I'm new here...scared and in pain- lupus

I've been diagnosed with polymorphic light eruption ( ple) lupus ( sle) and chronic fatigue/pain syndrome ( cfs ) I'm 35 years old...over the last 5 years I've noticed a considerable loss in energy and increase in aches especially at night time where my arms and legs are so painful it reduces me to tears. I take hydroxychloroquine , prolonged release Tramadol, amitriptyline, ibuprofen, and paracetamol... I find it so frustrating, simply walking around the shops I end up limping or having to sit down...my legs sometimes buckle underneath me on the other hand when I'm having a good day I play ball games with my children and I'm fit as a fiddle...until a day later or that night when my body tells me I've over done things...my specialists tell me to take the tablets although they make me woozy and light headed as it is the lesser of the two evils. I regularly feel faint and have had to cut down my work load massively. I've bought a blood pressure monitor and it shows very high at night and very low in the morning which is in keeping with the pain and faint feeling. I'm so frightened I will have to use a wheel chair soon...does anyone know of any ways to help with the night time pain... I have started to get up and watch TV in an attempt to distract myself I also use a massage/ vibration pad and hot water bottles to numb the pain but I'm so exhausted through not sleeping for so long....all ideas welcome X

9 Replies

  • Hi welcome reading your letter brings back so many nightmares of my experinces .I experence night pains and ache joints i have been going to a pain clinic for over twenty years it helped so much .but of course the nhs are not willing to fund it after december classed as alternative therapy ..at the docters tomorrow to see what they say not holding to much hope tho ...good luck keep fighting keep strong lusten to your body ..and please be careful wirh the hot water bottle can leave perment scarring i know my back is not a good luck ..keep smiling x

  • Twenty years!! :-( I was not aware of the issue with the pain clinic can we do anything maybe petition against it?

    Best of luck at the doctors tomorrow X

  • Hi i dont think so ..i asked got no answer cost to much money to run ...docters ok what i expected back to square one ..testing me for everything via blood test ..and sending me for a bone scan and to rumetology (dont think its spelt right ) so wait and see ????? Just feel like here we go again ..xx

  • Try d-ribose for the fatigue/associated pain (might not help with pain not associated with fatigue) - this is prescribed for CFS but you can buy it too. It's changed my life xx

  • My feeling is that your treatment plan needs to be reviewed, because although I took them for years, prescription pain killer analgesics & NSAIDs never did much more than make me woozy, and when I was on hydroxy and still having somewhat similar problems to you, my drs & I did review my treatment plan. (I know how scary that wheelchair thing can be: I was told at 30 that I'd be in a wheelchair by 40...am 60 now and so far no wheelchairs in my life except several years ago before my lupus (re) diagnosis I did use them during flights to/fro the USA to see my family!).

    Am guessing you're taking a full 400mg hydroxy dose per day, and am imagining you are/have been for some time trying to conscientiously do all the usual lifestyle management stuff

    Suggestion: when your symptoms seem to be relatively worse, ask your gp & rheumatologist if you can stop the pain meds and try a low dose pred taper (eg 10 mg tapering weekly by 2.5 mg for 4 weeks). See if you respond well to this taper.

    If you do try my suggestion, and respond well, but your symptoms return to previous levels after a while, talk to your gp & rheumy about trying an immunosuppressant. I'm no expert, but last year I followed this route and am now, at 60, feeling better than I have since the 1970s on 400mg hydroxy+20mg amitrip+1000mg mycophenolate cellcept daily with up to 3x10mg pred tapers per year as required. But I continue to try to continue to comply as diligently as I can with the usual recommended lupus lifestyle management regime.....as diligently as I comply with my Rx treatment plan....of course, I'm not "cured", and I have to be careful, but at least I've got more of a life back (for the time being! Who knows what's next, with lupus & co....I feel this could just be I'm just having a "lucky patch"....but I try not to be negative....)

    Take care XO

  • Hi,

    Wanted to say please, please be careful with water bottle (comfort relief). A friend of mine suffers a different painful illness and has used water bottles... she has scorched herself and awfully scarred!!

    Would you be so kind as to let me know the behaviour of your plea? I have a severe light skin problem. I also have slight skin problems over brow of face (diagnosed CFS/ME & FM). Wonder if should get re checked for Lupus.

    Its hard on better days not to overdo things and suffer after hun, try and pace if pos.

    Poor sleep is such a vicious circle. Have a warm drink before bed, make sure you've relaxed for a couple of hours before bed. Lack of sleep is a real issue and just exhaustsmore (you know that of course). I point blank refuse to get up and find eventually drop off again.


  • Ah honey I really feel for you. I'm 31 and have similar issues though my diagnosis is limited scleroderma with a lupus overlap and fibromyalgia. I totally relate to being able to run around with kids one day and the next barely get down the stairs and I often fall over for no reason. I honestly thought I was going mad! i am so weak at the moment, I can't stand in the shower and have to dry my hair with regular intervals and I worry all the time more about the impact on my young children than anything else. I start treatment this week which should be an interesting journey. The way I see it I'm not housebound or in a wheelchair yet so I am gonna do what it takes to fight fit. I've demanded alternative therapies - Physio and occupational health so they are meeting with me next week. i've met with my sons teacher to put strategies in place that they bring him to me after school rather than me get out the car etc...

    Stay strong lovely, own your illness but don't let it own you.

    Chin up :).

  • My BP goes up when I'm in pain as well. It's okay to overdo it a little when you have a good day and play ball with your kids! Make sure you rest when you can and take your pain meds on schedule, even when you aren't in that much pain. Keeping them in your system is essential! Find out what time frame it is for your pain meds to take effect and make sure you rest during that time or they won't be as effective. It does make a difference if you've eaten or not! I lay on the couch on my heating pad (RA in my spine, neck, and hips) and put my legs up on the armrest above my heart. Stay there for at least 20 mins. Btw, I'm 35 as well! I have SLE, RA, Sjogren's, and severe FMS. If you'd like to chat and share stories, let me know!

  • Thank you all I've taken notes of your suggested alternative meds ready for my next appointment, I will also be careful with the hot water bottle I am aware of the scarring risks but sometimes the comfort means more, but thank you for your thoughts and sharing your experiences with me, it's nice to know I'm not the only one but also feel so sad for all suffering as I wouldn't wish this on my own worst enemy.


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