I am wandering around my house at a snails pace today. Don't know what to do and would love some advice if anyone has time. Am in so much pain that I don't know what to do with myself.
Sjorgrens/SLE overlap, adrenal autoantibodies, Hashimoto's, blood tests always show anaemia...etc, etc. I don't seem to have any major organ involvement, but I think it's affecting my nervous system, and my gut...is that possible? So incredibly tired, but can't sleep and my hands, feet and legs are burning, aching, itchy, a bit swollen and with pins and needles. My face feels hot and itchy too. Brain fog and exhausted. Sore back and knees and always feel incredibly sick. I can't get an NHS GP appointment until mid June, and he has never referred me anywhere. I have been paying privately to see a rheumy in London (but he's gone away for 8 weeks) and have seen an Endo privately too (so am taking T3). No real help from any of them...but I do feel OK some of the time.
I take T3 twice a day, hydroxychloroquinine twice a day and have a supply of hydrocortisone. My rheumy thought I had Addison's and needed the steroids again, but endo said that my levels were picking up so didn't commit..said probably best to wait as it was like "kicking the can down the road"..whatever that means?? I think he means that I will need to go back onto them sometime, but maybe wait until I absolutely need to.
So sorry to be so boring, and I know that lots and lots of you are much, much worse, but I am literally trying to get through the days.
What are we supposed to do with this? Does anyone have any advice on alternative medicine? I went to see a nutritionist/homeopath last week who gave me a diet sheet that completely contradicted itself...but basically said that I should cut out everything. Now that I've read it properly (it even takes me a while to read and understand), I need to go back to see her to understand what she thinks I am allowed to eat. Despite saying that I wasn't eating enough for good nutrition, she's cut out oily fish, flat fish, meat, any grains, spinach and lots of other veg, potatoes (sweet and normal), eggs, lettuce??, most fruit, dairy etc. etc.
I also have horrible hormonal migraines (for a week each month) and periods that stop me leaving the house for a couple of days. I can't help thinking that there might be somebody 'alternative' out there who could help. Any thoughts?
Sorry. In a panic as I don't want my children to know how awful I feel and they are about to come home for half term, and I need to find some energy.
I know we're not doctors, or allowed to give 'medical' advice, but I suspect that some of you are better than them so any pointers in the right direction would be gratefully received.
x
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puffyface
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Well you sound almost like me it hasn't effected my internal but I feel like crap I throw up a lot and nausea and then. I have lesions on my neck sun beats me up everyday however the nerve part is annoying and frustrating !!! I am too anemic and my fiancé has gotten me some vitamins mostly B vitamins and has given me some grape seed oil also known as tinksters made out of weed when. I got my levels checked after the rude awakening I took it for three months and my levels where stable but when I got off oh boy it hit line a hurricane so you are not alone. And I think we come here to hear from people have had it longer than us. Also it made me feel a lot better . And you do notice the difference after about a week or two. And also my anemic has went back up !! I went from losing a gram of blood a week to gaining blood back and won't need an blood transfusion. . Also ginger root organic stuff it's hard to live like this I know but we all got each other regular people don't know how much life changing it is and the craziness we have to live with lol hope that helps
I would be wary of the dieting advice; if it sounds like nonsense, it probably is! Firstly I'd suggest getting some blood work done and eliminating other issues: anaemic, perhaps? Is your T3 dose right? If flaring maybe the quinine isn't the right med for you? Vitamin problems perhaps that would show in blood work? Have you had any testing for Crohn's? If you're in a flare (sounds as if you are) things will definitely be 'off'. Take it one day at a time - even if going for alternative options you need to know what you're trying to tackle, and why. There is no cure for this. Anyone who claims otherwise is trying to sell something.
For the pain, I'd try to see your GP faster than the usual booked appts which are some way ahead. Does your GP surgery allow you to speak to a GP? Very often, the GP has faster appts to hand out the same or next day. There is no way I can hide pain from my older sons, and your children could easily be the same. Pain leaves you in brain fog at the very least, and worries those around you.
Have you had your Vit D levels checked? Mine were extremely low and supplements for that made a huge difference.
Personally, I'd avoid a nutritionist, because there are so many who call themselves that with no training. You don't mention what your stomach problems are but, again, telling your GP and a referral might help. The diet advised to you sounds absurd, in my opinion. ( and I've had such eating plans suggested that would most likely leave me very ill, even if possible to follow.).
I can't advise much more, but am sending a hug x
I agree - the nutritionist sounds like a quack to me. I'm on a very restrictive diet myself - the AIP diet - but at least I've told my GP who weighed me and I know the cause of most of my symptoms (Sjögren's). And it is a very established diet and I am able to eat plenty of nutritionally healthy foods on it.
I tried T3 at the advice of an endo I sought out privately. I ended up feeling very unwell on it and the GP referred me to an NHS endo who took me off it but raised my dose of T4/ Levothyroxine. This sorted out my anxiety, palpitations and worsening GI issues. Some people don't react well to T3 and I was one of them. The very nice NHS endo suggested that it can even be dangerous. Twice a day is a lot too!
I take Mycophenolate for my inflammatory neuropathy and other stuff for Raynauds. I'm still in pain often and can't tolerate any pain meds at all - but I do feel better knowing that I have a good neurologist and rheumatolgist monitoring me and knowing that my Sjögren's is responsible for most of my problems.
I can't advise about the half term but think you should try and get an urgent GP appointment - usually by phoning reception first thing in the morning. If you can't cope with severe pain then this is urgent in my book. The GI issues need addressing asap. Tell it to them as you've told it to us.
Addison's is a serious disease and the endo should be working this out now not waiting. The diet you are on might be very bad for you if you do have adrenal failure or even insufficiency. You need high enough salt content and a well balanced diet at the very least.
Thank you all for your very helpful replies. I'm having a morning in bed because my legs and feet hurt and I'm in a fog. I think I'm going to try to get an emergency appointment tomorrow if things aren't any better. I really need my GP to refer me to a local rheumy, and maybe even a neurologist. I'm too scared to change endo as t4 made me feel awful.
It would be good to have something for the pain in my legs as normal painkillers not working. However, worried he won't refer me...again..say he'll speak to my docs in London...and won't...again...and that he'll send me home with some amatriptaline...which will put me in a worse fog!
I have a bunch of the same symptoms as well. I always am nauseated and sick, even when things are "under control." - We are always seeking better.
I think that he means by "kicking the can" that he doesn't want to move to fast or pass it on down the road before figuring out the full solution. (That's what it's supposed to mean anyway). Plaquenil can take several months to start working at full strength.
My Dr started gabapentin and Plaquenil at the same time and now, darn it, they don't know which one was the effective one! Ugh. You can't change too many variables at once or you don't know which one helped/hurt the situation (so annoying, but true).
Gabapentin will help some with the nausea and a lot with the burning and neuropathic pain. I definitely recommend it.
Hi Puffyface - I had level 4 adrenal failure and they thought I had Addisons but actually I had SLE, Sjogrens and RA. At that point I was really ill and was on bed rest but told to cut out gluten and dairy and put on a lot of supplements on top of my meds. A year after being diagnosed I am on the AIP diet as mentioned by Twitchytoes and it is helping hugely. However when you are really ill it is probably inadvisable. I am actually a qualified nutritionist myself (non practicing) and diet can be a powerful thing but I would urge you to look at the Auto Immune Protocol diet which is devised for people like us and concentrates on getting goodness in. I don't understand the reasoning behind the diet you mention. Another thing that made me feel better was to go green on washing powder, skincare etc as it reduces toxic loading when we are full of meds - worth a try. A big hug for you, it can be very bleak at times x
Well I use Ecozone washing liquid and it works well. I have tried others that aren't so good. I had bad skin problems which improved when I switched. I changed to green shower gel skincare cleaning products - the whole lot!!
As others in the community have already mentioned, please take caution with the advice given to you by this 'nutritionist'. Are they registered and certified?
We have a blog article with some information about diet and healthy eating with lupus which you may find helpful. You can read it at lupusuk.org.uk/diet-and-hea.... For expert assistance with your diet I would recommend talking with your rheumatologist and seeing if they are able to refer you to a nutritionist at the hospital.
If your GP Practice is not able to offer an appointment for a few weeks, have you considered changing to a different one? You can find information about doing this towards the end of our article here - lupusuk.org.uk/getting-the-...
Many GP Practices reserve a certain number of slots for same-day bookings if people call in the morning.
Regarding alternative/complementary medicine; I would encourage you to always discuss this with your consultant before starting any additional treatments so that you can be advised of any potential adverse effects or interactions with treatments. It is important that you make sure you see practitioners who are certified and registered with an appropriate organisation. It is also very important to bear in mind that lupus is different for everyone, so what works for one person could be potentially harmful for someone else. This needs to be considered when taking advice from other patients.
We have a couple of other blog articles that you may find helpful. One is about pain management and the other is about brain fog. You can read these at;
Puffyface, I landed up having several flares, heart attack and all sorts of complications as a result of not getting an appointment and treatment in time. Changed my GP and never looked back...was treated with such care that I could not ever imagine. Am not sure I can recommend my Doctor and RA consultant here but if allowed please reply and would suggest moving immediately (near wembley and harrow). They both are simply excellent!
I don't think you are allowed. Actually, I am going to see my GP in June and insist he refers me to a rheumy and a neurologist in Oxford. I'll keep seeing the endo I see in London as he understands what's wrong, but I need to have specialists to help close to home when I flare. I don't mind paying for them..then he can't argue. I think he wants to deal with it himself, but is too busy anyway. At least he gives me all my meds...and I know that most nhs won't subscribe t3. I've also made a promise to myself to do the autoimmune paleo diet, so maybe won't need doctors any more anyway! Thank you for your reply. Have a good day. X
Rubin's 786, sorry, posted my reply by mistake before I was finished typing. That sounds awful. Are you better? If they'd seen you quicker would the problems have been avoided for you? Hope you're feeling much better. X
Yes am much much better now. Think they thought I was faking it...went from an active yoga person to bed ridden in few days. But now no zimmer frame needed Some flares occasionally if emotionally upset but for the most part functioning normally. Can't undo the damage caused to my heart due to OD of Prednislone in emergency and sudden stop but thats fate ...it might have happened anyways. Had 2 sessions of multiple stents and seems ok. My new doctor is amazing and keeps everything in check herself! My love to all on this site. God Bless xox
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Some flares occasionally if emotionally upset but for the most part functioning normally. Can't undo the damage caused to my heart due to OD of Prednislone in emergency and sudden stop but thats fate ...it might have happened anyways. Had 2 sessions of multiple stents and seems ok. My new doctor is amazing and keeps everything in check herself! My love to all on this site. God Bless xox
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