Im really sorry in advance for the long write up but if you do manage to read through it all, thank you in advance
I am wondering about any of your own personal suffering from Lupus and thought that if anyone could pass on some advice.
I was recently diagnosed with Lupus after 10 years or more of suffering (I am a female now 21 and living in the UK), having suffered since i was a child. I have spent what feels like 25% of my life in the doctors surgery and hospitals having them fob me off with the same tests over and over for years until now, now that it has reached the point of being too unbearable to put up with, they have found the cause.
I am suffering all the time with tiredness, muscle and joint pain, hair loss, rashes and itchy skin, anxiety, stomach aches, nausea, heart palpitations, breathlessness and so much more. The last 3 symptoms have only been in the past few months and have been getting worse rapidly week by week-they are what finally made me push the doctors to believe that it is something other than my under active thyroid that is causing it.
It's causing me financial problems where I am struggling with work due to the constant pain and fatigue I am having. I do have a job which is part time and luckily my managers are extremely understanding to my problem as I have had to go home on many occasions. I am also at university which doesn't help matters!
I suppose I am wondering if anyone could help me out with what to maybe expect in the near future (what with the symptoms getting worse) and where you are with yours? How do you cope? are there any things you find make it worse? foods that may make it worse? etc. I understand this is a very broad question to which no one can give me an exact answer to, but your own experience would be much appreciated.
I have already decided I don't want to accept any medication for this, I am well aware of what the complications are likely to be and how naive and silly this may sound, but I refuse to be put through any more unnecessary pain for no reason (due to the fact that it can't be cured).
If you did get this far, Thank you!!
Louise
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louyoung92
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Hi its very sad to hear how long you have been suffering, you are also brave to have decided against medication, I wish I could have also been brave enough to do this.Being on medication hasn't made all the pain and stress go away, I think ive actually got worse, but can't confirm if this is the lupus or meds, but it has made me very determined to try and lead as much of a normal life as I can, for the sake of my child and family. I can't give up this easily.
I hope that will find some comfort in whatever life style you choose, its your decision and you have to be happy with it. Take care. Xxx
Thank you for your kind reply and thank you for taking the time to read the large amount of stuff I wrote! I hope you can find some way of being comfortable with limited pain and I hope you are able to live the normal life you deserve.
I'm sorry your diagnosis has taken so long and I hope you find some peace in knowing the cause. I was diagnosed at 12, spent many years in remission and have now had issues for the past seven years. I am 42. Like you I really hate drugs and do everything I can to manage the symptoms with diet, supplements, and regular exercise. However I have reluctantly gone onto medication and I have to say I am glad I have. Most important is that you make the decisions. This group can be very helpful. I hope it helps you. Take good care.
Thanks for your post. Believe it or not, we all hate our medication. Some has side effects, some doesn't. For many the drugs give them a quality of life they have been missing for years though. Average diagnosis time is 7 years so your story is not unusual. More effective diagnosis and treatment now means that our life expectancy which not long ago was 10 years after diagnosis has now changed and the majority of lupus patients have full life expentancy, with appropriate treatment. It sounds as if your organs are being affected so I guess what you need to be thinking is something that is very hard to do when you are 21 and feel indestructible. I have a son of 14. I take meds which I loath but I fully intend to still be around when I am 90. Life with lupus is v different but it can still be wonderful. Think hard about your decision. Talk it through with your Rheumatologist not your Gp. Good luck xx
Hi, Im so sorry to hear about your struggles, I too can relate to you - I am 39 with 3 kids and was diagnosed in February this year. I too hated the idea of drugs but felt so poorly I gave them a go as I just wanted to feel well again. It took 6 months to feel the effects of the medication but now I feel like I can be a mum again to my kids. I've even started running again ( not the amount I used to do but it's a step in the right direction) My joint pain and tiredness is so much better. I've still got major hair loss - completely bald! ( but I can cope with that as it doesn't cause me pain) and I still get flares which seem to come out of the blue and knock me for six but I enjoy the times when I'm feeling ok. I make sure I walk the dogs every day and I try to eat well and avoid alcohol. This all seems to work for me but everyone is different. You'll find what works for you. This site has been a God send. So much support and help.
I wish you all the best. Stay positve. Take care xxx
Thank you all for your replies, they have been extremely helpful. As you can imagine, I am still waiting to be given a date to see a rhumatologist. Things do seem to be getting worse, very quickly but I will take everything you have all said on board.
It means a lot that you have all taken the time to read through and reply, so thanks again
Hi,my story is very similar to your and the others. I am now 66 and do not think I would have made it this far without the meds. and pure stubbornness! One doc. told me at 40 years old (when I asked for pain control) to be grateful I was still alive and not in a wheelchair. I swapped both Hospitals and doctors and have been 'plodding' along with ups and downs ever since. Yes there are bad days and Yes I get fed up, depressed at the meds. and their side effects. BUT I am still here, I go swimming 5 days a week to help my joints, I had to have a new knee 5 years ago and a Major spine opp. two years ago, I want to see my grandson grow up so I fight with everything I can. Get Fighting it, don't let it win. Good luck my young friend.xx
Hi. Im 21 and female from the uk and I admire u for your decision. Please get in touch with Lupus UK as there is a young peoples group that meets in london and has a fantastic network of people our age that have supported me on so many levels over the last year! Also, depending on where your from, see what u can do about contacting one of the adolescent rheumatologists that practice at a few of the london hosp depts. Again, get their contacts from Lupus UK. Best wishes
Hi, Louise: I'm going to echo what everyone else is saying: don't give up on the drugs - not least because they find new medication every single day - and who knows: with the increased knowledge about gene technology they might even come up with a cure! I for one will never give up hope until the day they set fire to my Viking ship . . . Remember, thirty years ago a lupus diagnosis was practically a death sentence; now most of us can expect normal life expectancy - and no, it might not always feel worth living that long, what with the pain, swelling, ulcers, rashes, etc. etc - but I think you don't join a forum like this if you're not a fighter to begin with, do you? This is a pernicious disease, and there is no doubt some of the drugs can feel like they're making matters worse, but some of them can be very effective indeed - I would not now be working (or moving, most probably!) without Plaquenil and Celecoxib. Not everyone suffers the same side effects, so don't rule them out without a lot of discussion and research. Personally, I'd rather have the weight gain and the diarrhoea (sorry!) but be able to get out of bed . . . I think foreverafighter's suggestion of joining LupusUK could be really helpful for you (and of course we're always here to sound off to!); it'd be great to find out how you're doing. I always recommend Triona Holden's book Talking About Lupus as a good place to start. Hazel's an excellent example of what we can achieve through stubbornness and the will to succeed. And swimming is the best exercise any of us can do. So hang on in there and look forward to the god stuff: there will be plenty, of that I'm quite sure!
Welcome to the community. I hope you find it helpful. We have a very supportive bunch of people on here
Please let me know if you need any information about lupus. We have a free information pack that I could send you? If you'd like one, just send me a private message or email paul@lupusuk.org.uk with your name and address.
I'm going to echo what quite a few people have already said on here, and that is please don't completely dismiss medication. Some of the treatments for lupus are very well tolerated with few or no side effects, and they can really help improve your quality of life. Lupus can cause irreversible damage to the body and if it is not being controlled by treatment it can be dangerous. I'd recommend that if you have specific concerns related to treatment, that you discuss them with your consultant when you see them. They may be able help put your mind at rest on some matters.
A Foreverafighter mentioned, we do have a couple of support groups specifically for young people (16-25) with lupus. They tend to be pretty informal and are a chance to just meet and chat with people that have had similar experiences. The meetings are in London and Cambridge. If you'd like any more information about either of them, please let me know.
With regards to tips on managing lupus that you ask about, our information pack has a few and so does our website lupusuk.org.uk
Lupus is different for everybody, so it is often a good idea to try and identify things that work and don't work for you. Try keeping a symptom diary, with a record of things you've done that day and what you've eaten. You may be able to identify trends of certain activities or foods that trigger your lupus, which you may be able to the avoid.
If you need anything, please continue to ask people on these forum and also feel free to contact me.
Hi - I agree with everyone else in that it is your choice. But to make that choice you need to find out as much as possible about the disease first, then weigh pros and cons of whether to stay as you are or take medication.
Regardless of the level each of us has lupus (mild, moderate or severe), this disease is a progressive disease, I.e it goes worse all the time. Each flare damages the body and as lupus impairs the ability to repair fully, it means that every subsequent flare will not only damage further but repair only a part, leaving the remaining damage exposed to future attack. And I'm not even going to mention the emergency situations where the attacks are unpredictable and serious.
Medication is there to slow down the process and dampen down the attacks, both in frequency and severity. With the right treatment many sufferers are able to lead a life at home rather than in and out of hospitals, get to work and have careers and children. Probably every sufferer has done the balancing act between the side effects, the poking and prodding and regular blood tests against something that will not stop hurting, no matter how much we wish for remission.
I know how difficult this decision is, I wish you all the courage you can muster, this illness is not a fair one.
Hiya, i know exactly where your coming from your so young and confused about your future. Your story is very similar to mine, it took me about 7 years to be diagnosed. In the end i got very ill - i had same symptoms as you combined with heart palpitations, night sweats , breathlessness would come in bouts and was very scary. Anyway i ended up in hospital for several weeks as lupus had affected my heart, lungs and liver. Like you i refused treatment when i initially had symptoms because i was afraid of side effects of meds, but i soon regretted it! I really thought i was dying in hospital and it took a long time to get my body stable. I now have irreversible damage and scarring to my lungs causing restrictive lung disease , my heart is also affected. I have the lung capacity of a 68 year old - I'm 32. I now suffer chronic lung pain, breathlessness, its horrible and frightening. This is the reality of what can happen i just wish my lupus was treated sooner and maybe i would be a lot better now Please think very carefully before refusing treatment your so young and you can stop it in its tracks - protect your healthy wee organs, Take care x
Hi Louise my name is Zoe and you can message me any time in 22 and was lucky to be diagnosed at 7. As I was diagnosed so young the decision of medication hAs always been made for me and since I have been old enough I have just continued with that. When I was younger I managed around 5 year drug free with little effect of lupus other than tiredness and general aches until 3 year ago when I was hit with the flare of my life I am now on some really serious meds and tbh I don't no if they are helping but I do no I get worse before my infusion is due and I'm lucky none of my major organs are not yet involved other than pain. I think you should wait to talk to the rheumatologist as maybe the non side effect drugs may work for u I have had a chemo type treatment as I'm worried if this could have caused damage unseen but I just want to be well. Please chat if you have any questions I have properly had anything they throw at u I have found it really hard to loose my health I hate lupus but I have to go on I'm a bigger former self but I am stronger i just wish I could be well I hope ur ok x
Thank you all for your kind replies, the time you have all taken to read and reply to my posts means an immense amount to me. I am due to have a second opinion on Thursday from a different doctor as although my liver was showing a lot of protein, the doctor (after saying he was 99% sure I have lupus) has said the recent tests have come back negative! All my symptoms amongst everything else are still pointing to lupus but has anyone ever had this said to them? I'm so confused, I don't know how to think or feel.
Thank you and I hope you're all feeling as well as you can be!
Lou
I would get used to blood tests saying one thing then another, i have the exact same that's y they keep messing me about. Just keep strong hunnii x
Hi so sorry to hear all the problems you have been having.I don't have lupus but my husband has, my 20 year old daughter Was diagnosed when 11 and my 17 yr old just been diagnosed.my husband is well at the moment my older daughter has been in remission for several years and is on hydroxychloroquin my youngest daughter is unwell at moment she has raynauds ,livedo,photosensitive,heart palpitations to name a few.she is just starting hydroxychloroquin I am hopeful she to will get better.how are you now?
Hi am 21 year old female I was dignose with lupus at age 10 I was taken 12 medacation each night I had stopped eatting sodium and stopped being in the sun but matters keept getting worse I end up getting fed up with all the medacation all the doctors rules so I just stopped going to therepy doctors visits medacation ... and to be honest with all yah I feel way better I keep a diet do exercise and just feel way better .. but everybody is different so think about it take care ..
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Please think very carefully before refusing treatment your so young and you can stop it in its tracks - protect your healthy wee organs, Take care x
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