Lupus pain

[andreabm]

I was told my lupus is under control which I am happy about but is it normal to still feel like utter crap ie joints really sore tiredness etc ??

[Kate2Irish]

For me that's pretty normal. It's worse in the morning , kind of levels out in the p.m ,but by bedtime I 'm hurting again. I was diagnosed about 8 years ago and I don't have any organ involvement. Just the pain and fatigue . Ibuprofen helps

[Circles in reply to Kate2Irish]

I agree I feel like crap most of the time but I think back before plauquenil and yes its a bit better thank God. I can do this at least now I know what's going on. Was going around in circles for so long.Felt so helpless and could not understand what was happening at least now I have a bit more knowledge and going forward I can fight this the only way I can. Keep fighting. Have been fighting all my life I think but never knew what it was till now.Feel better now.We are strong and have been left to doubt ourselves always.If something does not feel right it usually is not.Stay strong keep asking until doctors listen.xxx

[Tinky52]

I have Lupus which is not controlled. I wake up hurting all in my joints and stays all day. I'm also very tired even though I'm on different vitamins. I also wake up with headaches, does anyone else. Ibuprofen doesn't do anything and my primary Dr keeps changing my meds even though I see a Rummie Dr.... So frustrating!

[Tinksie in reply to Tinky52]

Hi Tinky (that was close, I just noticed it time predictive text changed that to stinky! 😬😉). Just wanted to say in case it helps that I feel much as you do and often wake up with a headache that stays. My Rheumy told me that, although I don't have antiphospholipid syndrome (common in SLE), Lupus patients can still have slightly sticky blood that causes headaches. He put me on aspirin and after 2-3 weeks I had hardly any headache days. (I have had to go on something else since as the aspirin flared up my asthma but that now works in the same way). Hope that's helpful. Best wishes Tinksy xx

[Tinky52 in reply to Tinksie]

Hi Tinksie I also have asthma and use abueteral to help with the wheezing and to catch my breath, it's scary at times! I'm on 81mg regiment of baby aspirin but it doesn't do anything for my headaches. I go see my new Rummie Dr in Jan since we just moved here.

Have a Very Merry Christmas xx

[Tinksie in reply to Tinky52]

My asthma was much worse when I was taking the aspirin. I've been put on Clopidogrel instead. It might be worth asking about as I was having scary asthma attacks which stopped when I stopped aspirin. It's quite common for asthma sufferers not to tolerate it apparently. All the best for Christmas. Look after yourself x

[What-up in reply to Tinky52]

I have migraines occipital headaches and muscle tension headaches and I get Botox injections and they help. I also use ice packs, essential oils heat and I get massages.

[What-up in reply to Tinky52]

When you say it's not controlled what organs are involved?

[Barnclown]

Well, yes, mainly....good description, Andrea

for me this is all about knowing my body & my chronic multisystem symptomatology...and learning to recognise + act appropriately & reasonably to new developments including emergencies...

Depending how long you've had lupus & been in treatment (hopefully at a good lupus clinic), even with an individually tailored treatment plan that's really helping, we can still feel this way much of the time...but usually this is relative: so never forget how bad things were before you started getting the treatment you really needed. If you feel you're not on an effective enough treatment plan, then try to prep a good case for more assistance and present this case at your next clinic.

E.G. the feeling Utter Crap (UC as I call it) is always relative for me now my lupus & sjogrens are relatively well under control and my therapeutic treatment plan is mainly effective. Even so, life with lupus & co requires me to take an active part in lifestyle managing the various typical daily & periodic symptoms that seem an inevitable part of both my version of immune dysfunction and the side effects of my meds. I'm lucky to be seen regularly at a great lupus clinic, where we review how things are going & tweak my meds + consider whether I need referral to other clinics re specific multisystem issues...I.e. right now, am going through an UC phase due to broadly flaring abdomen symptoms that involve gyn, gastro, uro, lupus, sjogrens, ehlers danlos hypermobility, vascular, immunodeficiency issues...so am especially actively under the care of all the relevant clinics.....and meanwhile my bod is adjusting to heavy duty new IV osteoporosis meds, which is playing a part in this UC phase. It follows that I haven't felt well enough to post &/or reply much on forum lately..but even at these times I try to keep reading & hitting the 'like' 👏👏👏 tab here...this forum is my best treatment of all...+ this forum reliably helps me beat the UCs!

Because I am a typical early onset SLE patient, I have the usual collection of multisystem secondary conditions + the usual relatively permanent collection of multisystem symptoms caused by the cumulative damage SLE inflammatory process causes over the decades.

It is what it is..i have relatively good patches & relatively worse patches. Little effie brilliantly described this here as like living in an automated carwash. Babs describes it as living a kaleisecope life. At 62, after a lifetime of getting as much joy as poss out of living despite lupus & feeling UC much of the time during my 6 decades, these inspired, vivid, and v funny similies help me to cope as much as my treatment plans & lifestyle management do. I don't know where I'd be without our wonderful forum

🎄🍀 coco

[littleeffie in reply to Barnclown]

Your incredibly informative posts are helpful, enlightening and much appreciated too.

Sorry you aren't up to the fight as per and miss your regular input but when the car wash biffs and the kaleidoscope turns you need to look after yourself.

Take care my friend and know you will be back on top form soon with all the caring thoughts from us all on here.

Lupus friends a must for every lupie sufferer. Xx

[Barnclown in reply to littleeffie]

🤗😘👍👌😉🎄

[nanleighh in reply to Barnclown]

I know Coco I've been missing seeing you're beautiful postings.. Praying that you're feeling better soon

[Barnclown in reply to nanleighh]

Thanks so much nan! 😊🎄🌟🍀

[Hidden]

That's a really good question as I've just got up after a really uncomfortable sleepless night as yesterday I was running around doing chores etc, and of course I felt ok at the time but when I went to bed my legs were killing me so I must have over done it.

My bloods seem to be under control but I always have pain sometimes like last night horrendous and sometimes it's just a simmer.

[KarenC]

It's different for us, feeling better is just that,not completely well and pain free just not as bad. I think we just get used to all our problems and only notice when something else pops into the mix. After a while living with pain, fatigue and everything else that we put up with just becomes the norm. I read a post on Facebook the other day which was very apt " If I woke up in the morning without any pain I would think I was dead". Very fitting I think.

A happy and as healthy as we can be christmas to all xxx

[83meggie]

My SLE has been under control for some time,then over the last 2 months,I started to go down hill.fatigue set in,I became breathless and now I've got sciatica !! Chest X-Ray has shown up some abnormality so have been fast tracked To QA Hospital for check,hopefully before Christmas.The sciatica makes me feel sick and depressed.I play golf and have had to pull out of so many games just recently.I am 77 but was very active and this infuriates me.Because I look so well,friends find it hard to understand how awful I feel !!! Do you find the same response? Happy Christmas to you all.

[Tinky52 in reply to 83meggie]

Hi 83meggie, I'm only 63 but do feel what you're saying. I was an advid bowler till 15yrs ago when I started out with overwhelming fatigue, pain that Tylenol or ibuprofen wouldn't help. I now have so much pain in my hands I can't do very much anymore. By the way, people tell me the same thing, I look great but if they only knew that smile I hide behind, there's much pain they would Never understand! Hope you have a Merry Christmas xx

[Poshcards]

Sorry but yes! There is always something hurting, but one just has to get on with life or it will eat you up and spit you out! Try and be happy xx

[Maya23]

I was told my lupus is under control too (negative ANA) but I still feel like crap too! Lots of fatigue, joint aches, muscle/tendons burning and flu like aches most days. I am wondering if this is it? Should I just accept that this is the way it is? My mind can't accept it. I am hoping to see my rheumatologist again soon and I'm going to ask him if I might have Fibromyalgia going on as well. I might never know what's really going on but I can't stop asking.

[vaderviper in reply to Maya23]

Dryad,

I am a retired M.D. in the USA. I don't like correcting other Doctors, but when they are wrong and it could mislead a patient I feel the need to intervene. A negative ANA (anti-nuclear antibody blood test) does NOT mean your Lupus is under control. Approximately 2% of people with Lupus will show a negative ANA. The best test to determine how well your Lupus is doing is to do a DS-DNA (double stranded DNA) blood test.........which is a specific test for Lupus and how the patient states how they are feeling, i.e.----is joint pain less, headache frequency, over whelming fatigue etc. There are a number of people that show a negative ANA, but can have severe autoimmune disorders. On the other hand, some people will show a positive ANA and have absolutely no autoimmune problems. In other words, to be sure which disorder you have you really need to do the specific blood test for that disorder.

You did not say, but do you know if you have Sjogrens as well? Many people with Lupus do, as often is the case with Raynauds and Lupus.

Wishing you nothing but the best and feeling better.

Dr. S

[ramada in reply to vaderviper]

Vaderviper,that's really helpful what you have just mentioned I'm definitely asking my rheumatologist to test me for that.. Thanks

[Tinky52 in reply to vaderviper]

Dr S, I've been diagnosed with sle for about 15 yrs. I'm a 63 yr old woman whom the Drs can't believe my age. I have beautiful skin. I haven't seen a Lupus Dr in 3 yrs just didn't like him. I now depend on my Pp to get me my meds. I know I need to find another Ruemie Dr which will be in Jan. I have headaches everyday my hands, hips, knees all joints are very painful. I don't sleep but about 3 hrs a nite. I'm fatigued, I feel like I'm on fire but no high fevers. We've moved and now my New PP has taken some of my meds away and dropped my dosages. What Dr does this? Please help me to understand this pain I'm in and is there any pain meds for these headaches etc. I also have a speckled pattern when blood work is done. What is it? Ty and have a Merry Christmas xx

[What-up in reply to Tinky52]

Tinky, I too feel like I'm burning up but no fever. I am having a flareup right now so I chalk it up to that. These are hot. Come and go and they are definitely not hot flashes. You sparked my interest.

[Tinky52 in reply to What-up]

I wish I had more energy but no matter how much sleep I get, I'm still tired. I've tried low movement exercises but I always feel it the next day. My daughter told me to put about two hand fulls of Lavender Epsom salt in hot bath water it will help my muscles, and it does to a point but it comes right back when I'm out for about 1/2 hour. Even though I'm on NSAIDS, my Lupus still isn't controlled but like I mentioned before, I haven't see a Lupus Dr or Reuhmy Dr in a little over 2 yrs. But I do get to see a new one on Jan 18 2016, can't wait!!!!! Hope everyone has a Great NEW YEARS!!!!! xx

[What-up in reply to Tinky52]

HeyTinky! It's one hell of a disease. I am completely exhausted. I have good hours not good days anymore. I have terrible back pain my ankle is needing surgery but I guess my question is why would you think you're in a flare up if you haven't seen your doctor for two years? I'm honestly not being a smart a. I yes there is constant pain that just comes with lupus and fatigue too. I'm trying to figure out if I'm through my flare up yet or not.

[Maya23 in reply to vaderviper]

Thank you Dr S for the clarification. I had been wondering this. My mother has RA (really badly) and has never tested positive for it in her bloods. Makes me wonder what my Rheumatologist was implying with the twice negative ANA. "Well I certainly don't feel very well " I said. I left in tears because I thought he was implying that the bloods showed the lupus under control even though the ESR had gone up again from 8 - 22. My ESR is always somewhere from 20-30 even on days when I can barely walk. I have tried to get an earlier appointment with him but no luck. I've been in bed most of the time this year due to flu like aches and burning pains in my arms legs and feet, with a stiff neck and headaches most days. I think I might have somethign like Fibromyalgia going on concurrently. It's been a tough year.

[ramada in reply to Maya23]

Hi Dryad, I asked my gp the same question and he said if I was positive for sle then I can't have fibromalagia.. I found his answer very confusing..I get the same symptoms as you so in definitely going to ask my rheumatologist tomorrow.. Hope you get to feel better..

[Maya23 in reply to ramada]

How did it go with the rheumatologist?

[ramada in reply to Maya23]

Hi Dryad, it's so overwhelming going to the rheumo.there's so much to say..I asked my rheumatologist if the symptoms I'm having I could suffer with fibromalagia but he goes how if I did I wouldn't be positive for sle. Lol I'm more confused 😕.he also said my vit d level is low but I feel that doesn't explain my extreme fatigue n pain all over my body.I'm really considering going private to get more clear answers.. London lupus centre seems like a good private hospital..

Dryad,I hope I was able to help..

[What-up in reply to ramada]

That answer does not sound right to me at all. For one thing, fibromyalgia is based on symptoms alone. I was told I have fibromyalgia as well but I have wondered how they can tell the difference?

[ramada in reply to What-up]

What-2 I agree with you.Iv been diagnosed with lupus sle a year ago.I feel so confused with the answers I'm getting.my rheumatologist says it could be my vit d level causing me to feel tried n in pain? I need more explanation!

[What-up in reply to ramada]

Vitamin D levels can cause those issues but mine are. in the normal range now and in a person with lupus, it really doesn't make a difference. However it does not hurt to have them in the normal levels. This is a simple blood test that can be done.

[What-up in reply to ramada]

That sounds crazy to me. You can have lupus and fibromyalgia and RA! Although it's not a blood test, there is a test they do for fibromyalgia. Has that been done?

[Tre123]

Does anyone suffer from hair loss especially when in a flare. Tried all sorts of vitamins and potions but nothing working. Please tell me that it will grow back. I kno that the medication has a lot to do with it. Just fed up with the hair loss!!

[soootired in reply to Tre123]

Yes I do, and no I don't think there is any magic potion that will help, just resting and "riding" the flare as mine tends to settle down as the flare does.

[What-up in reply to Tre123]

I did use a product called Nioxin which seemed to stimulate hair growth. Pinterest has different ideas on hair growth as well although I have not tried any, I want to to see if I can thicken up my hair.