I know the answer to this question will be: 'We can't really answer this question!' ...........but please try!

I'm sure that I have SLE and am in the process of having tests done. During a recent flare I went to my GP begging him to either give me something for my symptoms, or write to the consultant to ask if he'd see me quickly. He told me that he couldn't give me anything as it would have to be prescribed by the consultant, but he would write asking him to see me. My 'quick' appointment has come through and it's not until the end of September! I'm now left waiting with absolutely no medication whatsoever. My first question is, what can I take over the counter apart from painkillers that will sort out my very painful neck and lower back?

The second question (and the one which I think you'll tell me can't be answered) is what is going on with my back? Does this disease damage it, or does it just irritate it? I'm left for all these months worried that the lack of medication will mean my back is damaged irreversibly? Can you have these symptoms for years without damage, or does pain usually mean something bad? Will taking meds take the problem away, or just hide it? Or am I just being a drama queen?

I hope someone can give me an opinion please!

21 Replies

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  • Hi Angelcake

    I really feel for you. Pre-diagnosis is a nightmare time as your mind tends to fill in all the blanks with often wild imaginative problems about your body. Please try and keep calm, for your own sake or your mental state will start to suffer.

    As I understand it, (and I'm no expert) Lupus mainly inflames the joints rather than damages them. I don't know if long-term pain does eventually cause damage but my rhuemy explained that once the flare is over, my joints will go back to normal. Which they have. Your immune system is attacking the soft tissue causing inflamation which is possibly why your back hurts, but of course until you get a diagnosis you won't know for sure.

    I'm not aware of any over the counter medication that can help your symptoms other than Paracetamol and Brufen. I do know that stress reduction, plenty of sleep, reducing alcohol and smoking and eating healthy will have a beneficial effect on your symptoms. Theres a blog by Dryad who's trialing a vegan diet which is quite interesting. A major trigger of Lupus is the stress we put on our bodies, be it environmental or emotional so try and rest plenty and don't commit to too much this summer.

    Your GP should prescribe you stronger pain killers so I suggest you keep going back until they do. It's inhumane to expect you to deal with the pain. But you will have to wait for a diagnosis before Lupus meds are prescribed.

    I hope this helps, I'm sorry I can't offer you something more immediate but keep using this site and hopefully somebody else may have some answers for you.

    Acorn1

  • Thanks that's helped to know that this is probably irritation rather than damage! I am only 33 and already feel like a pensioner, so have been worrying about how I'll be when i am a pensioner! As for taking it easy, I'm taking my two young children to Disneyland and am now thinking this could be hell! Perhaps while I'm there, I could find a 'magic' cure!

  • Hi there,my daughter was dxd with degenerative disk disease,scoliosis and osteoarthritis at 24 then finally at 26 with severe systemic lupus,multi system and also something else the doc's say they are missing.

    She has had epidural and nerve block injections into her spine which have worked wonders,she will have them until they no longer work then surgery.

    I would have to agree ,keep going back until you get some pain relief,go to another doc if you don't feel you are being listened to.

    My daughter saw many many docs before someone finally said,hang on a minute,this is not just excema,asthma,allergies etc.

    Unfortunatley by then damage had already been done,to the heart and kidneys.

    If you are in pain there are painkillers ,muscle spasm tablets etc that your doctor can prescribe without a dx.

    Have you tried a small heat blanket,cost about 20 pound,you can plug it in wherever you sit or lie at home.

    Hope you get some much needed pain relief soon.

    Sandy

  • Because SLE affects the joints mainly, it could be possible that the back and neck pain are due to poor posture and lack of the correct exercise. I had excruciating back and hip pain but after having an exercise sheet from the GP it has improved hugely. I had to exercise through the pain.

    I agree that it would be good to go back to your GP to see whether he/she could suggest some other pain killers.

    Its awful for you that you have to wait so long to see a rheumatologist. I remember when that happened to me years ago and it seemed unbearable.

  • Thanks so much everyone!

  • Oh, I really feel for you, the year before I was diagnosed seemed to go on forever. It is awful the wait that you have to endure. With me, although I was tired, I did find that mobilising my joints by (gentle) exercise, such as swimming, walking loosened me up and helped with the pain.

    As far as your GP goes, sometimes you have to keep fighting which I'm sure you haven't got the energy for. Is there anyone to help you? I kept pushing as apart from how I felt I had 3 kids under the age of 4 that I was struggling to deal with. Anyway, take care & keep strong.

  • I just wanted to leave a quick comment for Jaxcqueline how you battled with your lupus with three small kids is truly a miracle. I have no children & often find just trying to get myself ready through the fatigue & pain a monumental task...you are amazing!

  • Hi Angelcake, sorry to hear you are having such a hard time. I would phone your consultant and see if you can get an earlier appointment. If you are not sure who you are being referred to ask your GP/surgery. When you phone the hospital asked to be put through to Dr--- and you will probably get his/her secretary. Explain how urgent it is and you would like to speak to Dr ---. If the Dr is not in office ask when is the best time to ring. You may need to be a little persistent but sometimes you have to be direct.

    Secondly whether or not you have lupus the neck and lower back pain should be dealt with. I had physio for my neck when it was bad as well as

    NSAIDs. The physio took time but it did help. It may be you need steroids which your Gp can prescribe but it sounds as if he is reluctant to do anything until he knows for sure what it is. A number of years ago I had awful flare ups with swollen joints that was definitely caused by lupus and helped by steroids but the more recent neck pain was awkward lifting and helped by NSAIDs and physio. You are not being a drama queen, you just want someone to help. I hope this helps x

  • I have to agree, keep fighting! It shouldn't have to be like that,but from my daughters experience,she finally got to a stage where she thought,only she knew how much pain she was in,she felt as if she was in the wrong,but one day she got it into her head that she needed to keep ringing cosultants secretaries,keep going back to the doc's when she could not cope with the pain,she felt like she was being a pest! But now she sees a heart,neuro,dermy,renal, and m.s nurse, so she went from seeing a g.p that wouldn't listen to seeing many people who are all trying to get to the bottom of her probs.

    If you have to ring every week,or go to the g.p every week,don't feel like a pest,my daughter got her inital dx by going to our local walking center out of hours,with what was though to be yet another skin infection,the doc there gave her antibiotics and steroids,also told her it looked to him that she had lupus.

    She had never even heard of it before,it is a great idea as someone said,if you have someone that can go with you for moral support,it helped my daughter,she's 26, but when you feel so unwell you don't have the energy to fight.

    I always offer to go with her,she came with me a couple of years ago when I was dxd with breast cancer, it helped immensely.

    Good luck,take care Sandy.

  • Thanks so much everyone! I've already seen the consultant rhuemy as this all started with what they thought was carpal tunnel syndrome symptoms, so I was already one of his patients so I thought I'd get in pretty quick. I got the GP to ring him but when I hadn't heard after two weeks, I did ring the consultant's secretary myself and beg to be seen. They did send an appointment, but that's the September one!

    I know what you mean about being tired and looking after little ones. I have two boys, 4 and 7 both of whom are on the autistic spectrum and have seriously large amounts of energy! I find it hard to be enthusiastic about taking them to the park or out on their bikes when I'm so tired. I find myself searching for a park bench to sit on! I don't know whether I'm coming or going as between the three of us we have endless appointments and I have to write them all down or I forget who's going to which department of the hospital! I get absolutely no help from anyone, I do it all myself and always have. I think it's because my family don't ever do anything to help me, that I'm so strong willed because I know that if I don't get out of bed and look after everybody, nobody else will!!

  • I do feel for you,and can only imagine how you must feel maureenpearl's advice is great as she has been in your shoes also my daughter feels the same as you,her girls suffer from asthma sevete excema,and if she isn't at the g.p or peadiatrican with the children,she is at the g.p or neuro,dermy,heart,m.s nurse,vascular consultants for herself.She just feels like she is fighting a loosing battle. At the moment the tests are weekly,bloods urine full body c.t next week,the list goes on.

    I hope you get some help real soon,take care, Sandy.

  • Hi Angelcake,

    Before I was diagnosed with lupus SLE I was told I had ME in the Nineties. I also had two young boys who came under the Autistic Spectrum disorder. It would of been difficult to look after them during the day if I did not have the support of the health visitor and an organization set up to help families with children and adult with disabilities in my area.

    A carer would come and take my boys to the park or just sit and play with them while I go back to bed, or go out with my husband. I just paid a small fee per hour. Later I had a social worker to help with respite care for one of my boys.

    Please ask for help from your Health visitor or GP as you need the help and support on a daily basis and not just when you are having a flare.

  • I know it's hard but just keep going back to your GP,they should prescribe you stronger painkillers.

    Pre diagnosis I was given tramadol which helped.

    Keep at it and good luck x

  • Hi Angelcake - as you can see, we are all rooting for you! (I nearly typed "rotting" .....). You will see if you read other posts on here, that one of the major problems we have to overcome is lack of informed support from the medical profession here in the UK. (America and Australia are far more advanced than we are here...).

    I used to be a Med Sec for many years and then worked in a Pharmacy for 5 years as a dispenser, before the SLE meant taking early retirement. You can safely use an NSAID gel or cream externally on the parts of your body which are painful. A good hot soak in a herbal bath (Lavendar) can work wonders too...... Try not to stay sitting (or lying) in the same position for long periods of time. The right pillows for your head at night are ESSENTIAL.

    A useful website is: nhs.uk/choiceinthenhs - where you can type in a search for "Auto-immune specialist consultants" within your area - to see if there is one with a shorter waiting list than the one your GP has referred you to. Things have changed a lot with referrals in the past year - now, you can even go way out of your area if there is someone more suitable to your needs.

    You will still need to see your GP to write the letter to them, however. You can even change your GP in this way too - but only if the one chosen is accepting new patients on their list.

    Hope this helps!

    p.s. I would be unbearable to live with if I didn't take Tramadol 2-3 times a day!

  • hello angelcake

    i too have gone through a simular situation last year when i first went to the doctor with back pain and neck and shoulder pain along with upper arm pain,of course they didnt worry just said take pain killers however after a lot and i mean a lot of doctors appointments my gp FINALLY did blood tests which come back positive for dsANA so i was sent to rheumy in january and was then diagnosed with mild lupus.

    But on my last hos visit my biggest complaint was my back and shoulders and neck pain which i have always complained about and found my neck would get very painful and stiff especially in mornings or after doing chores even after long driving periods.

    so he then said that he now doesn t think i have lupus after all but something else,which has left me feeling like you have found filling in the gaps too.

    im back to my rheumy on the 19th june and will really push for a result with this ongoing back ache and neck pain but my point is that i too have constantly worried my body is falling apart and getting more and more damaged but my docs don t seem all that worried and so i have to try and put it to the back of my mind and trust them.

    it is very hard as like you i just want some answers.

    good luck

    debs

  • All the advice on here is so good and I really appreciate everyone who takes the time to try to help me x

  • Hi Angelcake

    I'm new to this site as have just been diagnosed with lupus SLE. I've had symptoms for 6 years and have only just had it diagnosed when I could bear the pain no more. I too am in my 30's and realised I really didn't have to put up with this pain. I had an MRI and then blood tests which proved positive for lupus. You need to push for blood tests... My consultant told me GPs are scared of lupus... not much help is it?!

    I can tell you that a frozen bag of peas wrapped in a tea towel should ease your neck and back pain... it worked much better for me than a hot water bottle. Don't leave it in the same position for more than 10 minutes though, keep moving it around and nurofen is good too but make sure you eat with it.

    I hope this helps and I hope you get some help soon.

    Good luck

  • Thanks for thd advice keepsmiling. I've read one of your posts about the sun affecting you and wanted to know the same question. I don't get a rash, but is the sun a trigger anyway?

  • AngelCake, i dont get a rash either, i was diagnosed with SLE 3 years ago. I was told to avoid too much sunlight, you can enjoy warm weather just have to do it in moderation. I used a high factor prescribed sun block. I dont suffer with my back or neck (touch wood) but do suffer with my knee's fingers, elbows and wrists. I also suffer mo so when its wrong time of the month. I can always tell how bad my day will be by checking my hands when i wake up. The knuckles on my fingers swell to varying degree's. If i have 8 fat fingers and 2 stubby thumbs i know its going to be a bad day.

    I also find that not many pain killers have worked for me. When my hands or feet are bad i find lying in a hot bath (as hot as your body will accept) helps, and gentle excercising the joint in the hot water once you start feeling more comfortable. Reduce all stress as well, as stress is a cause to flare ups.

    Hope this helps.

    Hayley

  • Thanks Hayley, that's good to know, reducing the stress will be the hard bit!

  • Our hospital has an appointment line have you tried getting a cancellation even if it means ringing every week you just might get in quicker, good luck

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