Frustrated with pain


I have recently been diagnosed with fibromyalgia .I get widespread pain in muscles like burning pain. Feels like i have been hit by a car ...all my tests are negative .I was also diagnosed with Lupus 4 years ago and still on HCQ200 mg. I feel so exhausted and sleepy all the time.I can't walk long distances and I get short of breath.My pain gets worse at night when I am trying to sleep.I have tried so many pain killers but none seems effective,finally I have been referred to the pain clinic.I am so depressed and have been referred to community mental health team as well,however,life still seems very dark and I get negative thoughts most of the time .what is most frustrating is that people around me just don't understand what I am going through .Also,I have noticed forgetfulness and confusion.Anybody having similar symptoms????any experience with pain clinic????

15 Replies

  • Hello and welcome

    Hi ayesham

    Lovely to have you here you will get a support from members and our admin.

    Please do take s look at the homepage and the pinned posts.

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    There is a wealth of information available both points.

    Please do share with others it really helps.


  • I personally haven't experience of pain clinic but others have. Im sure you will get a lot of response.

  • Hi ayesham

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

    I am so genuinely sorry to read this, and the symptoms that you have described do match that of Lupus? As shortness of breath is not a Fibro symptom. I have pasted you a link below to the NHS Choices cache on Lupus symptoms:

    Your shortness of breath concerns me in case it is not Lupus related? If this persists or gets any worse please seek medical attention for this.

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you


  • I really hope things pick up for you. Have you tried having a hot bath with a teacup full of Epsom Salts ? They are the only things that give me a relief from pain and I really can't praise them enough. I know of many people who have reason to be thankful for Epsom Salts. I buy a large box of them from Amazon and they are not expensive. Very good luck to you.

  • I've tried Epsom salts, but no luck, the Bath just made me feel faint and exhausted, still so much pain any other suggestions? Xx

  • I'm afraid not, except be kind to yourself and wait for the sun to come out !

  • Hello again, there is something else you might fancy but its a bit obscure and might not be to everyone's taste. I like to write short about any number of things and am part of a writers group in my home town. I find it restful while keeping my grey matter working. I've managed to write short stories that I'm really pleased with. Anyway, it was just an idea and I really wish you well in the future.

  • I can also recommend the Epsom Salt baths. They are a new idea to me but they do help to ease the pain.

  • Hi there ayesham you sound as if your really struggling at the moment i am sorry to hear that. I have been to the pain clinic a few times over the years. Unfortunately for me I did not find them very helpful. But that is not to say you wouldn't. There is no harm in giving it a go if you can get an appointment.

    Like TheAuthor I too am a little concerned about your breathing. Have you spoke to your doctor lately about how you are feeling and your breathing problems? I would urge you to make an appointment to speak with your GP and not just assume it is your Lupus.

    Plus if it is Lupus your medication may need looking at to make sure it is up to the required dosage. Do you use an inhaler ? You may need one if you don't. Only your doctor could tell you that so please pay him/her a visit and let them check it out for you. Please let us know how you get on.


  • Hi yez i have all them smptons all part of fiboxme .i need a schooter now .you just have to take things alowly past yourself rest more stay away from atressfull situratiins. I all so cant be in company to long . As my energys go. As so lound noices .

  • Hi i have a similar thing often my pain isn't at the time but later on.

    I get breathing issues now on Folic as they said low how long been low? have to wait to see how i get on with it but i have peanuts often which have folic for one!

    Part of the breathing i found is that the muscles are tight like lungs don't want to expand rather than not working as in blocked as my sats are ok but do drop low sometimes as seen on monitor.

    As sometimes wheezing away but my bp&heart rate arn't up my quack found.

    But lungs are a muscle just like the rest as it effects eyes and hearing also.

    Confusion etc can be low folic it says but many have with fibro fog but also low folic is something with fibro Chicken and Egg?

    one of the things that came back with my breathing was D dimer/DVT which they think is something from the Raynauds!

  • Hi and welcome, you've had good advice about the Epsom salt baths, they do seem to sooth the painful muscles. If I'm feeling agitated with the pain the warmth of the water seems to help with this too. Regarding the foggy mind I do suffer with this, it seems to be part of the fibromyalgia and also the menopause doesn't help with this. I find I can focus better since I started guided meditation, they may mention this to you at the pain clinic. Go to your appointment with an open mind, the pain clinic is not for everyone but I found it helpful. I hope things improve for you and your depression lifts, I always find the sunny light days uplifting, even if it's just sitting in the garden for a bit. Take care of yourself. Furry

  • Me too, have been bed bound with the worse long term pain I've ever experienced, making me feel sick and frightened, not sure what to do, but sending love if that helps xx

  • Thankyou so much guys...I appreciate the help.I would be attending pain clinic soon and would discuss breathing problem with my GP.Also,I haven't tried Epsom salt ,would see if it helps .

    Thanks again

  • Breathlessness, extreme tiredness, pain, mental confusion, can all be linked to low B12. Have you had a blood test recently, and if you have do you know what your B12, ferritin, folate and VitD levels were?

    It could be worth asking your doctor to check these for you.

    Best wishes


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