Hi. I've had SLE for 27 years. I am currently in a rather bad flare. The worst I've ever had! For about a month or more I wake up feeling like I've been dragged behind a truck. It's a different kind of pain than I've lived with. It feels like it's more in the muscles than anywhere else. I know that with Lupus everyone is different and every day is different but I'm wondering if anyone out there developed Fibromyalgia alongside Lupus. If you have Fibromyalgia can you explain to me the pain that you experience? Any other suggestions (besides going to the doc because I do this only as a last resort!!!) would be appreciated.
SLE and Fibromyalgia: Hi. I've had SLE for 27 years... - LUPUS UK
SLE and Fibromyalgia
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Mamasibby
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Hi Mamasibby
You have my sympathy - flares that drag on wear down your reserves.
I have had Lupus for about 25 years and was familiar with all its tricks and bad behaviour until a couple of years ago when it suddenly started to cause me prolonged bouts of pain and weakness in my muscles. I was worried and desperate for some sort of explanation but various tests have drawn a blank so, like you, I started to research whether I might have Fibro. I didn't mention this to any Doctors but asked the advice line for FibroAction and also went to see my Osteopath who has a special interest in Fibro.
It seems that the pain needs to be severe, unrelenting and truly widespread to indicate Fibro (mine was not) and not all Doctors are sympathetic to people suffering with it. As it happened, at a point when I didn't even have the strength to walk across the kitchen nor lace up my boots let alone walk my dog, I launched into a full blown attack on my joints and the muscles eased. I realised then that my Lupus can and does attack my muscles and I find it harder to deal with that than many of the other issues.
Have you tried posting the same question on the FibroAction site? There are lots of supportive people there who suffer from both Fibro and Lupus. I really hope you feel better soon. Clare x
Thanks Clare!! I hear what you're saying about being better able to better deal with the other issues than the pain associated with this!!
Aww Bless you fibro is awful. You just can't move. The pain is very hard to describe but it just hurts just to touch your skin. Every muscle, bone hurts . I was diagnosed with it after many years of lupus. I find different things make mine worse. Weather patterns going from hot to cold also drafty places. When I get tired it is worse too. Can you tell what makes yours more painful? Are you on any meds for it ? I've tried everything but just hate all the side effects. I find the drugs make me feel strange.sometimes I do take amitryptilene but hate the groggyness in the morning. The doctor will give you tablets to try & they say physio helps but it just made my joints worse cause of the lupus . Hope the Doctor can help you x
Hi Tremarel
Thanx for highlighting weather changes. I am finding l get worse when weather is changing especially this time it has hit me soo badley that I feel as if l have come to the end of my life
EVIE
Hi and yes I do have fibromyalgia as well as sle,ra,hypermobilty,sjogrens,Raynaud's .My husband also has fibro and osteo.The sort of pain and fatigue you can experience with fibro can feel more debilitating than arthritis or sle.Its a demon that can transfer from feeling like you have done ten rounds with a heavy weight boxer to have been stretched on a rack for a week!.It can flare as with your sle.My husbands fibro feels like a burning and sore pain in the muscles ,tender to the touch even a jumper can feel to heavy and painful.I also experience this but also a torn,bruised muscle pain as well.Being in one position like sitting at the endless appointments,travelling and temperature change maske it worse.I find thinking about posture and doing a few gentle stretching exercises - just 2-5 repetitions of a few mid morning and late evening help as does relaxation ( not easy but needs must) and the very important pacing activities can help.Hope you find some relief soon .
I can relate whole heartedly to everything you have said. If this is fibromyalgia I agree that it is worse than SLE. I've done really well at managing my Lupus and don't let it interfere too much with my daily activities but this pain and fatigue is crippling me to where I can't do anything. what medication do you take for it? What are the side effects you experience?
HI
I am soo glad l found this page.I thought it was only me feeling this way. Last week ltold my Consutant that l think l was going thru changes. I am forever taking off and putting on my jumper. Feeling sick but l dont vomit. its like heartburn and as if l have water in my brain. I hate feeling this way. i feel like going out and just run so the pain can go away
EVIE
I had the same last summer - all of a sudden my muscles started to ache badly. The rheumatologist concluded that the lupus had taken a different path and was attacking the muscles. A 6 week course of steroids resolved it. If in doubt whether muscle pain is fibro or lupus, take steroids. If the pain improves, then it isn't fibro (because fibro doesn't seem to be inflammatory in nature).
My question had always been whether the pain is due to PMR (polymyalgia rheumatica) rather than lupus (because the muscle pain is lower back, upper arms and shoulders in my case) but my rheumatologist doesn't believe so. Hmm, I reserve judgement until next time this happens.
Hi,
First of all I would like to make known I don't have SLE or any other related illnesses but my mum has. From SLE and DLE to fibromygia and all the others in between.
I ruled out all the others you seem to think it maybe ie.: polymialgia rheumatica etc etc also. Pains in the back, arms, shoulders were all classics for many other conditions.
I feel what you're going through as I have battled mums fight over the years and can certainly understand it. As a medic myself it's not always the easiest to diagnose and sometimes, there is nothing to diagnose, however, it doesn't mean it isn't there or/and it won't be coming back.
Mum developed fibromyalgia mid 2013 and it seemed like it she lost all the life she had, it was unbearable, affecting all her quality of life. She trialled every pain medication you can think of. After researching it thoroughly for different cases to study I found a common ground. Most were women, pre or menopausal, between the ages of 30-55 with other related auto immune conditions.
I then looked at alternative options and found that folic acid, cyanocobalamin 50mcg(b12), b6 in the morning and 5HTP before bedtime. When taken as a combination could trigger the brain to stop sending pain signals or dispersing them. Mum has taken these since January and when she has some pain, she takes Devils claw anti inflammatory tablets. Rare are the days she takes paracetamol now. She also has started with acupuncture once a month. I can honestly say it's worked for her. She came off the diazepam to sleep and all other pain relief and seems to have gained her life back.
It could be worth you lot giving it a try, after all, it is only natural medicine you can buy from Holland & Barret.
Give it a couple of weeks to work. Mums took a week but she regained her life.
Good luck and let me know if you've tried it and if it worked for you.
Regards
Thanks for the information. I will give this a try. Can't hurt!!
It will hurt less to your body than taking paracetamol I assure you.
As I mentioned before, as a medic myself sometimes the answer isn't always chemically synthesised drugs. Natural medication to balance hormones in your body plays a vital part too.
It's not the quickest route to relieve your pain, but it'll be quicker than waiting for a rheumatology appointment.
I will definately try this because l am taking quiet a lot of medications and now l am finding a lot of side effects
Please let me know how you get on, as I mentioned on another reply, you must take that combination for it to actually work. Let me know how you get on. Would be good to argue this as a new natural treatment with prescribed supplements to our patients.
Regards
I am also wondering if I am developing Fibromyalgia alongside my lupus too. What made me question whether all the pain I'm getting this year is something other than lupus is that my blood results for lupus are looking good - and yet I feel so bad. The pain does seem to be more in my muscles, tendons and nerves. I'm getting widespread all over pain. It often comes with a sense of muscle stiffness, weakness and 'heaviness' making it hard to get out of bed.
There is also tenderness around my joints (as opposed to inside them like lupus would cause) particularly elbows and knees and in my right foot which also feels like throbbing burning sensations. I also get electric shock like pain in various places. I am seeing the neurologist because my rheumatologist couldn't account for those pains with the lupus diagnosis. I've had 2 MRI's and I'm seeing the neurologist tomorrow to see what the results mean.
I'll let you know.
x
Yes please!! Keep me posted.
I saw the neurologist this morning. I feel upset and emotional because although a few things flagged up on the MRI's, nothing can account for the pain I'm getting.
And the neurologist was really dismissive. I mentioned I thought I might have Fibromyalgia and he tried to tell me that it was unusual for someone with lupus to also get Fibromyalgia - but I know of at least 2 people who have both. He said he couldn't diagnose me, that he didn't want to label me with something because there was no 'proof'. He didn't really know anything about Fibromyalgia! He just wanted to give me pain pills, but I got upset and said "how come I've got all this pain and you can't find any cause for it? But you just want to give me pills even though you don't know what it is??"
My husband was with me and as we walked out he said 'well what a waste of time that was!" Thank goodness he was able to come with me because I left feeling like 'did that really just happen? Am I just mental?'
I suppose the positive thing was that I don't have anything life-threatening to worry about from the MRI. And he has recommended that my GP refer me to a Fibromyalgia clinic (but only because I was so insistent that I was in pain and I wanted to know why).
These are the same frustrations I feel with the rheumatologist that I saw way back when. I "fired" her actually. I'd take a day off of work every 6 months to drive over 100 km to go and see her. If I was lucky I'd get 15 minutes with her and I'd walk out knowing nothing more than when I walked in. Now I am my own doctor. Lol. I research the hell out of everything and thankfully my GP is accommodating. I go in and tell her what I'm experiencing, what the "fix" is and she looks into it for me. I decided long ago that these high priced specialists aren't really worth the money they make. It would be different if I felt like they were doing something for me but I don't feel like that. Tired of them wasting my time!! That's my rant!! Lol. I'm sorry you didn't get any answers. Good for you that you pushed enough to get a referral to Fibro clinic. Hopefully you don't have to wait too long.
Hi Dryad,
Whilst you are waiting in pain, I would strongly advise you tried the tablets I mentioned above. It has helped mum from being a 10 scoring in pain, not sleeping at all with pain, hardly being able to move for 2 years to leading a normal life. I have researched it extensively and it's helped so many people. The likelihood is that body is imbalanced and suffering hormonal changes.
Also visit an acupuncture clinic. I can't recommend it enough.
Cyanocobalamin/B12 vit x1
B6 x1
Folic acid x1
Devils claw anti inf x2
These in the morning
Before bed
5-HTP x1
Devils claw anti inflammatory x2
You can get all this from Holland and Barret and get all max strength.
Acupuncture once a month.
Pain killers will NOT take the fybromialgia pain away, it will mask it and mask and mask it and make you feel like you've been inside a tumble dryer for weeks until you regain the pain.
Please please please do it, give it a week and you'll see improvements!
I desperately had to seek this for mum, the pain of seeing her like you all are feeling was killing me, as a medic I got in touch with many of my colleagues who diagnosed her with fybromialgia (on top of her lupus, ra, oa, cardiomyopathy) so she was well looked after. And all it turns out to be?? A hormonal imbalance causing the nerve signals to fire off.
Hope you get it resolved.
Thanks for that. I'l have a look into the supplements. I am already taking magnesium and all Bvits as well as omega oils. But it makes sense that it's a hormone imbalance because my periods are also changing and being awfully heavy.
I already have regular acupuncture which really does help.
I'm also taking LDN which is a very low dose drug that stimulates the body to produce more of it's own pain killing endorphins. Hoping that will improve things over time too.
Thanks again!
Hormonal imbalances seems to be the highest trigger for the fybromialgia pain in most of the case studies I've over seen.
The supplements I advised on only work by complimenting each other, if you take one but not the other the effects will not be the same.
Mum is (45yrs old) started pre menopause 2 years ago and it was since then they started. She now seems to have gained most of her periods again. Blessing in disguise I guess.
Let me know how you get on. It would be good to be able to help others and argued the case of these supplements with some of my colleagues and perhaps develop a further study to help improve so many lives!
Thanks
I see Neurologist and he monitors my SLE bloods and my organs. I am on tratment for kidneys now but he cant understand why l am in soo much pain and sometimes my breathing is soo heavy that my chesty swells out and pple around me can hear me breathing. Muscle pains and each time l stand my joins clicks that pple around me feels the pain for me
I had fibro diagnosis first then lupus few years later. My only way of describing the difference is that the fibro made me hurt all over..as if I had been in a tumble dryer and battered.....specific pan in in trigger areas, headaches, neck pain, poor sleep pattern. Lupus feels like having very bad flu, it makes me feel so I'll I can't get out of bed. Very similar effects to fibro but with added feelings of extreme illness like a flu. They both have similar indications but I know when lupus is kicking in as I start to get a sore throat, no infection but it feels like one.
Hi I am suffering with the same thing. I just pray cause I'm at a total loss. Feeling tired all the time and the pain is so unreal I feel that I'm imagining it. If I find out anything I will let you know.
Give natural medicine as I mentioned above a try. Since treating mum, we both swear by it!
Hi there
Ihave just joined this community group and l have been diognised with SLE for the past 2yrs now. I do have the Fybromyalgia, Alopecia, skin type and crucial pain in my joints. At the moment I am feeling the way u are feeling that l wake up as if l have been dragged all night and feeling sick that l dont feel like eating even to givemyself a shower. I dont feel like going outside and Doctors are my last resort. I am having this heavy headaches that l feel like cutting my head off. Someone have advised me to do excersize but l am failing to drug myself out of the house
Hi Mamasibby,
I ve had SLE and other autoimmune issues for over 20 years and know exactly how your feeling! As. I never used to have muscle problems, but during these past few months have put it down to getting older,but thinking about it that's probably a pretty lame excuse...... I ve had more pain in my neck and shoulders it's feels like there is someone really pushing me down so I cannot stand up and I ache so much more, but my bloods show I'm stabilised apart for my neutrophils which are 1.3 (low) according to the doc. plus I'm always anaemic but that seems to be usual for people like us. It's horrible feeling so tired all the time I am lucky I am able to rest but it doesn't seem to make much difference.I have to physche myself up to tackle any job I have to do. I try and get to the pool once a week to exercise but always come home and go to bed afterwards and I have recently dragged myself to a Pilates class as I think we have to try and keep going. The hardest thing is just not being to tell anyone because as usual they cannot see how you feel plus it's making me feel quite depressed and sad when I know I have no reason to be. I'm due to my consultant in September so thought I should just wait and see how things progress? As like yourself do not want to rush off to a doctor.
I'm so sorry you are suffering I began to think I was all alone and that made me feel even more sad! I really wish I had an answer atm my shoulders feels ghastly I ve tried heat packs ice packs. Hot baths can help. ....
I do hope things begin to settle down for you maybe we both just need a little time.
Do let me know how you get on to?
Take care!
I would recommend a 6 month iron course with one month gap and start again for another 6 months. That seems to resolve anaemia.
With your neutropenia however that must be monitored for changes. It could be that you may need a neutrophil infusion. Hopefully it will pick up.
As I explained above try some natural medication to relieve pain, works wonders but try not to exhaust yourself doing cumulative work.
Good luck
Hi interesting to read what you say,may be a silly question,but why the gap inbetween the iron pills? Is this to give our bodies a rest?
Thank you so much Emt1mb for your comments!
It's no bother at all. I have a special interest in SLE/DLE and bring some of my knowledge from case studies in Portugal where there is a higher rate of patients suffering from various SLE auto immune related disorders.
I gained this interest when mum developed SLE when she was only 27 and I was only 8 at the time.
After graduating I took it under my belt to try and help others. I did case studies on it and my advice is based on what I've tried and tested on many other patients that seem to have the same pain paterns; and it works!!
if you give those indications and advice a try, let me know how you are getting on.
Hi. I have been diagnosed with lupus for about 6 years and have recently been diagnosed with fibro too. My lupus is fairly low level at moment thanks to plaquinil but the fibro gives me more trouble with muscle pain and insomnia. I know you don't want to go to the doc's but I went and was given amytriptiline and its been a godsend. I also started pilates after the rheumy advised it to keep muscles strong as the pain makes you not want to do much, I hope you get something sorted as having both is no fun.
Hi, I too have Fibromyalgia and SLE. Was dxed with fibro in 2003 and SLE in 2009. Also dxed with Sjogren's just recently when I went in to the eye doctor to start Plaquenil for SLE. I have the widespread pain that is typical for fibro. And weather can play a huge part of that as well as stressors in your life. The lack of sleep, also fibro related, along with the electric sensations up and down your limbs and the migraines. When I started having inflammation my rheumy said 'not fibro'. And in 2007 I had to have a total colectomy because of chronic constipation. Pathology report came back 'inflammation'. I don't have Crohn's and it was a bunch of symptoms that qued my rheumy in...the day I walked into his office with the butterfly mask that was so bright it looked like it was painted on! So yes it is rare but I've read that 30% of Lupus patients develop fibro. I kept telling my rheumy that at times I would feel like I had a bad case of sunburn and would actually run a slight fever. I found out that is Lupus.
So on any given day when I wake up I don't know what I'll be up against. When first diagnosed with Lupus my doctor tried Plaquenil but it was too harsh on my stomach. Then we did a year of Methotrexate which made for more 'Bad' days then 'Good Days'. Then a trial of Enbrel for 8 weeks, which didn't help. I am very sensitive to meds, not sure if that hypersensitivity comes with the fibro or SLE. Then after a gall bladder surgery in 2011, when I wasn't recovering like I should, I was put on Leflunomide and Prednisone which finally offered some relief. The draw back is that now I look 'Cushingoid' after being on a low dose of 5mg daily of Pred. So doctor wants me off Pred and to rechallenge the Plaquenil.
So far its been awful. I have such terrible bone pain that I can hardly move. It hurts to bear weight on my legs, especially my knees and ankles. And of course I'm sick to my stomach and have been taking Zantac. The bone pain is something new. This is week 13 of generic Plaquenil. So far I haven't seen any improvement. Rheumy says it might take up to 6 months and to hang in there. My better judgement and body are screaming 'enough'. I've read that the majority of SLE patients do very well with it. To let you honestly know how bad it is, this is week 12 of me being bedridden. On top of it all of my fibro pain is out of control. The oxycodone is not even touching it. I sure hope in another 3 months I can look back and say it was so worth it! Sorry to be such a whinner but glad to be able to complain to someone who can empathesize. ~hummerbird
Hi Mamasiby!
I hope you're feeling better; I know it's been a while since you started this post, but I can't seem to find anyone saying the same, so I think it's important to add. The thing that distinguishes fibro is the pain points. You can find maps for them all over the internet. Maybe get someone to try them on you? Otherwise when you see your rheumy you can ask them to check.
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