Mild Lupus! Angry Face

[CavendishCool]

If anyone else tells me, me included, I'm fortunate to have the above (I'm not even letting the words pass my lips) then I fear I cannot be responsible for my reply. Today, I have occipital neuralgia. My scalp particular behind my left ear feels like thousands of needles piercing the skin. Of course I'm self diagnosed and of course it's literally in my head because I have "mild" L. Thank you for reading 🙏

[Spanielmadlady]

Sending you hugs of comfort Cavendish 🫂😚 🩷 xx

[CavendishCool in reply to Spanielmadlady]

Thank you, but I'm sure you need it more than me after all your shenanigans, so sending lots back to you. How're you both doing now?

[Spanielmadlady in reply to CavendishCool]

Thanks Cavendish. Very mixed...Hugo has had the staples out of his leg and ive had the stitches out of my face. Gp has diagnosed ptsd and the police investigation is very slow .xx

[CavendishCool in reply to Spanielmadlady]

I'm not surprised, probably both of you have ptsd. Poor Hugo, I hope he can get some help to deal with his trauma too. My little dog was always quite wary when he went out after his attack, but maybe this is where Hugo's Springer character might will out and he'll be able to move forward from such a horrible time. I really feel for both of you. It is very frightening when other people don't have control of their dogs. I know what you mean about a slow investigation by the police. I was a significant witness to an accident 3 weeks ago where an elderly lady was knocked over the bonnet of a car and landed in the road. That was 3 weeks tomorrow and I don't know how she is and I've heard nothing from the police so maybe it was all captured on CCTV. Thanks for your kindness in replying. I do wish I could make everything tickety boo for you and Hugo. Wishing you both much love and many hugs. ❤️

[Spanielmadlady in reply to CavendishCool]

Hugo is fairing better than I am. He's fine with his pawpals just a bit wary of reactive dogs. 2 dogs last night on the green has a snarl and snap spat which upset us both .The police still haven't interviewed the owner yet but inform me it is arranged x

[CavendishCool in reply to Spanielmadlady]

Good old Hugo, but it sorta takes the pleasure out of going out and about I used to find. Boy, I would really like to be a fly on the wall with that interview. I hope they get a strong telling off at the least. I will keep everything crossed for you even though you deserve so much more in the case of the resolution of this horrific attack. Much love ❤️ xx

[Krazykat26]

Aww bless ya 🤗Gentle virtual hug CC I went into the garden to trim my bush this morning before it got too sunny..now I've got intercostal muscle pain!L only affects my skin tho..apparently 🤔😹

I got given this by a friend..it made me smile and funnily enough I thought of you . It sits at the feet of my laughing Buddha n it helps me through my 'tough times '.

Rest up lady n I hope it passes soon. 🙏Xx

Knitted pineapple

[CavendishCool in reply to Krazykat26]

LOVE IT! Have you looked up the alternative meaning of FINE on Google? If you don't already know it, it might make you laugh 😆 I'm playing okey cokey garden too. I need to practise what I preach - I am a yoga teacher for goodness sake. I know the rules! Thanks for the smile. 🙏❤️

[Krazykat26 in reply to CavendishCool]

It was you that first made me aware of it..so yes I do know the acronym 😉You have all the necessary tools to deal with this 'current issue'. I wish you well again soon as 🙏💜

[CavendishCool in reply to Krazykat26]

Oops. I'm such a Richard Cranium 😆

[GLRocc]

I was told I have "mild" Lupus too. Apparently, in medical terms that means no organ involvement . It sounds like you are having a tough time, and I understand why you feel angry and frustrated. I hope things improve. Take care

[KeepingUpBeat]

Oh I so identify with your post. I have so many symptoms not associated with SLE by hospital consultants but literature says otherwise as do fellow lupies. Widespread joint pain is deemed wear and tear osteoarthritis, gastro issues still undetermined, tinnitus, etc. Antinuclear antibody positive and has anti-Ro antibody and is mainly affected by arthralgia affecting the small and large joints and a profound sense of fatigue consultant says is 'A lupus like disease' and not SLE. Hydroxychloroquine is the suggested treatment but this medication is hard for my body to tolerate and when taking it I have to manage continuous nausea which is not pleasant.

[GLRocc in reply to KeepingUpBeat]

If it's any help, the usual process seems to be straight in with 400mg per day, but I have IBS and acid reflux so doctor suggested 200g Hydroxychloroquine once a day for 2 or 3 month and then increase to 2 tablets per day. You can increase slowly e.g. 2 tablets every other day for a month before going to two tablets every day. I found taking them with food (a lot of it) helped and a probiotic such as optibac everyday. Your body will get used to it, it just takes time. I've been on it for two and a half years and apart from the first few months have had no side effects

[KeepingUpBeat in reply to GLRocc]

Thanks for the suggestion. I went down to 200mg from 400mg a day but it did not help to reduce or stop the nausea unfortunately.

[Stills]

completely get this, it’s so frustrating. All my results are borderline so no treatment. Put them all together and I’m unwell! Apparently that’s not how it works. GPs should learn about optimisation of our conditions.

If a car has a puncture you repair it. If a car has four wheels low in tread do you just leave it until one punctures…….

[Dro47]

Hi all, I totally sympathise.. I was diagnosed with supposedly mild lupus 8 weeks ago ( after a 7 year battle). I have started hydroxychloroquine but feel so much worse at the moment. I'm covered in heat patches due to intercostal pain, have no appetite because I feel full, have occipital neuralgia, trigeminal neuralgia , tinnitus, chillblains - the list could go on. Saw gp yesterday ( due to the rib pain I have on left side which spreads up to neck and arm, shoulder blade ) and was told - you've had this before, we've checked bloods , it's probably the lupus, keep going!! It makes me feel so stupid as i worry that its my spleen but am guessing it must just be intercostal pain after reading your posts. I used to love the sun/heat and that's when I'd feel so much better in myself but now I'm scared to go outside. I hate this illness! X

[CavendishCool in reply to Dro47]

Ah my lovely peep so sorry you're having all this. I was reasonably lucky that I was diagnosed quite quickly, have one understanding GP who is quite open in saying he has absolutely no idea about the, let's be polite or I will get censored, complexities of Lupus. I just can't get to see him because there are other people "sicker" at the time I would like a chat - yeah that's going to happen any way. Does anyone "chat" any more? I'm lucky, there's the word again, that I'm on Hydroxychloroquine and Amitriptylin which I think enable me to function, but I have never had a break from them. I just feel that if this is mild and I feel so rubbish, then... but no point in that I guess, but I am so tired and fed up that I never know whether it will be a reasonable day or an unreasonable day. However, this forum helps me so much because no one ever says or makes you feel that your experience of Lupus is less/more/different which helps me to accept this situation better than not being on here. My Rheumatologist said to me at last year's visit "mild does not mean easy and when you're not feeling great, you must do what you feel is right at that time for you" My husband came to that appointment and also told him (my husband) that "no one can judge another person who does or does not experience this "Chronic" illness because it is different for everyone and every sufferers illness is unique to them, that's why it is so hard to diagnose and treat" He helped me understand that I can't "push" through the fatigue etc. My biggest help is breathing exercises and restorative yoga, but then I know about this because I am a yoga teacher. Keep on the forum, it helps me so much. I hope you get some relief soon. Namaste 🙏 xx

[Dro47 in reply to CavendishCool]

Thank you, I'm so relieved this forum is here. The last 7 years have been tough with not being believed! I kept saying I thought my body was attacking itself but got laughed at and told it was anxiety. Then I started to react to every medication and vitamin going. I then said I thought I had endometriosis and thyroud problems but was told thyroud levels were normal ( despite off the scale antibodies) and was told by a gynaecologist the pain I had was hip joint. They then did laparoscopy and I had stage 4 endometriosis and within 2 months ( last july)had to have 7 hour surgery for full hysterectomy, endometriosis removed from pretty much everywhere and bowel shaving as one ovary had stuck to bowel. Following surgery I declined and had thyrouditis, then discovered I had pernicios anaemia then in Feb diagnosed with lupus. I cannot take hrt as react to it so also have menopausal symptoms. It's very hard knowing what's causing what symptoms. I cannot regulate my temperature, am either pale and freezing or bright red and swollen, have lost 2 stone 3lbs( am now just 8 stone) and have neuropathy everywhere. I went back to work this week after 8 1/2months off and am struggling with it! Anyway enough of my moans! I'm keen to know does yoga help with your symptoms, I'm really keen to try but don't want to make myself worse. Thank you x

[CavendishCool in reply to Dro47]

Apologies for not replying sooner, but I had to finally give up yesterday and couldn't even pick up my phone. Anyhoo, try looking at Restorative yoga first. It gets a lot of backlash because it appears you are doing nothing, but you are really tuning in with yourself via allowing the body to relinquish whatever it has been building up. The key is the breathing and allowing yourself at least six minutes per position to really allow the body to let go. You'll find you might cry if you've never done it before as there are so many spaces where your body holds trauma such as the diaphragm, gut and chest. You don't need any special equipment and you can do it on your bed. This yoga helped me especially after my spinal surgery in 2018 and I still go to it at least once per week. You could also try Yoga Nidra if you are feeling very unwell. Try Googling Yoga Matters company for information about both. You Tube is also good as are the free classes from Yogaia especially a guy called Craig. Yoga has been my saviour over the past 13 years since the sudden death of my Mum and two deaths of my best friends. Also I follow as near as I can an Aryuvedic life style which when I'm really good with it, helps hugely. I am very fortunate that a friend of mine is a trained Aryuvedic practitioner and I touch base with her at the change of seasons and often and whenever I need some extra advice. I cannot imagine how life feels for you, but I hope you can begin to take one little step at a time. Stay in touch on the forum. Namaste 🙏 xx

[Hippychick11]

I really feel for you as I am going through the same thing. I have had to change GPs as they just said that Im just a little low on iron even though a consultant has stated that it could be Lupus or Rheumatoid Arthritis. Not acknowledging the fact that I have severe pain in toes and fingers which means I cannot play the piano and I am a pianist! Very frustrating but I am not giving up and neither should you. x

[Dro47 in reply to Hippychick11]

Keep going! It's taken me 7 years of not being believed to then finding out I have lupus, pernicious anaemia, hashimotos thyroiditis and osteoporosis( im 46 years old!). I am so fed up with all of it especially as treatment doesn't seem to be doing anything but I keep being told it's all mild. I'm awaiting gastro now as they have finally agreed that I may have stomach issues too( I've been asking for 5 years!). Keep persisting and use forums like this to stay positive that your not alone xx

[CavendishCool in reply to Hippychick11]

Yeh Lupus can be cruel, but by having a good old moan (for me) on here helps to realise just how it feels for other sufferers which in the end gives me perspective which then brings me back to myself. It also helps when people post their dogs, (other animals are requested). They cheer me right up. So sorry you can't play your piano, I can't imagine how frustrating that is for you. Namaste 🙏 xx

[Hippychick11 in reply to CavendishCool]

I think this community is fantastic and it has helped me loads! There is nothing wrong with having a good moan I hope you are having a better weekend xx