Lupus now Fibromyalgia

Hi everyone.

You may remember that I've been feeling confused because I've been getting a negative ANA result and low ESR readings, but I feel worse and worse - I hurt all over with fluey aches, burning pains, stabbing pains, regular headaches with a stiff neck and increased fatigue. Well I have my answer at last: I HAVE FIBROMYALGIA. And the Lupus is 'currently inactive'. Wow I didn't know that could happen. But of course I don't feel any better (worse actually) because the Fibromyalgia has taken centre stage and is shouting loudly! My sleep quality is pretty bad so I'm now taking melatonin (on prescription) to help and I have a treatment plan to do 5-10mins exercise per day and build up slowly. I've been offered other pain killers too and anti-depressants. I'm still taking a very low dose of LDN too - which is helping to keep my mood level and help with the pain.

Anyway I thought you might be interested to know.

37 Replies

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  • Hi Dryad, that's aweful, double whammy, poor you.

    I feel same at moment, in pain everywhere. Keep putting off going back to doctors but I'm going to have to do it.

    Also have to call the Fybo team at the hospital but im not sure what they are offering me is going to make much difference & just make me feel worse. We plod on ☺

    Hope you feel better soon, I didn't realise you could have Lupus and Fibromyalgia until coming on the forum and saw other people have both.

    Must be a real blow having yet another painful disability to deal with. The excersize program sounds good idea, you have to try to keep moving.

    Luv Jan x

  • Thanks Jan. Yes it's a bit of a bummer getting another long term condition! Sounds like you are close to going to see the Fibro team - I would recommend it. It's a different approach to treating Lupus - it seems more about ensuring you get sleep and keep doing a bit of exercise everyday, rather than taking long term anti-inflammatories or immuno suppressants. I do feel more positive since the diagnosis because at least I now know what's going on! And if the ANA stays negative I might be able to kick lupus out of my life and enjoy the sunshine once again! I remain hopeful ;)

  • There was an active FM thread posted by BC:

    healthunlocked.com/lupusuk/...

    Might be useful :-)

  • Wow thanks - what an interesting discussion!!

  • Everything this doctor said rings true for me. I wish i had a dr like him.

  • Yes I too have suspicions that I have developed fibromyalgia as like you a few years ago I had a positive result for lupus and higher esr then only just last year my rheumy said its now only a week positive with a very low esr and he now believes I don't have lupus at and wants to dismiss me.

    However I'm still in a lot of pain especially my legs which are becoming unbearable which is getting me down as I love walking my dog, I too get stiff neck which feels like my neck glands are swollen but they are not, I can ache all over like i have the flu ,my legs are very achy all the time which lately feel so sore like I have rubbed sandpaper over the skin and also with a burning feeling (this is very new to me) does this sound like what you have? I find everything so confusing.

  • Yes! Very similar. Especially the way you describe your skin feeling burning-like. Do you get stiff and achey at night? I tend to feel terrible at night and it interrupts my sleep. I get headaches with the stiff neck and my glands come up in my neck and throat at the same time.

  • Very interesting dryad as at the moment my legs feel stiff mainly my ankles and toes I can't bend them very well nor my fingers, I do get headaches but they are mainly painful at the temples and forehead I thought it was sinus as I can feel very stuffy too but my facial muscles can really ache and again I thought it might be jaw clenching at night but once again I'm not sure because it goes as quickly as it comes.

    The thing that makes me question fibro for me is that I sleep so well as I'm exhausted all the time and really need a good sleep, I believe sleep can be disrupted for people with fibro.

    I do try and keep busy so maybe moving is good as I walk my dog twice a day everyday rain or shine and all I dream about is wishing I could walk for miles I love being out doors but the pain can sometimes get too much which leaves me feeling quite down at times.

    Im off to see a private lupus specialist on Friday at the London lupus clinic as I've been so frustrated with my rhuemy lately my husband God bless him is prepared to pay and get a diagnosis (or not) as to if I have lupus and I will definatly ask about fibromyalgia.

    Can I ask if your rheumy got out his chair and actually felt your body for fibro tender points no one has ever done that for me.

  • He didn't check for tender spots this time (he did that on my first visit 5 years ago and I had no tender spots then). He diagnosed on the fact that I had widespread pain that was constant, much of the pain is in my soft tissues around my joints (in muscles/tendons/nerves) and my ANA is now negative with a low ESR result. I don't get as much pain actually inside my joints like I used to, but it's still there. The sleep (or lack of) didn't really start for me until fairly recently - I slept pretty well until just a few months ago. I also am sensitive to foods, I get IBS and occasional burning sensations in bladder that isn't an infection (all indicators of Fibro)

    I think you can have Fibro at the same time as Lupus or other conditions.

    Good luck with the new consultant!

  • I use to have that dry, dry sore skin. Dont know why it went away, other than i am using oils on my body now. Started with sesame oil on my entire body for 3 months everyday. Leave on half hr, wash off. Helped my scalp a lot. I only have to mantenance once a week now. My skin feels good. I do use coconut oil every night. I take vitamin c twice a day to keep swollen glands away.

    hope we can find answers...feel better

  • Sounds like you found a good solution there! The burning pains for me are more like under the skin - nerve pain. I'm also thinking of taking more Vits - have you seen 'That Vitamin Movie'? That's what it's called.

  • I often wondered if there's some financial incentive for the consultant to discharge patients? Pinky, It sounds like RA.. SLE and RA tend to go hand in hand in some peeps.

  • Dryad, Sounds more like RA to me.."stiff and achy"

  • The stiffness is less in my joints and more 'all over' aches and pains. My mum has RA pretty bad, and she doesn't get the same kind of stiffness - for her it's all in her joints. Though I don't doubt that these illnesses are all inter-related - perhaps all sitting on the same sliding-scale.

  • I mean the pain is more in my muscles tendons and nerves - but with a little joint pain too.

  • Hi I have OA and was referred to rheumatology clinic to see if it was just OA found out I have Psoriatic arthritis too that can give you pain in your tendons and muscles

  • I have pain similar to what you describe, and the rheumy first thought I had fibro (I already have early-onset widespread OA and hypermobility syndrome), but an ultrasound scan of my hands showed synovitis and small erosions so my diagnosis is now RA + OA + HMS. Inflammatory arthritis can apparently sometimes trigger all sorts of inflammation throughout your body - I have had it particularly in my tendons, gut (IBS symptoms) and eyes.

  • I also have psoriasis and my eyes are dry and mouth but I go back in 2 weeks to the rheumy clinic to see the consultant so hopefully I will get some answerers I have a long list because I have COPD too and I think it is affecting that

  • I have a friend with psoriatic arthritis - it's a horrible one that. I hope you get the answers you are looking for x

  • That's how my version of RA started..things developed progressively afterwards. it takes 2-3 years before thing get more obvious. I reckon in my humblest opinion, that's when the consultant mistakenly think it's FM. In some people, lab results don't reveal much whilst it's slowly progressing without getting noticed. You think, you got better..then something else comes up..

  • Yup, that's how it has gone for me...

  • Hi Dryad....sorry to hear. I think i have exactly what you have. I seem to have switched or added to my lupus with fibro. I have bad headaches, ear pain, terrible time sleeping. (Purchased melatonin, but makes mevery dizzy. Afraid i wont wake up for work. I am cutrently lavender and coconut oil on back of neck, lower back and feet to help me sleep. I still dont sleep long,but at least i sleep deep for 4 hrs), tenderness in my toes, and heel of left foot. Pain in left calf. Tightness in the muscles on the entire right side of my back that is unbearable at times. Who diagnosed you with fibro, i am wondering?

    I am still currently using natural methods. I take a formula 303 which is from my chiropractor that people with fibro like. It has magnesium, valerian root and passionflora ( which we know is for anxiety. My anxiety has seemed to triple)

    Keep posting. Want to hear how you are faring. My symptoms are manageable as of now, buti worry that they will get worse as i get older.

  • The headaches for me start with a feeling of stiffness in the neck (with swollen glands often) and then builds into my head like a migraine. I do the heel pain - worse when I first stand up and try to walk - and what feels like burning /throbbing/tenderness in my arms and legs (shoulders) particularly around my elbows and knees - and the ball of my right foot.

    The Melatonin seems to knock me out for just 4 hours of decent sleep - then I tend to wake and toss and turn.

    I was diagnosed by my rheumatologist who knows me pretty well now, based on my symptoms, the fact that they are more or less constant over the past 11 months, and I have a negative ANA and low ESR. And the don't respond to lupus drugs.

  • Interesting....what is ESR? My ANA was negative a year ago. I cant afford to get bloodtests done too often.

    I found the melatonin didnt keep me sleeping 8 straight hours either. Probably 4 like you. I went to bed last night 10 , and woke up just before2. So frustrsting. I wonder why our brains wake us up?

    Still think its hypothalmus problem Why we wake up...very unsettling to not be able to sleep thru the night.

    I think my hypothalamus is not working properly. I also have a hunger dysfunction. I have no appetite.

  • ESR is the inflammatory marker in the blood. Normal level is somewhere around 10-15 and I usually got readings of 22-30 when my diagnosis was Lupus. I now get readings of 7-11 which is low.

    Where do you live Natura? If you live in the UK these tests will be standard from your GP or consultant.

    I think sleep problems can also stem from exhausted adrenals, which I know I have a problem with. Hard to find the 'off switch' because you are so tired all the time that you become wired, and muscles can't relax (hence the Fibro) and you have bad sleep.

    Did you try the Melatonin for the first time recently or is that something you've tried for a while?

    Having no appetite might well be a warning signal - get it checked out? Try not to lose too much weight xx

  • Oh no, not the dreaded fibro! Are you still keeping to your lovely natural diet?

    It's interesting to read about the symptoms you experience. Particularly the stiff neck that affects your glands, I get that too.

    And the insomnia. I used to sleep so well before, now I can't go to sleep and when I do, I only sleep for 3-4 hours before I wake up. Thankfully I then fall back to sleep but it's not right, I know.

    So far I'm only diagnosed with lupus. I really don't want anything else but then who does?

    Thank you for sharing here and well done for beating your lupus into submission!

  • Hi! Yes I am still on my diet - gluten free and free from refined sugar (I make my own cakes with gluten free flour and coconut sugar) and I try to need eat too much dairy as this doesn't help. I also do that intermittant fasting thing - I don't eat after 7pm and eat breakfast after 10am. It just suits my body better - and I get less IBS.

    My theory with the insomnia (and Fibro in general) is adrenal exhaustion. So tired you're 'wired' and can't relax properly - causing pain etc. Have already de-stressed my life so now sitting back and waiting for good results!!

  • How did you manage to de-stress? The major stress for me is the disease and the odd and unexpected symptoms.

  • What I did to de-stress:

    -moved away from a really stressful (almost abusive) relationship in the housing co-op where we lived

    -gave up running the community food growing project that I set up

    -dealt with my grief of losing my father and the trauma of looking after him for years (managing his care) with counselling

    -said 'no' to deadlines for my artwork and told people waiting for commissions that they'd have to wait a little longer - sorry!

    -learning to stop trying to 'rescue' people I think need my help (easier said than done when you are naturally empathic and want to help everyone!)

    -stop feeling guilty for doing the things I love and putting myself and my needs first

    -generally having a more laid back attitude to life

    Of course there's things out of my control - such as unexpected symptoms, but as my friend explains: 'your life is like a boat - too many things carried on the boat make the boat sink lower and lower and is in danger of sinking, so to change this, make your cargo lighter so that when unexpected things hit you, you are in less danger of sinking'.

  • I hope this diagnosis of Fibromyalgia will bring you closer to resolving some of the symptoms that I know you have been experiencing for a long time now. I think that there are very many of us with SLE/Sjogrens/RA diagnoses that tick many of the boxes for FM but this seems to be rarely considered. Best of luck with the melatonin - my GP suggested this at one point off-licence but I was too nervous to try it. My sleep patterns continue to be awful and I have not successfully managed to find a good solution - I practise good sleep hygiene but it's almost always sleep maintenance that's the problem.

    I was getting a lot of headaches and pain extending up from the neck and back of my head but also one-sided facial pain which would cause 'dragging' down of my face around one eye (always the same side). My rheumy told me it was occipital neuralgia and put in a nerve block injection at the back of my head on the problem side and since then I have not experienced any of the head problems. It might be worth mentioning to see if this could help you with your headache problems if they are also related to nerve issues.

    Do you have problems with gut issues/ibs too? This is a problem for me at the moment - not sure if it's nerves or muscles (or even unrelated to autoimmune stuff and just a result of past surgery - displacement of the intestines or adesions - or everything combined together!).

    Clarity of thought is now a problem too and I find even just replying to a post on somehting like this is actually quite hard to do as I lose the thread of what I am trying to say or what it is I have read an replying to if that makes any sense at all.

    Take care x

  • Thank you for your thoughts - well written I thought despite the brain fogginess!

    Sounds like an interesting solution you found for your headaches. I think mine are just caused by muscle stiffness - I get stiff all over in my muscles. But I'll ask next time I see my doctor.

    Take care xx

  • Oh.. and yes I do get IBS too. It's usually a problem at night so I don't eat after 7pm and this helps.

  • My throat hurts and glands up neck shoulders hurt X

  • Hi Dryad, Lori-ellen here, thought I'd chime in here cause I have been a sufferer of this disease for 20 yrs now and cfs (Chronic Fatigue Syndrome). Well that's until I broke my back at the beginning of Feb. I had been on Oxycontin, Oxynorm, Valium and Endone. Whilst I was in hospital for rehab for my back I had a doctor assigned to me and one day he asked me if I would like rehab for all the meds I was on and I cried and told him Yes! Two and a half weeks later I was off all opioids and replaced with a non addictive drug for short term use while my back healed.

    Turns out I am well again and suffer no further symptoms even though I still have the pressure points but the chronic fatigue is also gone. That's saying something considering I (according to the doctors and the pain clinic and the Rheumatologist had the worst case FMS, CFS they had ever seen.  My husband left me cause he couldn't cope. Left me with four children to raise so I had to do something to stay on my feet. Nice huh? I was sure I was going to be gone in the next 10 yrs cause these meds shorten your life. I have funeral funds and life insurance and a house to leave my kids and have named the Executor of my will, my 4th born son, I have five in all. Even planned my non-event service and a gathering of my children with instructions on what to do with their lives. Music for them to listen to at the beach. Then send my ashes off to Melbourne to make 5 small diamonds for each to have set in a family ring setting to be handed down to their children. Lucky at 59 to have two grandchildren and 1 great-grandson at my age.

    Lucky for me that can all be on hold for now and I have done the work now and don't have to worry about it anymore. 

    I must tell you that FMS and CFS go hand in hand usually. Also long term sufferers of those diseases may also contract Lupus at a very later stage. I now have Lupus. I knew I had it before I broke my back. Now all I need is a way out of the Lupus. Hah! 

    Good luck on your journey. 

  • Wow you've certainly been on a journey with this! I can relate to the drug dependancy thing - I didn't realise that codeine containing drugs were addictive until I read about it. I only took them for 3 weeks but felt I was already becoming very dependant! But it's good to have them (I now have Tramadol) in the cupboard just in case for those really bad days. Not something I'll be taking every day for sure. My original diagnosis was ME/CFS 12 years ago. Then I seemed to get better for a time before developing worse joint pain, then I got a diagnosis of Lupus. Now it's Fibromyalgia. I feel a bit bemused. Chronic illness is not fun and the doctors don't seem to really know what the causes are or how to treat it effectively. However, I have made an improvement over the past 4 weeks, I've been increasing my walking bit by bit every day and then going on a relaxing holiday in Devon - I was able to do even more walking and I took less pain relief. Things are going well! I wish you all the best xx

  • Hi Dryad, The hardest thing is to get a GP and a Rheumatologist who are on the same page, but I'm also going to say that aside from your walking that Acupuncture for pain and relaxation is in my view a must. These diseases are brought on by stress whether it be in a dysfunctional family unit, a broken bone or a car accident. In most cases it affects very fit people like elite athletes or people who are very physical in their activities. Sad I know but that's the deal. Please try somebody new for your sake and give acupuncture a go if you can afford it. One more thing if I may, sometimes getting a treatment or two from a Chiropractor can help with joint and spinal pain too. 

    Good Luck Dryad xx 

  • Thank you. Yes I forgot to mention that i do also have acupuncture - have done for 10 years and it's been helpful. I'm tempted to see a Chiropractor at some point because I broke my coccyx 6 years ago and I think that was one of the triggers along with emotional stress.

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