2 steps foward 10 steps back;(

Dear guys ,i dont know where to turn next ,this is unbearable now ,hence my search for people who understand.I just hurt soooo much ,particularly my bloody ligaments and tendons,are they gonna actually come away from the bone i ask?My hips upward is worst ,and upper body is agony ,feel like the flu is ever evident ,just minus the sore throat etc,lymph glands kill ,feel toxic and utterly exhausted ,weird inflamed blood vessels in my eyes ,nerve pains galore ,weird twitching everywhere ,nausea but always hungry ,complete intolerance to exercise and heat .Absolutley exhausted and dont know what to do ,getting really low now:(this used to be the kinda symptoms when in a flare ?but now it seems im flareing continually .Even phone calls are exhausting ,its ridiculous,were told to move .eat well and reduce stress ,how can this be done ?im scared because if i try to walk i honestly suffer like you would never beleive ,80 yr olds walk faster than me ,im 38yrs ,im really scared ,i keep reading of people recovering and yet i kept beleiving i would bounce back again ,but its just not happening and im getting worse,does this all sound familiar to any?Really lost and scared .sorry guys ;(

24 Replies

  • oh brave i feel your pain! hang in there and keep going i know its really hard,go back to docs if things dont improve please dont suffer too much, you need to find the energy to keep going. i understand the fear really well as i too get really scared sometimes so much so that i can panic and end up in tears all day long, i also hate the constant different symptoms i get often, and i hate it when i have to keep going back and back to my gp complaining im sure they think God here she is again!!!

    flu like symptoms and glands up are a common complaint for my docs dont seem to worry about that but i would worry about inflamed blood vessels, i take it your rhuemy knows are your symptoms and i hope you are being carefully look after

    yes stress is also very common for me and i too get told to relax and not worry but alas is easier said than done and just sometimes it can consume me and then win.

    i always believe that if my symptoms ever get to appoint where they feel like they are getting worse then i would personally take myself straight back to the docs and ask to be checked over for anything.

    remember you are not alone even though it feels like it at times you take care and rest and get your strength back.:)

  • Thankyou so much ,my rheumy doesnt say much ,neither my doc?just same old same old,im def getting much worse,my eyes have burst blood vessels in them ,im sure that an indicator of something inflamation wise?but my last lot of blood tests a few weeks ago were normal ,weirdly at xmas i was on antibiotics for a water infection and i so started to feel better ,and when i finished them i went back to my previous state.I just dont know what to do?my rheumy never sees me in this state ,guaranteed i look or feel average when i go to see him>my liver function was satisfactory,my kidneys fine ,white cell count lower end of normal ,no imflamatory markers ,so they just look at me like a freak,i have been in this steady decline for over 12months ,Im due to see and endocrinologist in feb ,i have some hormone issues ,im sure if we could address them it might help?thankyou ,i hope you keep well?can i ask your lupus history ?

  • hi brave

    my lupus history is so far with one year in from diagnosis is touch wood no organ involvement so they class that as mild, however i have now sjogrens and am under a dermatoligist for skin rashes and inflamation,so far i have only tried planquil which sadly i had a bad reaction to and had to stop so meds are tough for me i suffer allergies and now i also suffer with my digestion and am on meds for acid reflux which i never ever had before.

    along with the chronic fatigue and aches i do try and forget lupus and carry on until i cant then i rest, it is a life changing desease with lots of ups and downs but with the support of my family i get through the tough days.

    hope you feel better soon.

  • Hi Brave, hoping and praying you are feeling much better today. Have you tried ringing your Rheumy nurse and ask her to arrange for you to see the consultant ASAP or ring the consultant's secretary.

  • Thankyou maureen p!i dont have a rheumy nurse;( however i am seeing him on monday ,thanks heaps

  • Hi brave, just thought l would let you know, l am in the same boat as you, l seem to get worse and worse . Had appointment with my rhumey last week, and she has upped my methotrexate to 15mg , but l am still suffering with painful eyes and twitching and pain everywhere. I also have been having horrendous headaches,swollen glands and l sometimes wish l could saw off my legs and hips too. The rhumey has booked me in for a MRI brain scan, for she said she thinks the lupus is attacking the brain, (scary). Just want to let you know your not alone. I get very scared dragging myself out off bed and trying to crawl to the sofa.But hey l might be at the lowest point but things can only eventually go the other way and reach a higher point, so hang in there, l know how awful it is at the moment but things will change, just hope its not too log coming, Hope this helps XXX.

  • Thankyou lucy may,im scared because surely if i was gonna get better i would have by now?i too have had brain mri ,all ok!but evidently i have neurological symptoms<even my nerve tests were normal ?but yet i get terrible nerve pain and visible muscle twitching with electric shock feelings that make my hands and legs jump randomly .Muscle spasms ,balance problems ,rinnging in ears ,bladder problems ,complete heat intolerance and adverse reaction to exercise ,its really bothering me.Lets hope and hope and hope x

  • Brave, you sound so low, which is no wonder given the pain you're in. Isn't the time, you think, to try a different medication? Steroids are only a temporary measure, pain killers are just covering the pain but you need something long term that deals with the underlying cause. You mentioned you got side effects from Plaquenil, but couldn't you try a smaller dose? Or an immunosuppressant perhaps? I know from previous posts that you are not keen on medication but living with this pain and discomfort on a daily basis is no life. I know how soul destroying this must be, from full of life to snail pace. But try and give yourself a break and just let the days go as they are, be hopeful that soon the pain will improve. It is a very slow process, so please don't be down because you don't see an improvement, it will come, you'll see. Meantime, ask your doctor for alternative medication and take loads of hot water baths, try and reduce your dairy and gluten and sugar and be kind to yourself. I wish you speedy recovery, even if step by step.

  • Im off gluten ,cutting back on sugar ,no alcohol ,i do take pain meds ,my consultant had me on the lowest dose of plaquenil 200 mg a day ,when i asked him if i could try an even smaller dose ,he shook his head and said it would be a waste of time,and said to me ,if i cant take plaquenil then i prob wont tolerate any other meds?i have a really bad heat intolerance (not sure if it a lupus thing?) so hot baths bring on flares in me .Im really not a difficult person as it would seem im just so sensitive ,im not sure if my leaky gut allows meds to enter my blood stream quicker so i get terrible side effects?really lost and just dont know where to turn.

  • Bless you Brave, it's hard trying to adapt to this condition and I feel I'm still getting to grips with it as one day can be ok and the next not....so strange:(

    I hope you get sorted re the meds and so glad that you can express yourself on the site. xxx

  • mstr..........i totaly get one day great improvement and next day massive decline,??????very hard to get to grips i agree ,thankyou.

  • Of course you're not difficult, if you suffer with fibro then it is likely you have hypersensitivity to medication, which is probably why he said that. But he can't just put the burden back on you, he is the one that has to find a way to make your life pain free. All these questions you have, he needs to answer and take into account when deciding next steps.

    I can see you're lost but try not to think that everything will go worse, have patience with recovery, it takes months and months. You are in such a dark place now, I know, but may I suggest you don't fight it, just ride with it, because you're exhausting energy that is needed to bring you back to even keel. I know it sounds mambo-jumbo but this illness gets up in arms if we are low or stressed out, you need to give yourself a chance.

    As for heat intolerance, you sound like my husband who, although he doesn't suffer with lupus, has never been able to take heat. Our house is freezing as a result, I'm always walking about in several layers and blankets, while he is in shorts and a tee. If I try to put the heating up by one degree he goes all faint. If you can't stand hot bath, try lukewarm, the point is to get relief from the weight of your body on your joints, ligaments, tendons.

    When are you next seeing your rheumatologist?

  • On monday 21st ,weirdly i also suffer cold extremeties too ,cant win ,the heat thing is to do with my nervous sysytem dysfunction i think ?i cant regulate well and do not sweat easily ,so my core overheats .in the summer i also feel like i have the same symptoms but with weird skin sores very sparse on my face and chest from sun ,but i love to get a tan ,but i think those days are gone now ,?sooooo complex i am,and hate every min of it;(i do have warm baths ,and try to get to the local pool once a week to take pressure off body ,however the pool is cold and i seize up .my hubby is opposite ,he loves heat ,we lived in perth australia for two years up untill last june ,my system could nt take the heat and living in permenant aircon is not healthy,better off in this neck of the woods.better to add layers and get on with things than sitting under fake air all day paranoid to move cos it +40dgs outside.One thing i do notice,,,,,,the weather pressure affects me so much ,low pressure damp etc is horrid ,high pressure and clear is better.i wish i could take a pill to supress pain and lift mood without giving me side effects ?that would be fantastic,maybe i should invent one lol!thankyou for your time .You seem very calm with your lupus?you sound as if you have experience?brave;)

  • Dear Brave, my heart goes out to you, I hope by reading some of the comments, you know that how your feeling, we either are/have been there. I think we all hope when we are diagnosed, put on medication, that will be us in remission. You do sound very very low Brave, and depression and low mood are recognised as part of the condition.

    When in flares it takes all we have to get through day, and stress on top of this, does absolutely aggravate the condition. Being scared and lost, also is a scenario I particularly understand, and that is why this group is so vital, so we can be around people who do know.

    Are you scheduled to see your doctor or Rheumatologist soon? I would if you do one thing today, make an appt to see your GP at least, and write down in bullet point fashion, the top 5 things that currently are making your day to day unbearable.

    In the meantime, day at a time, and come and chat to us here if you need support.

  • Thankyou for your support ,great advice,however how can a G.P fix me:(im paranoid he looks at me like im a hypochondriac?arent we supposed to just deal with it and accept?im not accepting though?maybe if i was at least 58yrs but not 38yrs!yes there are people much worse but it doesnt make it any easier to accept ,i feel im only depressed because of the way i feel ,i was never like this in tha past <i used to get down when i was always flareing but i got over that as i knew i would come out of it in a week or so ,and then try to pace myself more ,but i havent come out really of this flare in 12months with just a steady decline,so thats why im scared,the slightest things knocks me ten steps back than the two steps foward that ive just spent two weeks trying to move ,its so exhausting ,i know its a progressive disease ,so maybe im expecting too much now?Do you have experience with antidepressents?my system is so hypersensetive that i worry if i took them i would wind up my nervous system even more?i agree i could use a mood lifter but at the same time i need something to settle my system not speed it up ,i suffer terrible nervous system dysfunction ,the list is endless ;(The connective tissue pain is awfull,keeps me awake ,its as if my tendons are on fire with pins and needles and insane stiffness and lack of movement range.Wow,,,,,ive really ranted hey?i like the bullet point idea ,thankyou so much and forgive my concerns ,we dont have a support group here in the channel isles ,small and ever behind the times ,but a very magical place to live;) thankyou so much lupus karen ,keep well in 2013 ,brave;)

  • so sorry your so ill brave i can't comment on meds or lupus havn't been diagnosed but i do know how your feeling:( and i can wish you a speedy remedy an d hope you feeling better soon x

  • Hello again Brave, to answer your question how can a GP fix you, the answer is he or she cannot, but what they can do, is at least talk through your concerns, especially your mood, and if that aspect can be addressed, it sure as heck will make day to day more tolerable.

    I think your hyperchondriac comment at some point we can all relate to, I went through stages of feeling like a nuisance, moreso when test after test came back negative, but we all know that the average time to get a diagnosis for Lupus patients, is standard as years.

    I now look at things in an entirely different way, if I need to see my GP, it is because something is wrong, and at the end of the day, without patients GP's would have no job would they? They are there for us. If you find a GP hard to approach, change to another one, I know its easier said than done Brave, but you know what, even if do that one thing today, and make an appt, guess what, you have taken charge, and got some control back, it is very empowering when Lupus can dictate so much our every day living.

    Obviously I don't know what medications you are currently on, and it would be wrong of me to comment on those anyway, but if you do see a Rheumatologist, sometimes tweaks have to made to medications, and your GP needs to see you, as if like myself, he will keep my Rheumatologist up-to-date, and as has happened, when things were not improving, she called me in after my GP wrote to her, and tweaked my meds.

    Anti-depressants are something that only a GP and you can discuss to be honest, but I will say my experience of them, is positive, and I am a lady who is super sensitive, and it did take a little while to find one that suited me.

    So if you have one little spurt of energy left, go pick up that phone and make an appt to see your GP, it will be a very positive step toward getting, hopefully, some relief from your current flare.

    Good luck.

  • can i say thankyou for taking time to reply and i hope this isnt taking too much out of your day?can i ask which mood lifter you take?I wouldnt know where to start and worry my gp will just chuck me on the cheapest one to pescribe?meds for me are .....codine (occasionally)paracetamol ,ibuprofen,ompromezole,i was on plaquenil but was soooo ill on it !he spoke of dmards???/but said i would probably end up very sick?i have no physio,no pain clinic,no support group ,and all family live on mainland and really dont understand lupus anyway ,and obviously as i was awalys full of ailments since 20yrs old dont look any dif at me now than back then even after a diagnoses that took years to get!ythankyou so much ,can i ask how long you have sufferd?

  • You are very welcome.

    The anti-depressant I take, is Amitriptyline, one of the older Tricyclic medications. I was prescribed this to not only treat my depression, but also as a pain reliever, moreover chronic muscle pain, and to aid sleep.

    I was diagnosed in 2009, after approximately 10 years of doing the medical merry-go-round. It is now felt that I may have suffered mild SLE from the age of 15, I am now 52.

    I also have Hughes Syndrome, and renal involvement as a result of undiagnosed SLE.

  • Thankyou,i was pescribed amyltriptaline a while back as a loe dose at night ,to help my bladder spasms,but i have an irregular heart beat so it irritates that.such a shame because i beleive its a good pain killer for lupus and fibromyalgia and bladder problems ,i wander if the SSRI antidepressents would help with pain?i beleive they have fewer side effects than the SNRI or trycilics?i think i need to speak with consultant?Funny you should mention 15yrs of age with lupus,when i was 15 i had a lot of pain and fatigue ,tummy trouble ,muscle twitches ,then at 20 it all really began and after a good few years of ill health ,was told i had M.E! then came sjogrens,then came fibromyalgia ,then UDMCTD,then pre clinical lupus (lol) then lupus .i beleive mine is a genetic thing as my had M.S and passed at 56yrs after a very long suffering,she also had overlap disorders but chose to just deal with M.S ,like she said.....nothing can be done .thanks again x

  • Brave, so sorry that you have all this going on and so little support at the mo....hang on in there because some of the advice above sounds so helpful. I think sometimes we have to hit that wall before we can start to move forward and taking actions.. Bless you and keep us up dated too xx

  • You guys seem so positive in your illness,.its nice to see;)))))i cant thank you enough ,i hope i can pass my knowledge on like you guys one day to others in need.

  • Thanks Brave, I'm still only a novice at this and over the last 18 months have also had some darker days and only just learning like Purpletop said in her comment to ride it as it does pass. Hope your manage to get an appointment with the GP xx

  • I can't tell you all what a relief it has been to read all your comments. I am going to join the lupus uk as i do not know anyone else with lupus. I started out with fibromyalgia and then was diagnosed with acute rheumatoid arthritis, that was about 10 years ago. Now they tell me I have lupus and have been put on hydroxychloroquine . Everyday is an effort as I dread the early hours of pain. Sometimes it seems as if nothing can help and I hate going to the doctors with the same old problems. Have just had a kidney scan as my white blood count is high but everything is ok. I do have a real problem with pain under my ribs on the right had side, as if a muscle is pulling when I bend over. Most of the symptoms I have have been mentioned in the comments given so at least I know I am not alone. Sometimes I wonder if I can go on this way for the rest of my life but I have to think of my family. Thankyou for listening

You may also like...