Hi everyone,
I have been going to write for a few weeks but keep putting it off.
I’m really struggling mentally at the moment.
Managed to push it away again and again but it’s come with a vengeance today.
Desperate to cry but it won’t come.
Fed up with lupus symptoms, rheumatologist not listening (because the blood results are stable 😡) being overweight, in pain, poor circulation etc
I have so much to be grateful for but I am so far down a dark hole
Just needed to tell someone xxxx
I'm glad u posted Greentomatoes 🤗 you're not alone..ok? Living with chronic pain takes so much out of us doesn't it..all day every day?
U say your rheumatologist is useless..u could always ask for a second opinion. Some rheumatologists just go by blood results alone n it sounds like you've got one of those. Do u have a good relationship with your GP? U could ask for referral to another rheumy..although I appreciate it's so chaotic at the moment that u probably wouldn't get seen for months.
U said that you've managed to push these feelings back a couple of times but that it keeps coming back. Is it anything specific or generally feeling low? 🌈😽😽Xx
Thank you Krazykat 26,
I think you are right about another opinion. I’m frightened to go to another in case they make me feel crazy, do you know what I mean?
I suffer from anxiety. Always have and I was told for years and years that my symptoms were due to my anxiety.
I just keep going and going, work, kids, husband, family etc
I just feel I need to stop
But if I stop no one will cope cause I am the “do-er”. It has always been this way, even since I was a child.
I just want to stop, get off
I know you all understand as you live with this too 💖💖
I feel I’m screaming inside
It will pass
Thank you for listening
Means a lot xxxxx
Oh yeah...totally get the SCREAMING inside!!!So you're a mummy too..hard job in itself..with many rewards of course!! 😉
As far as the rheumys concerned..if this one is bad..another one COULD be better?!?! 🤔 When I feel down I only see the dark stuff n positivity goes right out the window so I understand what u mean!!
Work, kids, husband, family what support do u get from them? Sometimes when u do everything it kinda becomes the norm for them n they then expect it. If u got young children then obviously they just eat, make mess, cry, n give loads of love n chuckles..but what about husband n rest of family? U don't have to answer these questions but it might give u something to focus on..for instance if u ask for help..how do u get that help? Can u ask for help in the first place?
Anxiety is part n parcel really of living with chronic illness..when do u get time for u...just u..noone else..do u get any 'me' time?
Putting yourself first is not selfish!! It gives u time out to rest n recouperate..most times were running low on battery anyway..it seems like you're constantly trudging uphill!!
It's good to share these feelings..get it off your chest safely amongst friends who totally get it 🌈😽😽xx
Right there with you in your thoughts & feelings hug ml
Hi Greentomatoes, sorry you're struggling and down at the moment it's a horrible place to be in and the last thing you need is someone telling you to buck up.Feeling physically un well for long periods of time can and does drag you down, well it does me and everyone else for that matter. Have you spoken to your GP about it?
I find no matter how down and/or sad I get I can't cry but I have Sjogren's and can't produce tear's but that can have an up side as it means I can peel and chop a sack full of onion's and they don't affect me (I used to be a chef hence all the onion chopping). The aches in the joint's are a blasted pest especially when it goes on for days as for all the other stuff not much I can say really but at least last week I had a wonder-woman day and managed to cut the lawn suffered for it later but the grass looked good, trouble the flipping rain has made it grow again so it's looking more like a shaggy green monster again. Maybe I should think about fake grass but apparently you have to sweep it twice a year, that seems harder work than mowing and can you imagine what the neighbour's would think seeing me outside broom in hand sweeping the lawn. I'm sure they already think I'm nutty without confirming it.
Anyway if the eye's are behaving I think tomorrow I'll get so sewing done I have at least two top's to make myself and I have everything for them, just hopping the eye's behave and I find some motivation somewhere, I'm sure I have a small jar of it somewhere just need to remember where I put it.
Take care and sod the doctor's who act as if they don't care, can you imagine living in the same house as them I bet when they're unwell they're the biggest wimps going and expect a whole load of sympathy and people running around after them. AH Karma.
X
🤣thank you 💚
You're welcome and I love your name.X
That’s the chef in you!! 😘
Thinking of food even when I can't eat because the gastritis doesn't want to be left out. These symptoms are just like looking after a bunch of demanding children at time's. Bunch? Banana's yummy.X
Mowing the lawn..Sweeping the lawn..both sound exhausting Boudica!! 😹Same as hoovering..it's a thankless task!! Ta for the chuckles 😉🌈😽😽xx
Hi Krazykat26, yes they are exhausting there is one blessing though, only the family get to see me sweep the ceilings it's the best way I've found of getting rid of those blasted cobwebs, I can't stand them or the horrid little things that make them.How are you keeping though I hope those demanding pesky symptoms aren't giving you to many problems or the doctors for that matter. I'm still waiting for the results of that combined clinic I had to endure they said I'd know in two weeks at the time I though really? Guess I'm right again, they must be on a different time zone to the real world. So now I'm pondering the idea " do I phone them or not". Its been over 5 weeks so a big time zone difference or do I practice the impossible for me and be a patient patient. On the other hand NA hell would probably freeze over before I've learnt that particular trick.
X
Cobwebs? Damp sock on a long stick does the trick for me!! 😹Wouldn't do any harm to give the combined clinic a PROD would it?!?! 😹
Am thinking of doing the same myself u know..I wanna get on with my treatment plan but docs have gone AWOL!! Or maybe they've gone Back to the Future? Or they're stuck in the TARDIS? 🤷🌈😽😽Xx
I think the doctors have been kidnapped by Aliens especially the GPs and put on planet Callcentre maybe the aliens have the consultants as well and just beam down one or two when the Earthlings get restless. History has taught me that there is only one day of the week I can get hold of the secretary, thats if she's not on holiday must be a cushy job by the amount of holidays she has.I was going to do some sewing today but woke up in what seems to be getting the normal feeling poo head & face ache, eyelids dragging across the eyeballs and the strange goings on with the chest but it's not the asthma and the oxymeter is showing O2 levels up and down but not down enough for the medic's to shift their bums, they've told me it needs to be down to 86% and stay there mine is often 91% and although the resting pulse is 90s and upward and I'm breathing like I've had a really good work out in the gym it appears I have to put up and get on with it. Luck I have inhalers that I'm more than able to adjust to whats happening even though at times I have to take a tad over the max but it's pointless telling GPs as they then want to change the inhalers to ones that you can't adjust so when thing get a bit rough that means trying to get through to the surgery or worse 111 and they are useless. Also with this covid stuff can you imagine the panic some faceless wonder would get into when you tell them you're having problems breathing. They turn deaf and don't even hear that you are telling them the chest conditions you have been diagnosed with.
Guess I'm lucky that I have an aversion to A&E.
X
It is time you follow the airlines mantra of putting your oxygen mask on before helping others. It is time to address your long term anxiety disorder( which are shown to lead to autoimmune diseases and exacerbate their progression) and are indeed likely to be causing many of the symptoms you are blaming lupus on when you bloods are stable.
From what you have written it seems it is time to rely on professionals other than your rheumatologist to control what is not working in your life. There is treatment for the anxiety and that need to do,do, do impulse you describe yourself as having.
There are wonderful programs to help us control our weight that work very well and you have the power to fix many of the issues you mention in this post. However, it often takes the help of a professional who focuses on our mental health to help us get to better physical health.
You need to stop helping others and start to help your self. A trained mental health provider would be far more helpful than a rheumatologist in treating the disease and would most likely to be able to bring you out from the “ dark hole” you are in. Anxiety and depression are diseases as chronic and debilitating and often fatal as lupus. They are very hard to treat and never go away with out professional help with meds or therapy.
If therapy is not an option yoga is a wonderful self help activity for anxious people and might help with the weight as well. Walking thirty minutes per day is shown to help with depression and anxiety as well but honestly my best treatment and life improvement was not given to me by my rheumatologist nor hematologist nor cardiologist nor neurologist. My therapist I credit with saving my life and improving my health. We all need to start understanding how detrimental poor mental health is to our overall health.
Please reach out to a therapist if you do not yet utilize one.
Take care.
Thank you 💚
Greentomatoes, First, I can hear your struggle and the fact that you feel you should be able to overcome it. Your statement - I have so much to be grateful for but I am so far down a dark hole makes me think that because you have things to be grateful for, you feel you should be able to not have to reach out and feel low. You feel you are the doer and need to be strong for others over your own needs. If I am overstepping, I apologize, but I know that in myself, I always think that because others have it worse, I don't have the right to feeling sad, angry, etc. No matter what, I have to be there for others and if I can't, which is more and more and because of illness, I am less. In my case, this goes back to my childhood and not being allowed to have my own feelings. I think that having to hiding my feelings starting in childhood does damage the immune system. I am not trying to pry, but does any of this make sense to you? It took me years to figure some of this out and is still a struggle thinking I am allowed my feelings. I have no great wisdom, but I do know that you have a right to be validated for how you feel whether it be physical or emotional pain. The support in this group is wonderful and I am proud of you for reaching out. You are not alone and what you feel and think is important. Your sharing helps all of us, and hopefully, helps you. Keep sharing your feelings because you have every right. You have touched me and are in my heart.
Many hopeful and healing hugs.
Wonderful words of support, I felt emotional reading your words.😊😊😊
Dear Pumpkin2009,
I appreciate you answering xx
And yes this does resonate with me.
Anxiety since childhood, people pleaser, room reader and preventive of fights / arguments.
Much love xxxx
I understand. There are so many easy answers we are given, but what we learned in childhood is never that easy to be overcome. In my case, it is a daily struggle that most people think, if you know it, why can't you just change it. If it were that simple, of course, I would. This, of course, is an area that doctors are not versed in, not comfortable with, much easier to deal with black and white labs. It is all intertwined and part of the bigger picture. Many hugs.
Healing hugs.
oh Greentomatoes you forgot that smoothing things over and not rocking the boat it all adds up you know and the more you do the more they expect. If the kiddies are big enough start training them to tidy their stuff away and helping to keep their rooms tidy your their mother not their servant. Thats one big hard battle I know but it's amazing how a bit of motherly bribery works that or they have to fine their own stuff in a very untidy room. earphone's help to bloke out that constant whining at first you know the "MUM where's this and that" I used to reply "well you put it down so thats where it is" or" everything has a place if you'd put it there then thats where you would be able to find it". It works in the end and some how by all sort's of tricks I even managed to get them to do chore's, not sure how that happened though that will always be one of life's puzzles.X
Me too! I played the well adjusted middle child enabler role for my fist half of life perfectly. But after a stroke in my 40s and weeks in the ICU of being unable to play my self defined role of peace maker, maid, chef, chauffeur, tutor and pta volunteer I saw that life went on for my family just fine without my micromanaging and it gave me the realization that I was my worst enemy and my type a personality and my history of generalized anxiety and need for control were indeed killing me and really not helping the people I thought I was helping at all.
Therapy has worked for me. I am honestly happy for the first time ever. I no longer have those daily butterflies in my tummy that I had lived with daily for almost the first half century of my life . I am never exhausted any longer. My Ana is now negative as are all other antibody tests. I returned to my pre children body size and maintained that weight without trying for over two years now. My family is striving and my marriage is stronger now than it was before. I love my job now too!
I hope with all my heart you too can find solace.
So sorry you are having a hard time..i agree with the others that its time to address the anxiety and depression. They are well known factors in chronic illness and there is nothing to be ashamed of by asking for help.as for your family...it won't hurt them to do abit more to help you or themselves.my youngest has been a young carer for me for 7 years and I actually think it's taught him some valuable lessons ( my eldest lives away) .be confident in how you feel with regards to your Rheumatologist...question them,challenge them no progress move on.i understand the feeling of "stop the world I want to get off" you just need to slow it down so you can pace yourself better.. Big hug xx
Thank you 💚
Hey Greentomatoes. Everyone on this forum understands how emotional & exhausting pain can be. I developed arthritis when i was 21. Walked like an old woman. (50 now!!!) When i’m feeling low & emotional, i find singing REALLY helps me. I just get my karaoke on my tablet. I love to sing soul & jazz. I’ve sung in a club a few times. Had some compliments. Gave me such a buzz. I love to sing in my bathroom too. (Great echo!) I love to write too. I lost my lovely mum 4 yrs ago. Still grieving. I’ve started writing a tiny bit of poetry too. You can really let all your emotions out on a blank page. Good luck. You’re not alone with these feelings! X
💚
Interested to hear more of your struggle with arthritis. I have stills disease which manifests as R.A. I used sticks when I was 17 to walk, I’m 59 now. 🤭
Hi Stillsdisease. I thought 21 was young enough to develop this awful disease. But 17? How sad.
I have to say. I still feel emotional at the way i got it. I was still a virgin at 21. I was very shy! I met a man i really fell for. (Algerian). He was the first man i’d ever been intimate with. We had been together for about 1 year. Then we married. But after 6 months of marriage. I started to get seriously awful pain in my right big toe & my left shoulder. Then my right eye started to get symptoms of conjunctivitis. I was in agony. I couldn’t even stand putting a sheet over my toe. The pain was unbearable. My lovely mum was a nurse. (My dad died when i was 17). He’d had a heart attack in Epping Forest. So it was just my mum, me & my brother. My mum was a nurse & took me to her hospital A&E. She was obviously very worried. They kept me in for 5 days. Did a load of tests. I remember my Consultant sitting on my bed saying’We know what you’ve got young lady. You’ve got arthritis!!!’ My mum’s face dropped. I was just pleased there was a reason for all this pain. I was then told i had an STI. I couldn’t believe it. I had caught a sexual disease from my husband. (CHLYMIDIA). Because of my genes. (HLB27). I was prone to getting this seriously painful condition. I was so emotional. So was my mum. I had a very heated ‘discussion’ with him. He denied he had cheated. But said he’d been with someone before me. I later looked into it. It can stay in your system for months or even yrs. there aren’t many symptoms for men. But for women it can cause more damage to your reproductive organs. Make you infertile. But with me. It buggered up my joints. I went through pure agony. I was on steroids, Sulphasalazeine, Indocid. Co-CodamoI. I was on very high doses. One day my brother inlaw came into the room & i didn’t recognise him. I said ‘who are you?’ They thought i was joking. But i was on such a high dose, i was like a zombie. I couldn’t read, or write. Was very confused. My Consultant told me to lower the dose. I was only like that for one night. But i remember how scary it was. That all happened in 91/92. But even now. All these yrs later i still get attacks of Iritis. (Very serious eye condition. Plus i have Glaucoma. I’ve had loads of steroid injections in my eyes & cataracts removed. Plus steroid implants injected into the eyes. (Horrible). My vision was going. Very scary. Plus i had to have a very painful operation on my toes. They were very deformed. I had to have some toes fused. They call it pigeon toed. I had to wear massive protective shoes for about 4 months. (I always got a seat on the bus!!) I might have to have another operation on them. They’re quite deformed again.
But treatment’s really moved on. I have an Infliximab infusion every 6 weeks at University College Hospital. I’ve been having this treatment for about 15yrs.
I do feel more publicity should be brought to the causes of certain types of arthritis. They should warn people to be careful. To have ‘safe sex’. You don’t have to sleep around to get an STI.
I know this is a very personal subject for me. But i feel on forums like this. You can open up more.
I also took Indocid for years. Interestingly I had a severe bout of cystitis ten months before I became ill. It was untreated as I didn’t go to my GP for months as I thought it was VD ( that’s what we called STIs in the 70’s). The menopause appears to have aggravated my RA but it could just be age. I take HRT at the moment. Sounds like you’ve had a tough time but things do get better 😉
Hi Stillsdisease. Sorry your RA’s giving you crap. I have a valid excuse to be lazy when i have pain. I love soup. I get into bed. Lovely big bowl of soup & bread, get my tablet on & watch something funny. Comedy really is a great medicine. I love things like The Royle Family, Victoria Wood, Extras, The Vicar of Dibley. Utube’s fantastic. Plus i love salted caramel cornettos. The ones from Sainsbury’s are the best. Eating one of those in bed, with the fan going & watching something funny, really takes my mind off things! Naughty but nice!!
Count me in 🤣
Hi I’m sorry to hear you’re struggling.
I have APS and Lupus SLE and I understand how debilitating and frustrating and confusing it can be. I even doubt my own symptoms sometimes, is it Lupus, is hormones, will it pass or is it more serious, am I lazy, am I doing too much!?
But I am also a psychotherapist so I know there are some things I can do for myself and as you stated you feel low and anxious and stressed I wanted to suggest you do some reading about the vagus nerve.. basically this is what controls our fight and flight, disconnection switch off and also our calm and relaxed states and we have to do some work to get it in the right state.
Start by trying this:
You can learn to use breathing exercises to shift your focus away from pain. The human mind
processes one thing at a time. If you focus on the rhythm of your breathing, you're not focused on
the pain. The moment we anticipate pain, most of us tend to stop breathing and hold our breath.
Breath holding activates the fight/flight/freeze response, it tends to increase the sensation of pain,
stiffness, anxiety, or fear.
You can proceed as follows: take a deep inhalation into your belly (i.e. expanding your diaphragm) to
the count of five, pause, and then exhale slowly through a small hole in your mouth. While at rest
most people take about 10 to 14 breaths per minute. To get into parasympathetic/ relaxation/
healing mode it is ideal to reduce your breath to 5 to 7 times per minute. Exhaling through your
mouth instead of nose makes your breathing more of a conscious process, and helps you to observe
your breath more easily.
As you reduce your breaths per minute and get into parasympathetic mode, your muscles will relax,
dropping your worries and anxieties. The oxygen supply to your body's cells increases and this helps
produce endorphins, the body's feel-good hormones. Tibetan monks have been practicing 'conscious
breathing' for decades, but there is nothing mysterious about it. You can enhance your experience
by imagining that you inhale IN love, and exhale OUT gratitude. These ancient techniques also will
improve memory, fight depression, lower blood pressure, or heart rate, and boost your immune
systems — and it's free!
And there are other things you can do to shift the ‘state’ you’re in like Vixen said singing, writing, drawing, movement just when you’re making a drink stretch your arms or something, cold water showers or just cold water on the face, the body needs to calmed into the right state in a mindful way or it will revert back to the state it is used to which in your case in anxious fight/flight and more recently disconnection. All these states have a real purpose but inconvenient when the trigger and we don’t need them if that makes sense.
I didn’t know the fight/flight system activates pain. It makes so much sense, though. We used guided imagery to district children from the pain of medical procedures. We always got them to imagine themselves “floppy bunnies” or some other image to get them as calm as possible first.
Great advice!
K. 🧘♀️
I’ve pinched your breathing tip thank you 🤫
Hi Greentomatoes, I see I'm late to the party as usual lol. I have had lupus and various secondaries for 10 years now. I felt very bitter at the start, but have mellowed over the years. Couldn't carry on doing the things I wanted to do, takes me all day to climb a mountain. Can't even pot a plant without getting dead finger. Then lockdown came, lordy, lordy. Walking round the garden umpteen times a day cos of shielding. I thought about the poor people who didn't have gardens or those living in high rise flats.So the day would be solitaire on the PC, walk around the garden, makes cakes, scrawl down the facebook pages. For me well it's a toss up between the Lake District, because family lived near there, and the Yorkshire Dales and moors. So there I am liking all the Lake district pages and up pops a suggestion. Suggested for you. Hmm, now if the photo had a dog on it other than a spaniel I'd have passed it by, but I took the plunge.
A guy and 3 spaniels walking in the Lake District in lockdown. I thought what a lucky person to be able to get out in the fresh air every day, while I'm stuck here walking around the garden. As the days went on it came to light that the guy had suffered mental health issues after a car accident. He didn't realise that he had depression at the time, even felt suicidal. Then one day he was sent out by his wife to get a pint of milk and step by step, day by day, he began the long journey. And then he met a dog behind a gate, a spaniel, now known across the world as Max the Miracle dog.
So I have been following Max out in the Lake district for a year now, following the antics of 3 dogs, honestly they have you in stitches some days. There is a support group alongside which supports people, people with anxiety and mental health issues, Fans of Team Irving, but you have to follow Max to be invited to FOTI. We are a lovely bunch, give us a go, we're good listeners. have a lovely day x
So sorry to hear you are struggling GT but you’ve done the right thing sharing your feelings with us as many of us have gone through exactly the same. I’ve also suffered anxiety and depression since my early teens and have always found talking it out with a close friend or later a counsellor the best thing for me. It is like a load has been lifted. That was before I joined this wonderful forum. Here you will get the support and comfort you need from those who truly understand and it is a safe place to vent your feelings and experiences. But if that alone doesn’t lift you out of that dark hole do speak to your GP and perhaps a drug like Citalopram which I’ve been on for over 2 years now, will help you. I find since being on it I don’t get upset as easily and often remain calm when hubby is panicking about something that has happened which was always the other way round before. So don’t hesitate to discuss it with your GP who will probably offer both a drug and counselling although there is often a long waiting list for the latter. In the meantime keep telling us here how you feel and we are here for you 24/7. Calming hugs 🤗🤗😘xx Spotty.
Hi Greentomatoes. One thing is for certain, you can never be alone on this site and it’s good to talk with others. I hope that Sunday is a better day? Best wishes. Sincerely Kevin
Hi Greentomatoes, sorry that you are struggling, you are not alone there is so much love among everyone here as we understand that awful feeling of being so low, I hope you can get your rheumatologist to listen he/she cannot dismiss you when you say you are in pain, make sure you have the last word, sending lots of love your way ❤🌈
Any chance you can get a new rheumatologist. Rheumatologist not listening is not good. Also do you have someone to provide mental health therapy that uses cognitive behavioral therapy? Thats the one that helped me.
Greentomatoes, You have gotten a lot of support and advice. I do not want to lessen anyone's help, but I also want to say that sometimes, that can be overwhelming and even feel judgmental. I know I do not know you personally, but I do know myself. Sometimes, even the very best advice can cause me to feel overwhelmed and pressured. Then that adds to me questioning myself and feeling guilty that it seems I am not trying hard enough. If the anxiety and depression were just about a disease and symptoms, that is different. If it stems from how you have learned to cope throughout your life and then is combined by illness, it is very complicated. If I am over stepping here, please feel free to let me know. I think counseling is valuable if you find the right person. It has to be a connection where you do not feel judged, but validated. It also helps if the person understands about childhood triggers and chronic illness. A therapist in my opinion who just tells you want to do like it is so easy can cause more stress and damage.
I can tell that you are a good person and you are doing the very best you can. That is what is the most important right now. None of this is your fault and reaching out is a big step for you and you deserve so much credit for being able to do this. Cyber hugs coming your way.
Healing hugs.
Bless you. You are not alone in this. It is demoralising, frustrating, and depressing to be sick all the time. Please don’t bottle things up. You are amongst people here who truly understand how you feel and offer support and hope. Personally without this forum I do not know how I would cope either. I am currently getting counselling and the huge relief at telling someone just how bad I felt and how much I just wanted it all to stop has helped me tremendously. There is help out there so tell your GP and ask for support. I send you huge virtual Cwtches and the hope of a better tomorrow xxx
Hi Greentoms. Is there anyway of 'back peddling' with things - work and family, at least for a few days?
Can you share with any of these folk what it is like for you at the moment and how it is impacting? It is in their own interests that they help.
I recently had to share with family, I was more open than I thought I could be - it worked better than I thought. I used 'Lupus the invisible monster'
lupusuk.org.uk/family-and-f...
Maybe there are other things like this I'm not aware of.
Take care. Look after yourself - maybe list some nice treats, on a scrap of paper, and ask different folk for each of them 🤗
Hi Green tomatoes,
Completely understand how you're feeling. I posted just a couple of days ago to have a bit of a rant. Feeling really fed up with it all! Waiting for rheaumy team to call me back because ill run out of all my medication from next week but I've rang twice and left a message. Not much more I can do 🙁.
So sorry you're feeling so fed up, the feeling of just being exhausted of doing everything and all at once. And as you say you're a 'doer'. I find myself in the same position but I'm learning to take a step back and certainly take time for myself but I understand that can be difficult and sometimes you just need to let it out for sure!
I hope you're feeling better and do manage to speak to another rheumatologist or GP as others have suggested don't give up. You know your body best.
Sending you lots of healing power and hope you're feeling better! Xxx
So sorry to hear you’re struggling I too totally empathise with you .we need to make sure we have the support we need x
With you. Today can't stop crying when usually not a crying sort. Sick & tired of being sick & tired I feel. Keep telling myself " This too shall pass" . Thank you for sharing your feelings it helps to know you're not alone
Hi Greentomatoes,
I am very sorry that you r having such a tough time right now, i feel for you.
Before you start blaming yourself, please know that doctors and consultants r not always right.
Just because your blood results come back ok, doesn't mean u r not in a flare. Many lupus sufferers have ok blood results when they r in a flare, me included. Unfortunately i was not aware of this to my detriment. My consultant kept telling me my lupus was ok because my bloods were ok. I kept telling him i didn't feel like my lupus was ok, i was having issues with my lungs but he did not listen. I ended up in full blown flare and lung damage because while he was telling me my bloods were ok, my immune system was attacking my lungs. He was the head rheumatologist in rheumatology department!!! So the top consultation.
I know u said u suffer from anxiety, however if your lupus is active then it may be exacerbating your symptoms. When i am in a flare i become very anxious and even agoraphobic, until my lupus is under control again, then things calm down.
Please don't blame yourself. Do get another opinion.
If u must and have the strength to do so write a letter of complaint or get someone to write it for u if u cannot face if, i know how hard it is to do this when u r feeling very down.
I wrote a letter of complaint and asked to be referred to another consultant, they may be less dismissive of u after a letter of complaint.
I hope u start feeling better soon.
X
Thank you so much 💚
Greentomatoes, I have been wondering how you are doing. You are in my thoughts.
Healing hugs.
Hi Pumpkin2009, I have been ok, felt bit more positive. Bad day today for pain and swelling but your healing hugs have helped xx
Struggling Lupie Looking for Friends
Struggling to manage work with Lupus
Struggling with temperature control 
Struggling after surgery
Struggling with the \"fog\"
