments. If you and your surgeon suspect lupus, you might want to see your GP and ask to be referred to a rheumatologist for further tests.

    You might find having more information about lupus useful and you can request an information pack here lupusuk.org.uk/request-info... on our website as well as have a look at various other leaflets we provide about the condition lupusuk.org.uk/publications/ including a leaflet on the symptoms and diagnosis of lupus. lupusuk.org.uk/wp-content/u...

  • Many thanks I have read bits on line some I match dome I don't very internet typical,iwill request the info you suggest when I go on my laptop.many thanks

  • Many thanks,i going to ask to see a rheumatologist as it is 5 years ago when fibro was diagnosed,after all the support I have received from everyone I am inclined to think no to lupus,i don't really get fevers I get a body shut down sort of thing no organ trouble,however have pancreatitis and have a rattle in my chest,never smoked and extremely tender skin we tend to forget skin is am organ.many thanks for all your help.x

  • Many thanks.will contact my GP to see if she will arrange as about 4 or 5 yrs since I saw a rheumatologist.x

  • Sorry to hear all that you are going through. I have been diagnosed with both and it can be very confusing as to which condition is causing which pain. The doctors tend to do bloods to check if the lupus is flaring if not blame the fibro. There is a blood test for Lupus make sure that you Ask for it, once diagnosed there is meds that can be helpful.

  • Thank you so much for taking the time to reply.I had been led to believe there isn't a specific test for lupus.i will push for a test

    Thanks again

    Alison

  • there isn't one specific test for lupus, but alongside all of your symptoms a double stranded DNA and ANA blood test could help confirm a diagnosis. Seek help from a rheumatologist. Good luck 😊

  • Many thanks,we have a terrible GP service.we have to phone for a telephone appointment which can be two weeks away or a face to face which you have to fight receptionist for and that is a month away but I will start the process on Monday,thankyou.

  • Is the test for lupus an Ana test?

  • Hi there,

    You can find more info on how lupus is diagnosed here lupusuk.org.uk/diagnosis/

    Lupus is now almost invariably diagnosed by blood tests. One

    of the most typical features of lupus is the presence of particular antibodies in the blood.

    You can read more about this in the ''Lupus blood tests'' section of this leaflet lupusuk.org.uk/wp-content/u...

  • I was diagnosed using ANA and DNA. Hope this helps

  • Really sorry to hear of your problems. I can sympathise as I too have many of them now. I had osteoarthritis in my spine thought to be from childhood scoliosis. I was operated on six years ago and my problems all started after that. I've been diagnosed with fibro but really think it could be something more. I'm so sensitive to perfumes and chemicals, allergic to everything now. The jerks and twitches I can really relate to along with nerve pain, numbness etc etc. my spine surgery failed too. Have you been tested for allergies? X

  • Hi,thank you for taking time to reply.i haven't been tested for allergies I have a great GP so I do trust her call on things.i have not gone to her with everything as I feel like a hypochondriac.o have been up in burning pain in my back and knees hips and elbows,i choke,i let out weird grunts,t here is no end to pain

    When I just read a ladies post with lupus it broke my heart what she is going through and made me think nope I haven't lupus then when I read more I thought maybe I do,maybe like fibro different experiences.xx

  • I am very similar lots of pain problems but have reduced or stopped the heavy analgesics.

    I feel better for doing that and I'm trying to put the pain back in the box.

    I have limited mobility and get exhausted after doing very little.

    Keep your chin up.

    Join the "I don't know what to do with you " club. X

  • Thank you do much.it is helpful just to hear from others.i have a very small family and have lost friends due to having to give work up and moving from the north to the south.m y husband did the same as you and I can see the difference.i keep trying but my will power must be rubbish the pain and horrendous aching kicks in and I reach for the meds.i have had a lot of sugery and walk with a huge limp,dragging my self so look a bit like Quasimodo.agan. Thank you.x

  • I limp and now hate shopping but I sit and ride round ASDA or Bluewater and enjoy not being exhausted.

    I'm sorry that you are in a new environment and have limited sounding boards X

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