Hi all, apologies in advance for the really long post but I’m desperate for some help please?
I have Ehlers danlos, Hashimotos and Sjögren’s syndrome. The problem I have is identifying which disease is causing which symptoms. The most troubling issue I have at the moment is extremely dry eyes and mouth and overwhelming fatigue. The fatigue is so bad I can’t mobilise more than a few steps before I have to sit or lay down. It’s difficult to describe the overwhelming exhaustion but I can feel all my muscles burning, similar to when you’ve been running for a long time and can’t go any further. I’m in the Uk and really struggling to find a doctor who knows anything about Sjogrens. They all tend to think it’s just a dry mouth and eyes and only a minor inconvenience. They assume the drops, mouth gels and pastilles solve the problem and the symptoms are permanently managed. Hashimotos, Ehlers danlos can cause similar symptoms but I think it’s more likely these issues are caused by Sjogrens
I have had several episodes of raised liver enzymes, numerous skin rashes and seem to constantly have a headache. I also have the most horrendous night sweats. I’ve become a burden to my family because I can’t do anything and spend most of the time in bed while my family wait on me.
Next to my bed I have
A glass of water
Lip balm
Mouth gel
Xylimelts tablets
Eye drops and eye cream
In my mouth are two gum shields to help stimulate saliva even though they make my gums sore using them helps more than anything else I’ve found.
Several times a night I wake up and have to apply lip balm to my lips, stick tablets to my gums and rub gel into my tongue. I have to constantly drink in order to sooth my throat and swallowing is really painful. I can’t get drops in my eyes so I squirt huge amounts of drops in the general direction of my eyes and hope for the best! Lost count of the times I’ve managed to poke myself in the eye... What a life! When I eat I have to keep drinking to wash the food down because it gets stuck and causes excruciating pain and I’m forever having choking fits.
I’m taking 400 mg Hydroxychloroquine a day and my doctors aren’t willing to consider anything else, probably because they lack the knowledge to know what to do. I am sick of being told it’s just a flare up which will pass because the flare ups are relentless with no respite in between. Everything you read on the internet seems to indicate that Sjogrens is manageable but that’s definitely not my experience. It’s completely debilitating and I seriously don’t think life’s worth living like this!
Does anyone else have these problems or had them and is on alternative treatment to me that works ?
Kindest regards 🙁
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rosserk
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You say your liver enzymes have been raised. Have you been checked for Pbc? It’s a autoimmune liver condition that often goes hand in hand with sjorgins.
I too have the burning muscles and my Rheumathology dr says it is caused by the sjorgins and is peripheral neuropathy. Sjorgins is much more than dry eyes! I mentioned the pbc because i have that too. You need a Rheumathology specialist for the sjorgins but you really should insist on being tested for PBC
Hope you find someone who is sympathetic and can help you with the symptoms.
My Liver enzymes keep elevating but because they go down again Doctors are ignoring them! The last time they were so high the hospital phoned me to go in for emergency scan but everything was fine on the scan so they ignored the fact they’d gone up because they came down again. I know when they’re raised because I get a terrible rash and feel horrendous!
My heart goes out to you. I am interested to hear what others may think. My symptoms are close in line with what you describe. I have Sjorens plus Fibromyalgia and the rest as others.
Sjogrens can mimic different diseases a different times. The problems your having with fatigue, and skin could be a blocked liver from the medication you are on.
You need a good liver detox tablet or liquid, if you drink half a lemon juiced in water first thing in the morning this will cleansed the pancreas as well. If possible you need a regular massage to get all your circulation moving and you need to lay on the floor and get someone to push you shoulders to the floor to open your chest cavity and then breath as deep and as many times as you can increasing each day.
When your eating to help the food go down drink soda water or something with bubbles to push the food down, I find soda water helps with pain associated with eating.
With the inflammation you need to take fish oil
When I was in pain I used to take 8 a day.
Also Turmeric tablets are good, I also take half a teaspoon of bi-carb soda daily and celery juiced 16 ozes a day will give you energy hope this helps.
I agree with the fish oil which was recommended by a dry eye specialist. He also recommended Theratears eye wash, used externally. I'm also advocate for low acid, gluten free, dairy free very low sugar diet. If then you feel better you could add back small amounts of a single food to judge your reactions. Tumeric great idea & will try the lemon cleanse myself. Vitamin D good for energy. White willow bark can lessen pain some. Can you get CBD oil? It's supposed help with pain, too. Your stress levels must be high so massage, yoga, any exercise, lymph massage, Etc will help. You can do your own face, neck,lymph massage. Instructions online. Feels good anyway. Check out Himalayan salt inhaler, essential oils or homeopathy for sinuses\face pain. I'm gonna stop finally. Feel free to ask for more info. on anything.
Hi, I'm on hydroxychloroquine twice daily plus methotrexate once a week. It helps me a lot.
My old rheumatologist also had me start on curcumin supplements (the active ingredient in turmeric); if I ever think they don't help, I change my mind after I run out. She put me on fish oil, too; if it stinks, it's not a good brand. And she started me on an anti-inflammatory diet -- autoimmune protocol (AIP) -- modified for my food allergies / intolerances.
I'm also using cyclosporine eye drops, once a day (bedtime), which helps the dry eye a bit. I recently found some eye drops online that have hyaluronate; they work better than any other optical lubricant I've found.
Biotene toothpaste doesn't dry, which is helpful. And yes, the xylimelts totally rock.
I have a little sleep apnea, too; the humidifier on my CPAP machine is a lifesaver. A humidifier in the bedroom will give some of the same benefits.
Sjogrens.org has some good resources that might help you with your rheumie.
I have ME, too; ribose helps me a bit with the fatigue. I get the bulk powder and just add a spoonful to my tea, but a small bottle of capsules will let you know if it helps you.
Hi, thank you for the advice I will ask my rheumatologist about the eye drops mine aren’t helping at all! I’ve been taking fish oil religiously for about 6 months. I will also try the toothpaste. Kindest regards 😉
I have terrible night sweats and have a fan running all night at the side of my bed I think a humidifier would push me over the edge in terms of noise and sleep deprivation. I am going to pursue punctul plugs I think 🤔
As you may remember I’m in Scotland UK - have same combo as you apart from can’t get anyone to diagnose EDS here in Scotland but I’m pretty sure as my late mum had a collagen disorder and I have most symptoms according to EDS diagnostic guidelines. I also have long-standing Hashimoto’s.
I have a humidifier and it’s wonderful - barely any sound (faint white noise is good for my tinnitus!)! Fan would very be drying for eyes surely?
My situation is pretty similar to yours apart from eyes just stay continuously dry but not worse - my GI and ligament problems and chronic cough are the pits now though. Also I have very extensive small fibre neuropathy. I too have huge night sweats - but you need to report this because of the increased risk of lymphoma with SS.
I’m seeing a rheumy privately in Glasgow a week tomorrow as my nhs team are trying to dispatch me back to GP with “just Sjögren’s”. They are determined that my SS is relatively stable and keep saying there are no treatments (I’ve tried and failed to tolerate them all) so they don’t keel SS patients. This chap is on the Sjögren’s registry and sounds good so I’m hoping I get
Hi I have sjogrens & SCLE & various other medical conditions. I am on hydroxy & mycophenolate which helps me to try & keep moving everyday and have enough energy to work. I think reading the Rheumy British guidelines for treating sjogrens would help you understand treatment recommended here -
academic.oup.com/rheumatolo... and the doctor who chaired the writing of the guidelines is dr. Elizabeth .Price who rheumy specialising in sjogrens and does see patients privately or through nhs in Swindon... Also, sjogrens.org for further information & support. ml
Hi thanks for the advice. I joined coeliac uk at a cost of £25 per year and didn’t think it was worth the money so I’ve held off on registering anywhere else. I might take another look at sjogrens uk. 😊
Where are you? There are some very good Sjögrens docs in UK. SS is horrendous. It’s definitely not just a dry mouth and eyes as some gps think. Please get yourself to a good rheumy, specialising in SS if you can.
Join the BSSA and read the articles from specialist docs. As far as I understand it dr Elisabeth price at Swindon and prof Simon bowman (Birmingham?) are very knowledgable.
Had them fitted last week, while not a cure they have certainly helped! I only have the temporary ones which dissolve after about 6 weeks , but will definitely be getting more
I’m going to ask about them trouble is the waiting lists at my hospital are ridiculously long so it won’t be a quick fix but in the long term I think I’m going to need them.
Where about in the U.K. are you? I see a rheumatologist at Central Manchester Hospital in the Kellgren Centre who is very good and understands that this isn’t just dry eyes and dry mouth. In fact he said for lots of ppl those symptoms don’t even develop until much later and other symptoms come through first. Everyone’s experience with sjogrens seems different. I understand the fatigue, I describe mine like a dementor from the Harry Potter films has sucked the life and energy out of me because it feels so out of my control and my soul and brain want to keep hold of the energy. I’m not on anything atm other than eye drops, but I’m only in the process of diagnosis and waiting a few more tests first, although he did offer me prednisolone and hydroxy from the get go, I didn’t get on with the prednisolone at all so decided to wait for the rest of these tests before trying the hydroxy. I’m not anti meds’ but I would like to do this as natural as possible if I can. If I knew something could significantly help my worse symptoms then obvs I would take anything! I have very bad light sensitivity which significantly impacts my life and what made me had to leave my job of nearly 10 years. I’m desperate for help with that. No one seems to be able to offer a solution just yet but they are actually trying which is all I can want after 3 years of ‘I don’t knows’. I have found help with fatigue through diet and supplements. I still have flare ups but it’s not a constant fatigue like it used to be, although I do have exercise intolerance and if I do too much of anything I pay for it! Yoga is my new spin class haha I’m fine in my little bubble with my little routine at home. Feel free to DM me if you want to discuss your location in private xx
You are right about diet being important in moderating SS symptoms. I think we need to do whatever we can to keep body stressors as low as possible. This includes avoiding inflammatory and acidic foods, physical and mental stress, inactivity and hormone & vitamin, etc. imbalances. If I stick to a routine much like yours, I just feel better. When I don't exercise, my joints hurt. If I eat the wrong foods, I get itchy and my hands are stiff. Paying attention to our bodies and how we react to things and adjusting how we care for ourselves can go farther than medications often.
Agree with everything you’ve wrote there. I often wonder if I’ve got leaky gut with the way my body responds to some foods. If I eat the wrong thing it makes me feel rubbish, it disturbs my sleep, I feel hungover the next morning (I don’t drink alcohol I’ve become intolerant to that as well since this all started). Same happens if I don’t quite drink enough water that day, 3 litres of still water seems to be my sweet spot. If I don’t do my yoga regularly my muscles start to hurt in my upper back and shoulders. Just 20 mins of light yoga at least 4-5 times a week makes the difference, it’s quite amazing. I avoid refined sugar as much as possible, also artificial sweeteners just as bad. I took up juicing after watching ‘Fat, sick and nearly dead’ I honestly feel better when I have my green juice daily. There are a few very rare days i almost feel ‘normal’ but the light sensitivity is there no matter how I feel which is very frustrating. I could be having a better day and then I go into a shop or wherever with lights that affect me then boom, it sucks my energy and makes me feel sick. But that’s an improvement in my books as I used to feel awful every single day. My body seems to be able to now recover a tiny bit better if I treat it right. My body can’t deal with any stress even if my brain thinks I can. Even the most minor things it responds badly to any stress. I seem to flare on my period, I often think if the hormone fluctuation and inflammation from that is what causes a flare to happen during that time. I try to buy organic food where i can and if funds allow it. They should prescribe that to us instead of throwing pills at us whilst in the same sentence telling me there’s no medical cure for this 🙄 but yeah in my little daily bubble I can manage, but I do want more... I want to be able to work again, go to a gym again, and be able to go anywhere and not get symptoms from lighting. But for now, very tiny progress is at least progress. I’m stopping pining for my old life as I know I can never get that back, it’s gone. I focus on the positives of what I can do now and find enjoyment in new things x
Absolutely agree! Eat to reduce inflammation and support your body systems.
Your light sensitivity was "eye opening" for me (ha ha). I do notice mine and wear sunglasses a lot. But it's not debilitating. Then I read this article naturaleyecare.com/eye-cond.... I have a lot of macular degeneration in my family so have been taking eye vitamins for many years in the AReds category. It contains Lutein, zeaxanthin and other supplements that the article recommends for photosensitivity. So this may be another thing to try, and to pay for unfortunately.
B Complex vitamins and CBD oil, if you can get it, are good for counteracting stress. I just heard about Dream Water which is a natural product to help you sleep. As sleep is a crucial component in our struggle for health, I will be checking this out next.
We will figure this thing out even if most of the medical community isn't interested. Onward!
Sorry not responded not been on in a while as you can imagine from light sensitivity I try not be on here too long as phones and computers also set me off. Yeah my light sensitivity is life changing for me, places I can’t go to anymore. I’d love to just be able to go anywhere and not feel unwell. I don’t get anxiety over it, I can be happy as Larry and it suddenly hits start feeling dizzy, pressure builds in my head, then wham I just go eurghh I need to leave so annoying. I don’t panic over it but I know I need to leave or I’ll be really unwell for days. I take high strength b vitamin complex and cbd oil already haha been looking into that luetin etc and that sounds interesting and may be worth a go. I also take vitamin d, high strength cod liver oil, magnesium, probiotics and this collagen cocktail I found out about with lysine, vitamin c and glycine, it’s supposed to have proline in as well but I’m finding that hard to source in the U.K. in powder form so I may have to have the tablets instead. I spend quite a lot on supplements already but I feel they have helped with certain things over the years so I wouldn’t be without xxxx
I just posted about eyeglass lenses that reduce the blue light. They have been found to reduce headaches and other symptoms related to fluorescent and other artificial light. I'm going to try it.
Funnily enough I’ve come across some that offer a blue light filter without the need for a tint so I’m going to give them a go. Drs didn’t think they’d be super helpful but even if it just takes the edge off it would help a bit. Going to get mine from glasses direct I think it’s about £40 to add that filter on xx
Hi, interested to hear about your light sensitivity and started to wonder if the lighting is why I always start to feel worse in the supermarket. I too am seeing Dr Parker at Kellgren and awaiting the same eye and dental referrals by the sound of it. Oestrogen being relatively high can affect all autoimmune conditions and I find I struggle with histamine particularly at the start of my period so try to keep my intake low and use magnesium (foot bath, also very relaxing and keeps me regular!) and quercetin if I really need it. I have been doing some meditation and breathing for my stress and getting outside more, focusing on positives but also have been using an adrenal glandular as my cortisol was very low on testing. Best wishes
Hi 🤗 so nice to find someone who is local and seeing the same dr what are the chances!! As above my light sensitivity is life changing for me. It’s the reason I had to leave my job, I was working through the fatigue and other symptoms but when that started it was a massive game changer there was no physical way I could work through that, I tried my best throughout a few months to go back but each time I did I ended up in so much pain, couldn’t see properly, dizzy, felt sick, could not function. It’s most artificial lights, I’m ok with halogen lighting if it’s warm white and old fashioned incandescent. Any blue/white lights are a no, some places are worse than others. So it may hit me within seconds of being under certain lights or it may take up to 20mins. First sign I feel disorientated and my eyes just can’t focus on things. I wonder if that’s to do with the flicker frequency we can’t actually see but it’s there. Then I feel pressure building in my head and nose and feel dizzy, sick etc. I’m fine in sunlight although I can’t sunbathe like I used to it sucks my energy out of me so I get extreme fatigue from that and I get rashes. I had all my hormones checked and everything was fine. My ANA was positive and my SS-A was 7.8 (testing range for normal is below 0.9) although I think it went to 8.something when they tested it recently. Sorry if I’ve repeated myself to anyone if you’ve read the previous replies. I’m finally going for my USS next week, after supposedly being referred in December when I last saw him. They messed it up. Lip biopsy planned for July although the oral surgery place said that if the USS comes back positive then they’ll be no need unless Dr Parker still wants it done. How do you feel in supermarkets etc? Are you ok on devices? Did he give you medication to try? Xxx
Hi, it is nice - I was really surprised when you mentioned Kellgren. I asked for a referral for possible antiphospholipid syndrome but no diagnosis yet and no treatment. Don't seem to be testing positive to enough, unlike you. I only saw him in March (1st appt) and am due to go back in July. Have you had the eye appointment yet? I have no dates for either but am just writing with some things I forgot so perhaps I should mention it if they messed up your re-referral. I really hadn't connected lighting so will have to pay more attention, but I do get dizzy, swimmy-headed, pain/pressure in forehead in supermarket more than other shops. May be the chemical sensitivities or the gluten or other peoples perfumes etc as all are a problem. Eyes are a problem generally so will be interesting to see what the referral comes up with. Only use computer when I have to, no other devices. Best of luck for useful USS next week.
It’s difficult and a long process. He said to me from the get go in can take years just to diagnose someone correctly. I’ve already been unwell for 4 years now and only just did those blood tests with my GP last June/July. When did you start with your symptoms? Yes I was seen at the eye hosp in Feb, lovely dr, can’t remeber his name. I’ve got blephritis which is common in sjorgrens patients apparently. This can also cause light sensitivity, but I doubt that’s the sole cause of it prob just makes it worse. So I was given fucid acid gel drops for that. My eyes were only scoring as mildly dry, even tho they feel more to me. Dr Parker said this can happen and sometimes takes a long time for it to show. I was given hyloforte eye drops as well. They help the uncomfortable feelings I have on my eyes but unfortunately there’s nothing he could suggest for light sensitivity which is disappointing. No one seems to be able to help with that. I’m seeing the eye dr again tomorrow actually for a follow up. When I went to oral surgery I thought they would just do the lip biopsy there and then 😂 coz I thought that’s what I was referred for. She was questioning me for an hour on my mouth symptoms, slightly ott when all I could say is it feels dry and I feel thirsty all the time, but she was thorough at least. Dr Parker discussed trying prednisone and hydroxychloroquine, said I could take it straight away or wait until I’ve had all my other testing. I tried straight away but my body did not respond well to the steroids so I’ve left it for now and we will discuss that more when the tests have been done and see what’s best. He’s told me from the get go he may not be able to give anything that helps my symptoms as there’s no medical cure, it’s just a case of trying and seeing if something can manage it. So I appreciate his honesty. I chose to see him as my second opinion from a rhumatologist in Bolton who just completely dismissed my blood results and within 10 mins diagnosed me with fibro! Kept trying to give me pain meds even tho I repeatedly told her I’m not in pain. She was awful. Thankfully GP suggested a second opinion before I did xxxx
My rheum was Rochdale and she diagnosed fibro, too! I have had some of those pains for 20 years, but 1st autoimmune condition (vitiligo) probably started to appear 9-10 years ago then I had 1/2 thyroid out and all downhill from there. Thanks for warning about long oral appointment - I knew it wasn't for the biopsy as Dr Parker said they would tell him if it was necessary and then they would do it - he can't just tell them to do it. My eyes so far are only slightly dry too and have actually been much better since I went gluten free etc. Trying to concentrate on getting ferritin, vit D, B12, folate to a better level as can't get anyone to pay any attention to underactive thyroid as yet. Hope all goes well tomorrow and shall chase my appointment in case he has forgotten me!
Yes def chase things. Once they redid my USS appt I got it through the post in a few weeks. No wonder it takes so long to diagnose people, so much waiting around. Sorry to hear you’ve been suffering for many years. I was only 27 when this started, it changed my life massively. I do believe these theories about our gut, really could be onto something. Really recommend taking good probiotics esp if you’ve had to have a lot of antibiotics over the years. I take bio kult and I’m on 4 a day, built up slowly, they’re strong. I got a herx reaction when I first started taking them. They’ve really helped my stomach issues and I will continue to take them long term. I too have cut out refined sugars, artificial sweeteners - spat that sweet out they give you for your spit test at the dental hospital, not had anything like that for a long time and it tasted horrible and synthetic to me so once the test was done I didn’t want to eat it, the nurse thought I was weird haha don’t think they’ve had anyone not eat it afterwards. Dairy, although I didn’t have much prior anyway. I’m low starchy carb, I’m practically paleo, I’ll have bread occasionally but I know I shouldn’t even bother as it can flare me up.
Is your ferritin low? Mines high, like triple what it should be. Dr Parker was intrigued by this and said will look into it more but it’s possible that that’s just my bodies way of showing there’s inflammation?!
Thank you, hope I get some more helpful info. If you ever see a blonde girl early 30’s although I could maybe pass for 20’s 😂😂🤞🏼 wearing sunglasses in the waiting room it’s me!! Come say hi xxx
Interesting about the probiotics, thanks. Certainly been working on my gut for some time and agree about importance/relevance for AI. I stopped dairy too and am on AIP. My ferritin has been really low for a long time, don't know much about high except hemochromatosis. Hopefully Dr Parker will get to the bottom of it. I am now 54 (look older and feel it!) I shall be checking who is in the waiting room each time x
Yeah have a look into the probiotics you may find them helpful. L-glutamine is good for healing the lining of the gut as well. Please do and let me know how you get on with all your referrals and testing and I’ll let you know when I’m going and keep you up to date as well 🤗 my names Lauren xxx
I’m in Hereford, my doctor has refused to refer me to Elizabeth Price Swindon so I’m looking at going Private. I haven’t come across anyone willing to help me and I’ve been told twice by two different specialist that they have done all they can and I will have to live with it!!
Hi, def go private, if they feel they can help you more they will transfer you onto their nhs waiting list. I would recommend the kellgren centre in Manchester or any centres of excellence I think their rheumatologists are used to more complex cases and are happy to look into things, think outside the box. The kind of consultants we all need. As good as mine seems, and as I’ve said to others above, he has said he may not be able to help my symptoms but he’s at least trying. It’s awful when you just feel left to cope on your own. Why have they refused to refer you? There can be lots of complications in sjogrens it can affect you entire body so you need someone who can monitor you and not just think it’s dry eye and dry mouth. I’m lucky I have a good GP on my side, she wasn’t having any of what the first rheumatologist I saw said. Dr Parker said he would START with hydroxychloroquine as it’s the safest but said there were others to try if that didn’t do anything or didn’t suit me so there are drs out there willing to treat further, it’s a constant battle keep fighting xxx
It is so disgusting when a doctor says that you just have to "live with it". There are so many alternative and natural things to try, co-occurring things to address like sleep disorders, varying doses not to mention new information coming out all of the time. Keep taking care of yourself the best you can.
Dear Rosserk, I too have Hashimotos and Sjogrens (and many other issues associated with autoimmune I will not bore you with). I understand completely how you are feeling and the frustration in obtaining qualified help. I also have a similar list of items next to my bedside. I have suffered with autoimmune for some 30 years, and until recently, have not received/known about proactive and preventable treatment. Firstly to explain, my research has been more about trying to find out the root cause and preventing autoimmune rather than just treating my symptoms. This has taken me down the functional medicine approach. I have been watching many of Dr Peter Kan's videos on YouTube (AskDrKan) and have found them truly inspirational and educational (an American doctor).
Functional medicine focuses on the root cause of illness and is supported with appropriate nutrition and supplements for your particular situation.
I am now in the process of making an appointment and undergoing a treatment plan with Dr Kan. I live in Darwin Northern Territory in Australia (born in Liverpool England :)) and so will do this via video conference and with the support of my local GP.
After my research and listening to Dr Kan's video's I am now of the belief that you treat 'autoimmune' and find out your own 'root cause' and 'trigger', rather than any specific autoimmune disease (apart from elevating the specific symptoms of course). What I mean is that autoimmune is autoimmune and what it attacks (e.g. thyroid, eyes, mouth, saliva glands etc) is not the key issue.
I hope this is of help to you. Take good care of yourself.
I definitely think the root cause of all my problems is stress! I’ve spent my entire life in an extreme state of anxiety. I am currently looking at techniques to cope with stress, including relaxation. I hope your appointment goes well with Dr Khan good luck!
Thanks Zuber, I am definitely going to be asking for a referral to see her, I have an appointment with my doctors tomorrow. The problem is usually the wait times but I will see about going private if they’re too long I see she has a private clinic. 😉
They refused the referral so looking at going a Private it is expensive though but hopefully she can help and offer advice to my doctors without me being forced to keep going back. 😭
PS thinking more - the problem for us both could be that we “only” have Sjögren’s so cant access other treatments that might help in the same way as those with RA and Lupus, other CTDs can. So we get booted off clinic lists and left to cope with this “just Sjögren’s” hell all on our own? Especially if seronegative - we are viewed as untouchables. I often think this is why my first rheum never mentioned SS once and left my diagnosis of RA - he knew it was a much better diagnosis for ticking further treatments boxes if I deteriorated. 🤷♀️
I actually have Primary Sjogrens, Hashimotos , Ehlers danlos, fibromyalgia, CRPS and I’m also pre-diabetic so I see lots of specialists who sadly are clueless. 😭
Yes I do too but Sjögren’s is your main rheumatic autoimmune disease so it’s primary. Hashis is just common AI but not rheumatic and usually just for GPs to treat. EDS isn’t autoimmune and loads of doctors, including mine, don’t even believe in it!
If you had RA or Lupus or Vasculitis etc you’d probably have a far greater range of treatment options than with pSS.
It would be a miracle if they did!!i asked my rheum or CTD dr to assess me for EDS. CTD dr got me to do weird things with arms that were all wrong way round from Beighton score, didn’t test my legs, ask family history or my history (I was even born with a huge haematoma on my head and each baby led to me needing catheterised after due to haematomas - my late mum nearly died of stretched intestine forming a knot due to a hereditary collagen disorder! I have bladder prolapse, tilted cervix, gallbladder was stuck to my liver causing post op sepsis - very hypermobile as kid and still am quite even at 56.. and so it goes on. But this arrogant twerp clearly thinks EDS is a non existent disorder as no bloods or drugs so it doesn’t count.
I guess it doesn’t matter but I’m not a self diagnosing type and I hate not feeling believed. So now I don’t trust a word this man has ever told me and it comes as no surprise at all that Sjögren’s patients are being kicked off list with “just Sjögren’s”. I pointed to Hashis and he just said “so? That’s not my area so I’d not keep you just for that! Sjögren’s is just dry eyes and mouth, some neuropathy or Pots or non erosive arthritis and fatigue. It doesn’t really progress or involve organs and there are no treatments anyway”.
Oh dear that’s a worry I’d be happy to be kicked off his list! Doesn’t he realise sjogrens is multi systemic?
Three members of my family have EDS I was diagnosed by an EDS specialist in Bath. My son was diagnosed at the EDS clinic in London and my Aunt was diagnosed in Plymouth. We all have Marfanoid habitus and a similar history with fractures and dislocations. I have also heart murmurs on three of my valves which don’t currently require treatment.
My fathers sister died from mitral valve complications and was diagnosed with Marfans his brother also had Marfans she was 6ft 3 he was 6 ft 9. My dad remembers both of them suffering lots of fractures and dislocations. It’s likely they both had EDs but it wasn’t around in the 40s.
I’m 6ft and I’ve had too many dislocations to mention and numerous fractures which are all in my medical history. I am currently waiting a surgical repair on my foot for two fractures. I also had spontaneous labour with two of my 45 minutes and 40 minute labours.
I think my kind of EDS is more stretchy skin than bones or joints although my knees bow back like bananas and I score 4-5 in Beighton despite arthritis and stiffening I’m very short and plump and covered in stretch marks and scars with skin like translucent velvet. Lots of petechiae and bruises everywhere. Terrible guts, terrible balance/ coordination. I guess this is why I’m so cross at not being taken seriously about EDS because it nearly killed my mum and she lost 5 feet of gut that had all kinked up to form a huge knot obstructing her bowel at my age.
My sister in law lives in Bath and I’ve thought hard about us relocating back to SW England after 35 years up here. But our 3 young sons all live up here so it’s not really what I want to do just for sake of my health. Bath rheumatology is in a different league to anywhere in Scotland though. You’re lucky to have this option at least.
I tried to tell this wretched CTD dr that Sjögren’s is always systemic but he just smiled arrogantly and said “yes it is - your fatigue and small fibre neuropathy are systemic but they aren’t treatable and anyway that’s likely as far as Sjögren’s will ever go.
He said the feeling nauseous and flu-like is just down to attending chronic illness/ pain and degenerative discs and I should have CBT to accept this. The thing is I have no way of proving I’m right and he’s wrong. Not does he but then he’s got the power!
I really can and do accept things when they feel right to me but chronic illness doesn’t feel like a good enough fit somehow.
The thing you said about burning muscles, have you ever had your CK or CPK or Aldolase tested? Via blood test. These tests can assess if you have muscle damage going on, possibly from myositis. Inflammatory myositis conditions are autoimmune, but Sjogrens can also be highly associated with myositis. There was a large study done of over 1000 people with sjogrens where 70percent we're found to have subclinical (or clinical) myositis by muscle biopsy. Google Subclinical myositis in Sjogrens syndrome and you should find it. A simple blood test can determine if this is a factor. If positive, Next step maybe neurologist referral and possible nerve conduction studies and EMG testing before a muscle biopsy would be considered. But CK could be done periodically as negative now doesn't mean negative always.
I have absolutely no chance of my doctor ordering any blood tests. I have just been informed that he’s refused to prescribe medication recommended by Dr Elizabeth Price! I am beside myself I had to pay to see her privately and now my GP won’t agree with her advice and there’s nothing I can do. I am devastated!
Thanks, I don’t know what good complaining will do. I have discovered that a Doctor is perfectly entitled to refuse to prescribe and there is nothing that can be done.
Phoned the surgery and another doctor called me and agreed to prescribe pilocarpine and hylo tears I have to wait till I’ve had op on my foot before they prescribe mycophenolate. But st least it’s something!
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