Very desperate!!!!!: Hello everyone I’m Josh just... - LUPUS UK

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Very desperate!!!!!


Hello everyone I’m Josh just got diagnosed with lupus I’m suffering from chronic hip lower back mid spine pain, massive fatigue, double vision, headaches, and the worst part massive insomnia.....To make matters worse I have stage 3 fibrosis of the that complicates things dramatically I doubt I’ll be able to use the powerful drugs use to treat lupus with such a compromised liver I feel like I’m doomed with a death sentence in the near future

55 Replies

Bigguy! Hello. I totally understand your concern and worry. But, there is always more than one solution to a problem. Please don’t fret! You are smart in understanding that a lot of meds (all meds?) are hard on a compromised liver. My liver shows cirrhosis (and I don’t drink) so I too am trying to be super careful with what I do and don’t use. Ask your doctor about alternatives. Supplements, change in what you do and don’t eat. Exercise. Etc. It won’t change things over night but it will change things. And in the long run, with your bad liver, it will be better for you. You will be better off. All my best to you, and remember, you can do this! Don’t give up or give in!

Thank you for kind words

Anytime. We are here for each other. No one understands what we feel or what we are going through, except, us(?) So we are all we have. God loves us! 🙏

Indeed he does!

Hi Josh, I don’t have the answers for you but I just wanted to say that everyone who has a Lupus diagnosis feels despair initially. There is such a lot to take in and deal with and when you are flaring badly everything seems so hard to deal with. When your doctors have helped to get the pain and inflammation under control then you can discuss your options for treatment. You are not alone and people here will help and support you too. Hang on in there

Thanks for your kind words and advise I’ll take all I can get at this point.......can’t barely make it thru each day like a nite mare over and over every day , the 1-3 hours of sleep a night makes everything 10x’s

Bless you. I remember thinking I was going crazy or going to die, my pain started in my feet I could not weight bare and literally screamed with pain. It then moved to my pelvis and I could not sit or lie down. I actually fell asleep hanging over the back of a chair with my bum in the air. My rashes stung and itched. My balance was poor, my vision blurred, my fingers and toes tingling. Then the pain moved to my chest and I thought I was having a heart attack. It is a distressing, debilitating time for you. Once you are in less pain you are more likely to relax and manage to sleep. I slept for about 10-12 hours once I was given pain relief. I hope your doctors sort that out quickly for you. If they are not then ask for an urgent referral to a pain clinic. You should not be left in this state I am so very sorry.

Thanks so much for your response and kind words it means a lot, I have a full bottle of Xanax and some nites I’m tempted to dump the whole bottle and take a dirt nap for good but I have a 18 year old beautiful daughter and she needs me badly

Oh Josh please don’t do that. I understand completely the pain and frustration. I got to that stage a few years ago where I thought I was a burden to my husband and was existing rather than living. I popped ten 15 mg mst and just went to bed. I woke up 18 hours later with dreadful stomach pain. My lovely husband was so relieved that I was finally sleeping he had just let me sleep. I was so very fortunate that I woke up and had no liver damage. If you feel this way please get some counselling. I did and it made me realise that even on my worse days I have something to offer. Your daughter will always need you and I am absolutely certain that she will want you to feel better and be out of pain. Is there a Lupus group near you that you can actually get some support from ?

I’ll check around, right now I just want to try and slow down the progression and get some relief and SLEEP!!!!!! My friend to me a horror story of a lady his wife works with got diagnosed with lupus 3 years ago and just died of a Pneumonia ......that’s to quick!!!! Scares the crap out of me, in the matter of less than 1 year I’ve went from a hard working unstoppable 49 year old to almost a person unable to do simple tasks with crippling back , hip, spine pain, headaches, insomnia, double vision, and bleeding gums .......

Oh no!! Please, no dirt nap! Bigguy, I’m glad you love your daughter enough to stick around. Also to be a good example to her. Believe me, a new day may be dawning for you just around the corner. Don’t give up, and when you feel like it, please, talk to us, call a friend, do what cheers you, see a funny film... but don’t give up. Life is worth it even if our live’s are a bit diminished by what we are going through. You will adjust. Like I said before, ‘you’ve got this!’ And we’ve got your back! You are loved.

You are the best thanks for your words of wisdom and kindness

Absolutely. We really do care about you.

Hi Bigguy.

I tried to send a really long post to you, but I seem to have deleted it by mistake, aaaarh! I'm running out of energy now, so here's an abridged version:

I have Non Alcoholic Fatty Liver Disease, fibrosis score 4. My liver specialist says this is probably caused by a rare metabolic disorder, potentially one of the glycogen storage diseases. In my case the disease is unlikely to progress to cirrhosis and will improve slowly if I continue with my already very clean diet and my medication (a combo of statins and ezetimibe) continues to reduce my extremely high cholesterol.

Yes, my Drs are mindful of my liver when they prescribe, but it's not an impossible task and I hope this is also the case for you.

I hope this is helpful, but please let me know if I can give more info.

in reply to MEGS53

Thanks so much for your insight it means the world to me, its nice to hear from people that are educated and know more than my damn doctor for goodness sakes

in reply to Bigguy_1969

Ah, bless you. It is very scary - been there many times, got several T-shirts! I seem to have quite a few 'rare' disorders that are slowly being recognized, at last. It's the rare ones that take the longest to dx and cause the most frustration and bewilderment.

And don't let the Drs tell you your poorly liver is all down to lifestyle choices - I've also got that t-shirt!

I'm not medically trained (tho' I was a bio-medical research scientist), but I'm very happy to help in any way I can. Just ask.....

in reply to MEGS53

Made me laugh .....haven’t do much of that lately .....I got scans coming up but I’m pretty sure I have it In my brain and spine Is there any stopping this type of lupus, I really don’t have any skin issues just the joint pain in my hips,lower and mid back, numbness in my left hand and double vision with headaches with dry eyes and severe insomnia

Nor me, lol!

I don't have skin issues either, but I do have most of the other stuff you describe + others. I'm waiting for review by my Rheumy in a few weeks.

Have they suggested a cause for your liver problems? Hope you don't mind me asking.

in reply to MEGS53

Yes I have a fatty liver non alcoholic, fibroscan stage f2-f3 and fatty score 380 out of 400 I hope with A strict diet and exercise I can change that I’m praying it’s not the lupus that’s now creating inflammation of the I forgot bleeding gums Wouldn’t want to leave that one out LOL

in reply to Bigguy_1969

I also hope that AI is not the cause of my liver problems. They seem to be fairly certain I have a glycogen storage problem - it would explain a lot - but I've been here before!

I haven't got bleeding gums, but I'm recovering from a very nasty infection of my jaw bone, which pretended to be a tooth abscess. This is the second (maybe third) time I've had it. It fooled my GP, but not my brilliant dentist.

They call it the 'great imitator' for good reason.

in reply to MEGS53

Indeed it’s a bitchhhh

in reply to Bigguy_1969

Sure is! Take care Bigguy, you seem like a lovely bloke, so hang on in there - things will get better.

in reply to MEGS53

Thanks sure hope so I’m hurting for certain

in reply to Bigguy_1969

They will get better - honest - but it might take a while. Hang on in......

Try magnesium supplements for the insomnia, and just get the go to check your vitamin d levels, as that can cause a lot of joint pain too.

Thanks for the advise , Gone to my local health store now!!!

G’morning BG! How are you feeling today?

Like.............. crap lol everyday is a nightmare

Oh BG, do you have loved ones around? I can tell you have a sense of humor, though struggling. I hope you have others close that can help bouy you. I’m so sorry to hear this. I will worry about you and pray for you. Better days ahead? Please keep us posted. I hope you aren’t alone. 🙏

My wife and daughter are here with me I got a few friends too but it’s tough dealing with this every morning when I wake up at 2am Can’t get a good nights sleep and feel like crap with pain every day I just hope When I finally get to see a Rheumatologist they can slow this progression down some

They will, they certainly will. Be careful though, because meds filter through your liver. If your’s is already compromised, you may want to talk to your doctor about alternative therapy. Using foods and supplements to heal all of you. But talk to your doctor, I’m no expert. But maybe, let them know you’d be interested in that route and see what they say. It seems to me, meds heal quicker, but then your body relies on them and sometimes you need more and more. And there are side effects. Foods and supplements may take longer but the effects will last longer.

I am so glad to know you have people that love you, around you. My heart was breaking worrying that you were suffering alone.

Thank you sweetie sometimes I wish I was alone that I didn’t have to put them all through it because my daughter and wife are suffering dearly seeing me suffer every day

Thanks for your help and words

BG, I totally get that. I’ve had some major times of regret feeling I was bringing my family or my husband down. But that’s where unconditional love comes in, right? For better it for worse? You’d stay for them? Well, they love you enough to see you through as well. Please be kind to yourself. You’ll find your answers and be better, and look back and know it was all worth it.

Yes indeed I’d be there for them too, and I’d rather it be me than them, only thing I’m worried about if I leave them who’s there to protect them I live in a very crime riddled Tampa Florida, we plan on selling everything thing we have and moved to Tennessee a lot slower paced and less craziness up there, Bible Belt up there most people are respectful and Christian plus she has a sister brother in law and two young stong nephews to help her and my daughter out

Very good idea Bigguy (the move). Please get a lot of help with the move. Stress, whether good stress or bad stress, seems to put most of us in flair crazyland! All that beautiful sunshine and constant change in barometric pressure really affects a lot of us, so a move away from Florida might be good for many reasons. Keep us updated with that please. 🙏

Yes sunny hot Florida is not a great place for a person with lupus that’s for sure , we are looking for a house in a thick wooded lot in Tennessee lol I will do, is there anything you can take over the counter for Inflammation till I see a Rheumatologist

I use lots of supplements and do’s and don’ts with food.

By Supplements you mean vitamins?

More a combination of vitamins, minerals, etc. some of the supplements I’ve never heard of before now, and some are things I have.

Can you list your vitamins and minerals and I’ll check them out and see if dr. Is down with it

Oh my gosh! Bigguy, tomorrow I am starting Phase 3 of a 5 phase (and 6 month) protocol. The phase I start tomorrow has 16 different supplements taken multiply several times a day.

I would be frank with your doctor if you want to go holistic and ask them what you can try outside of meds, or if you prefer, with meds. Idk how whole in you want to be. My thing is, the side effects of meds scare me. I worry about causing myself more damage, but I do realize there is a time and place where they are needed. I have no medical training (except first aid) and would hate to steer you wrong. Just like prescriptions, there’s no ‘one size fits all’. But, you might want to ask the doctor’s for their advice, google and research and pray. Turmeric is probably helpful and not harmful. I would also start several rounds of a good ‘soil based’ probiotic. So much research is showing that healing our gut health is a good place to start because so much in our foods pass through a leaky gut and cause molecular mimicry.

Ask your doctor about B-12, liquid D, Cats Claw, Ginger Root, co-Q10 along with the Mag Lactate and, oh my goodness, there really is so much I’m using but Idk what your body needs and how much comparatively to gender and size. But these are some I started off with.

I wish I was knowledgeable in this. I really do want to help you, but I don’t want to give you bad advice and cause you more harm.

Maybe asking your doctor these things plus food, what to avoid and what to eat, will help him see the direction you’d like to take things? 🙏I really do wish you well. I know you will get through this. Be patient with yourself.

I totally understand but I want to hear what works for you and what your using and run it by the doctors and make sure it’s a good fit 4 me too

Also, magnesium lactate, which is one of my many supplements used, I believe is also a good sleep aid? I think I read that somewhere (I could be wrong, it could be one of the others I take).

Had God help me today got the best two Rheumatologists in Tampa and called them both , both office managers gave me appointments in the beginning and mid June my heart sunk and I cried and they both stayed tuff and said that’s the earliest appointment they could give,I called back a few hours later after praying my butt off and got a sweet southern bell she listened to my 15 min of pleading and got me a appointment this Thursday!!!! I about passed out with joy, praise the Lord!!!!!!

See BB, God is there for you! Believe. He loves all of us. We are all His children and He wants the best for us. This life has lessons we must learn. Each of us have our own. He won’t force Himself on us, but if we ask, we will receive as long as we ask within His will (in otherwords, He sees the big picture and will not gray us prayers that will be for our harm).

Good for you! I am so very happy. Keep leaning on Him!!


You’ve got this!

Your are the best!

Big guy, I try to avoid pharma whenever I can so after a stroke last year, due to APS and history of lupus. I asked my hemotologist if I could have six months to see if I could get my very high antibodies down without starting HCQ. My immunologist at the time was very big in gut bacteria as a cause of autoimmune disease and was happy to give me a few months of holistic changes as long as I promised to stay on warfarin, plavix and Lipitor.

I started treating my life long anxiety with therapy for everything I read saw a link between PTSD as a precursor to lupus. Part of this therapy included daily walking. After my stroke I could only walk to my mailbox and back. I doubled each walk's length weekly and now, a year later, walk miles everyday. I have ACT ( for post stroke centralized pain), EMDR AND MBCT for PTSD and GAD as therapies.

Due to anxiety, I suffered insomnia my whole life. Now I practice sleep hygiene daily. This means no screens an hour before bed time. No food after 7 pm. I retire at the same time every night and raise 8 hrs later at the same time every morning. And I use a lavender diffuser and a sleep hypnosis cd while I fall asleep. I generally sleep perfectly now. Also do a sleep study to rule out apnea. Very important!

Diet wise I added 24 grams of fiber and resistant starch to my diet daily to improve my gut flora. I also do not eat before 9am or after 7 pm to help keep down my calorie count.

After six months of this my Apls went from extremely high, to low and then now to non detectable. My lupus panel is also now negative. Could be coincidental but I have been told I no longer need HCQ or plavix. Just low dose aspirin and warfarin for now.

Good luck with everything.

Hi Roarah, I too had horrible insomnia. My fault, I had let my life get so busy about 12 years ago that I let sleep go, as if I didn’t have time for it and it wasn’t important (very stupid decision). Anyway, I agree that you can retrain yourself and reset your circadian (is that the spelling?) sleep cycle. It takes some work, as you have stated, but will happen and will be worth it.

May I add to watch your liquid intake right before bed and empty your bladder as much as possible. I have a dry mouth and dehydration problem, but if I drink too much before bed (water) my full bladder starts waking me during the night and nagging at me. If I don’t drink enough, then I wake up thirsty during the night, though just a sip from a glass of water on the nightstand and I am out again immediately. Much better than walking to the restroom.

in reply to Roarah

Amazing stuff there!!!!! THANK YOU!!!!!!!!

Just wanted to send love and hugs. I’m in a similar position re insomnia.X

in reply to TM1970

It’s tuff that’s for sure I can handle the pain every minute of every day but 1-3hours of sleep is unbearable

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