Please help

[puffyface]

I am 53 and have been struggling with illness for about 8 years now, have bloods and appointment with GP in the next week and due to see my rheumatologist this week too. I have Hashimotos and primary Sjögrens or a Lupus/Sjögrens overlap depending on the day it seems. I take T3, hydroxychloroquine and amatriptaline for the neuropathic pain in hands and feet…and lots of painkillers.

However, everything is getting so much worse…and instead of my usual trips to the doc where when they ask me how things are, I say ‘all fine’….this time I’m going to say ‘not at all fine’.

Rhuemy has suggested methotrexate, sulfasine?? and some other rheumatic drugs in the past. I have said no because I don’t want to take these drugs before I have to…and also because the pain seems to be muscular and in my tendons. I suddenly remembered her saying you can get fibromyalgia with these diseases and am wondering if this is in fact the major problem. I wondered if I asked about some of the symptoms, some of you kind people might tell me if I could be on the right track in order to prepare/suggest with docs?? Here goes…

Very stiff in morning, pain in tendon from behind knees into calves, burning painful hands and feet, lower back pain, tingling painful calf muscles, pain in muscles running along both shoulders and neck, muscles in arm and legs sore to touch, dreadful brain fog, balance poor, tummy issues, headaches, gritty or blurry eyes…..etc. I also find that when I do even gentle exercise, my body is in an not proportional amount of pain afterwards.

I am wondering whether because I have a high ANA they just assumed this was autoimmune and actually it’s not…or perhaps you have them together? I just feel like this more muscular than joints and I would like to make them understand that when they think of how to help.

Sorry about long, complaining message. I would be grateful for any thoughts.

Thank you in advance.

[Hidden]

I would suggest getting tested for B12 deficiency, autoimmune conditions. Classic symptoms

[Allingham60]

I too have Primary Sjogren's with a high ANA and also have fibromyalgia symptoms exactly like the ones you describe: pain in muscles in all four quadrants of the body, tingling legs and feet etc. I also have extreme fatigue.

When first diagnosed 2-years ago I was told I had both Primary Sjogren's and fibromyalgia. However, my second and current rheumatologist said I had Sjogren's alone and my aches and fatigue were due to that.

I personally think I have both although it is hard to say which disease causes which symptom. (All I know is they hurt!) I take hydroxychloroquine for the Sjogren's and Pregabalin for the fibromyalgia symptoms.

[Hazel_Angelstar Administrator FMA UK Staff]

It is possible to have fibromyalgia alongside other conditions, so worth having a conversation with your gp/ rheumatologist if you feel that this could be the case, and you feel your symptoms are not related to your other conditions

[Cat00]

Your symptoms are just like mine. I have fibro, amongst other things like chronic migraines and IBS. I have been tested for Sjogrens but they said I didn't have it.

[bora62 in reply to Cat00]

Just to ask you what Tests did you have for Sjogrens please ? I am convinced with my symptoms that this is what I have along with my fibro x

[Cat00 in reply to bora62]

It was a blood test, although think it is not absolute. She said Sjogrens was pretty rare so didn't expect it to come back positive.

[bora62]

Hi I havea lotof the same things I suffer from pain, tummy, stiffness etc. I was ok on hydroxychloroquine untilhosp took me off it saying it was causing palpitations !! Had them for years way before starting HC. Tried methotrexate but the feelings of nausea outweighed the benefits (if there were any! ) Hope you get the answers you wantor need. X

[PBMB]

hi ,

I’m sorry to hear this .

It is so difficult to know for definite isn’t it but your symptoms list could me my symptom list .

I started a few year ago with tummy pains and pins and needles / tingling / burning skin and skin rashes had loads of tests / scans all clear but know of it went away pain in legs and back and now I suffer with awful brain fog .

I don’t know how helpful this is but just wanted to give you some idea 🤷‍♀️

You also need open minded GP to help

Hope yuu get some answers

[Alb2]

I too have very high ANA and diagnosed with Sjorgrens, Fibromyalgia and hyper mobility syndrome. It’s the connective tissue in my case that causes most of the pain and stiffness. If I don’t do gentle yoga stretches each morning, I couldn’t get going and having hot baths helps. Like you, it’s not bone pain that is the issue but I’m more prone to problems with ligaments/tendons. The dry eyes though can be a real nuisance, even with the drops I'm prescribed😔

[puffyface in reply to Alb2]

Thank you all for your really helpful replies. It’s all so hard to work out…but I think perhaps for our doctors to help us with, so at least we understand what’s going on. I’m going to suggest that I don’t take methotrexate…but ask if there is something that might help with connective tissues. I’m pretty sure that muscles and tendons are worse for me. Eyes, fog and fatigue might come from somewhere else. Sending gentle hugs to you all and hopefully peaceful, pain free sleep 💤…💙💕

[Mollie22]

HI everyone just wondering what you use for dry eyes. I used lots of different types. I now use Evolve ha 0.2%.. I also have all the body pains you described

[puffyface in reply to Mollie22]

Hi Mollie 22. Hylotears and Hyloforte eye drops are very good. 0.1 and 0.2 respectively. Eye doctor says to take 2g of good quality omega 3 daily. That’s a lot to swallow. He also recommends a microwave eye mask… you have to lie with it on for at least 8 minutes every day. I also use ciclosporin eye ointment at night…but I don’t like it at all…it irritates my eyes more.

I think there are lots of eye products out there…just ensure that the drops you use are preservative free.

[Mollie22]

Thankyou for your reply. Will have to get a eyemask sounds good 👍