hi all, I feel so fed up and frustrated and I don't know where to turn. been on Quinoric for about 9 weeks now and I feel worse than ever to be honest. I am not capable to work which has been the case for 2 and a half years due to a condition called cyclothimia/bipolar before I was even diagnosed with s.l.e in April this year. my e.s.a. benefit was stopped in november which I can't understand at all as my health is much worse now I have lupus aswell. I struggle to do any recreational things. I play golf, like long walks and short mat bowling. I have played no golf this year, no long walks and struggle to play my bowls. when I play bowls, I am buggered the following day feeling I have been 10 rounds with Mike Tyson aching all over and so fatigued. I feel I am losing everything along with my memory which is getting worse along with very low concentration levels. I have to read sentences over and over again and still information doesn't register. I was on naproxen and paracetamol which make no difference anymore. I was put on codeine and this did nothing. I don't take anything now apart from over the counter panadol which is really a waste of time. I am a regular at the doctors and seem to get nowhere. sure I am thought of as a hypochondriac and so I hate making appointments. I have phoned rheumy nurse helpline twice and I phoned the 3rd time last week. this time, no call back so I think they think I am a pain in the arse aswell. I struggle doing everyday things like showering, combing my hair, reaching for things as I ache all over and feel so weak. I have no strength or energy anymore. I feel I have not got much of a life. sorry to moan but have to get stuff off my chest and try to get some feedback on what to do next in my best interest. thanks for reading. x
Fed up: hi all, I feel so fed up and frustrated and... - LUPUS UK
Fed up
Hi Mandypandy.
I am on hydroxicloroquine for 10 weeks and my rheumy said it can take between 3 to 6 months to work.
It can be your case. My joint pain almost disappeared abd my muscle stiffness has improved a lot. Today i managed to walk for 45 minutes which is sth great as i stopped to do it last August.
My advice to you: calm down, be patient, try to not put stress on you and accept that you have your health issues. This will help you psychologically.
Take care.
that's the trouble, with all my other problems on top of lupus, I am more stressed and get so short tempered. I feel I have no life at the moment battling with this, tinnitus which is worse than ever, misophonia/anger towards certain sounds, loud noise etc. driving myself mad trying to cope with it all and getting so snappy with people. x
I can't help very much I'm afraid, except to say quinoric can, and does, take longer to work. It was six months in my case.
I hope you don't mind asking, but how well is your bi polar condition controlled? On the whole, mine is better than it has been for years but I'm aware my physical health is making it swing back and forth.
Hugs to you x
not brilliant. like you say, symptoms of bloody lupus gets you down. I think it's ridiculous having to wait so long for medication to work. I have been given nothing else to help me in the meantime and since being on Quinoric, I have felt worse than ever. getting really pissed off as I don't feel or want to do anything and if I do it's bloody hard work. sorry but my anger levels have risen a lot too. xx
Yes, the lupus is a downer - and I think that can be one of symptoms anyway. It's very hard to wait for the quinoric to work, but please stick it out. I didn't think I noticed anything after the six months but others did.
If you feel the depression is getting worse than you have known and perhaps over and above what the lupus causes, please see your GP or whoever helps you on the psychiatric side of things x
my irritability is getting worse. very short fuse. x
For me, personally, that is a sign of an upper or downer on the way. I'd get checked if it were me. Last thing either of us need is a double whammy x
Hi mandypandy
Sorry your having such a rough time of it!. It's horrible not being able to do things we've previously enjoyed before lupus arrived!. It's what a lot of us have had to come to terms with and find alternative things, me included!. Not easy to achieve but if you can then it helps.
Citizens Advice will help you with sorting your ESA out. It's an awful added stress you can do without!.
Sometimes a short course of steroids can be prescribed to help with symptoms until new medication kicks in. Is this something your GP could agree to for you?. Worth a try!. I do hope the quinoric helps you, it's hard waiting for it to work as we so need quick help. X
I have been in steroids. the first course when I was first diagnosed made me feel like a new woman. I had a second course when the steroid injection didn't work but they didn't have the same effect. I need to see somebody as things aren't good. all I am on is Quinoric and they are giving me stomach problems which my I.b.s. had been dormant for years. tinnitus is ten times worse also. x
Manypand 1969
I am so sorry that you are suffering so badly.
Many of us have felt that GP, and or meds aren't working in our best interest, at times. We also feel as though, (well experience), that all good things are slipping away from our lives. At such times, it is only natural that we feel so low.
I had a similar experience, that period in my life, was so desperate. Looking back, that desperation, isolation, and,, swinging from low mood, to anger, to despair, I think anger was what drove me on.
I realised that I was grieving for my old life, the old me, the one I knew, and was comfortable with, I was strong, independent.. loss of health, is like other loss, we grieve. So, please don't beat yourself up, get some books. Change everything you have tried. I even changed my GP, after 28 years same practice, I moved.
I read any book I thought may help. I used that lonely time, to get to know how other people came through extremely challenging times. Some of their stories made me weep (I was also crying for me), then, I searched the internet. I came to HU. I was never alone then.
Getting tips from other sufferers really helped me.
I also joined BSSA (I have Sjogrens), there, I gained knowledge, made friends. I go to meetings, I phone people. I challenge myself, everyday.
Anger can be good. Use it to your advantage. You know what you need. Make a list. Then make a plan, who can help? Ask questions here, join groups, I joined a new church (older friends, even from church, didn't get my illness), reinvent yourself. Mandypandy1969, a person who is on a new path, learning new skills, how to manage chronic health issues.
Our lives, may be a struggle. However, we meet many great people we would never have encountered. We learn so much about life, about ourselves.
No, none of these changes are easy. But, we must bear what we are given, and come through. We owe it to ourselves. We have life, we have breath.
None of the above, is intended to offend, if you feel you can't help yourself, more than you have tried, please, please, take someone with you, and ensure the GP hears you need help.
Good luck, many wishes for joy to return to you, despite your pain and suffering.
thankyou. x
Hi Mandypandy,
So sorry things are rubbish for you at the moment. The Hydroxy does take a few months to work so hang in there with that - I noticed a big improvement in energy then (although initially I felt so grumpy on it that I nearly stopped as I didn't have the patience to be near anyone, but that got better!!).
Sadly it seems a part of having lupus for most of us is that some doctors will dismiss us as hypochrondriacs. You know what the disease is doing to you and how much it is affecting you so I suppose we have to learn to just keep asking for help from them and hope to get one who understands (as many do). It's easier said than done though and it's still one of the things I find hardest after many years with the disease but don't give up. I decided recently that I no longer cared what they thought as long as I am getting the medical care and treatment to stay as healthy as possible for my children (well I try not to care!). When we feel in a dark place with the pain and disease we can think that they are ignoring us because they're fed up with us or don't care but it may just be that your rheumy nurse has lost the message/passed it on and someone else lost it etc.
Have you had bipolar for much longer than the lupus symptoms? I have been diagnosed with NPSLE (neuro-psychiatric lupus) and so have had many conversations lately with neurologists and rheumatologists about it and read all the recent research. Many people start of with this type of lupus and it is sometimes incorrectly thought to be a separate mental health issue but can be the lupus attacking the brain and nervous system. Some of your symptoms especially the forgetfulness/ lack of concentration/ extreme fatigue and mania/depression are on the list for NPSLE.
If it helps, I had a flare this May and it felt like every part of me was being attacked, my physical skills, my brain, my sanity (seeing things that weren't there), my behaviour (laughing hysterically and inappropriately or crying, being really silly), extreme and awful fatigue that made me feel there was no point being alive because I couldn't do anything. I was too ashamed that I couldn't control any of this and that it had upset my children so much (well some of it amused them!) that I didn't tell anyone. I told the rheumy some parts and they diagnosed NPSLE and after high dose steroids it was like a dark tangled net in my head started to disappear and most things resolved within a WEEK. The fatigue is taking longer but steadily improving and my concentration/ memory is still not great but I'm only on 15mg steroids now and feel almost normal again so please realise there is hope of recovery. I saw a neurologist yesterday and finally opened up about some of the more embarrassing symptoms (some I'm telling nobody!) and he said none of it was unusual in NPSLE, he had seen many people with it and there's a good chance of recovery.
I'd get a rheumy appointment/ insist on speaking to the nurse and ask if someone can check you for NPSLE? If not, you could ask your GP for a few weeks of steroids and see if you notice a difference? I had 40mg for a month or so then down by 5/10mg every month.
I hope you feel better soon, please remember there is hope that you will get into a period of remission
xx
rheumy nurse suggested coming off hydroxy as I am feeling worse since I have been on them this last 9 weeks. I have to go back to g.p. as she couldn't understand why my arms and legs feel like lead weights when picking things up/walking up stairs etc. I have been suffering with a horrendous migraine today and all my stiffness and body aches are even worse. I don't think it is lupus to be honest. when I have read up on my symptoms it sounds more like fybromialgia. the nurse kept mentioning it was more like pain I was describing. I am totally confused and dreading having to see a g.p. yet again. I feel hopeless now after speaking to nurse.i have to ring her back on Monday to let her know if I feel any better coming off hydroxy. i am so confused. xx
Hi Mandypandy1969,
Thank you for writing on the forum, this is a great way to help relieve any worries and anxiety you may have.
If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk . We published a factsheet that contains services and support helplines which may be of interest to you: lupusuk.org.uk/wp-content/u....
Did you try appealing against your ESA outcome? If you would like literature regarding ESA i.e. reconsiderations, appeals and the support available to you, you can email me.
There are a variety of lupus-friendly exercises a person can do which is discussed in our blog article on lupus and exercise: lupusuk.org.uk/lupus-and-ex...
Remember to not push yourself too hard as it takes time for the body to ease itself into a new routine of exercise. It is advised to consult your GP or physiotherapist before undertaking new exercise regimes to ensure you can gain the most out of them.
Stress is an important trigger of lupus, we published an article on our blog about stress management and relaxation which I hope you find useful: lupusuk.org.uk/stress-manag...
Fatigue is one of the most common symptoms of lupus; it affects around 90% of lupus patients. We published an article on our blog about 'managing fatigue' which contains helpful tips and information which you can read here lupusuk.org.uk/managing-fat...
Have you thought about reviewing your pain management system with your doctor?
We published an article on our blog about pain management which contains helpful tips and information which you can read here: lupusuk.org.uk/pain-managem...
Confusion, difficulty in articulating thoughts and memory impairment are common symptoms that are associated with lupus; it is referred to as ‘brain fog’ or ‘lupus fog’ by people with lupus. Stress, anxiety and fatigue are a few examples of the causes of brain fog, you can find out more about this in our blog article ‘Coping with Brain Fog’: lupusuk.org.uk/coping-with-...
Do you have any family or friends who would be willing to help you manage day-to-day activities better?
Best wishes, Chanpreet
hiya. spoke to my rheumy helpline nurse yesterday and she said to come off hydroxy due to me feeling worse. I had been on it for 9 weeks and slowly over the weeks my symptoms got worse. she sounded confused as to why I had such heaviness/weakness in my arms and legs along with severe fatigue. she has told me to ring her back next Monday to let me know if I feel any better being off it. I have been told to see my g.p. again also and have an appointment with the g.p. who first referred me to rheumatologist after a high rate was found in one of the blood tests which was to do with immflamation in my body. she asked how old I was and i said 48. she said I was too young but never said why I was too young. does she think it could be something else? getting more and more worried which is causing more stress. I am waiting for a decision on my appeal letter which i have been told a decision will be made by the 5th of December. thank you. xx
You're welcome.
As we are not medically trained I cannot comment on why your age may be relevant to what they are asking/testing but please keep us updated, wishing you all the best.
Ah, MandyPandy1969,
You are getting lots of support and great advice here.
From your very recent post, it appears, that at least some of your symptoms, are indeed, anxiety ridden. And, why wouldn't they be? What a lot of stress you have been, and are, enduring. Bless you. I feel your pain.
I became very unwell, nearly 3 years ago. Interestingly, it is only, on reflection, I can see that stress was piled on to me, at one of my most vulnerable times. I was in a lot of pain, body rashes, etc, etc... as I began to gain a little strength, I decided to have a minor op done, privately, without anaesthetic. I had been diagnosed with a hiatus hernia, some 25 yrs earlier.
Private hospital required a written diagnosis before op. Crazy medical system, meant I had to visit GP, to get referred back to hospital consultant, to get letter typed, by his Secretary, to be sent to me, so I could take it to private hospital, for the op to go ahead. I know! Crazy!! During that process, I was told (after 25 yr diagnosed, me believing), no hiatus hernia (by the very consultant who diagnosed the hernia!).
I was referred for ultrasound to prove, then had an emergency call, to attend for MRI of my LIVER! This news was horrific, I was always asking GP to keep an eye on my LFTs because I was constantly given increasing amounts of pain relief meds. (A pharmacist, 3yrs ago, told me, that my sudden ill health was probably due to being over prescribed pain relief meds (for prolapse discs and sciatica), (which were immediately stopped by hospital consultant, when I finally collapsed), and over prescribed thyroxine, for thyroid meds, (which was twice reduced by GP, when dermatologist suspected).
I tell you the above, because, I now reflect, and understand, that anxiety over my misdiagnosis, and fear about my liver, caused a huge shock to my system. I was in a state of utter disbelief, and despair, especially, when it then took 3 months, and a lot of my time, and effort, badgering the hospita,l for MRI results. I imagined every awful scenario going!
Thus, I can see, how your anxieties, (especially, given you are in pain, not well), are feeling insurmountable. I urge you to get an advocate. This is what I could've done to save me so much stress, piling on top of stressful situations. I attended every appointment alone.
You need help with dealing with your health worries. You also need help with your monetary issues. Don't rely on yourself, because you haven't got the strength right now. Your body, mind, soul, is screaming at you, for rest. Always, take someone with you, to each, and every appointment.
Trawl the net, speak to CAB, family, friends, really, truly, confide in your nurse and your GP... tell them your worries are genuine, your anxieties are your natural response ... that you need help and support, because you do not have the strength at present..
At first, i bottled everything up... my fear and spiralling anxiety, could have caused me to break down... I felt close to a breakdown.
It was only when I started looking for help and support, reading, trawling the net, being open, and Frank with medics, that I began climbing out of despair... friends on HU, BSSA, good people, helped me to regain confidence in myself... I make no apologies for getting overwhelmed, I have been known to tell the occasional medic, if I appear anxious, its because, for some reason, I feel nervous with you...
When I have debilitating symptoms, or see a particularly discompassionate medic, I never attend alone..
Good luck. X
thankyou. I am taking my mum to my next appointment with g.p. x
I'm so happy to hear you have your Moms support. X
thankyou. x
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