Hello! Sorry is this is a bit lengthy. Just hoping that someone might be able to give me some advice or maybe recognise the symptoms that I have.
I am a 24 year old female. I was referred by my GP to see a Rheumatologist in January. I am likely to get an appointment in May. Right now that feels like a long way...
Here is what I have experienced-
Everyday/frequently:
Very dry eyes & gritty sensation in eyes
Eye pain & blurry vision
Dark floaters in vision
Dry mouth/thirsty
Fatigue
Stiffness in joints
Aching hips with sharp pain at times (GP suspects bursitis)
Aching shoulders, back and neck
Feel cold very easily
Dry patches of skin
Swelling, numbness, pain and tingling in fingers
Weakness in fingers, i.e. writing, turning taps, etc
Dry and ridged nails
Numbness, pins and needles, pain in hands, wrists, feet and ankles -especially bad when sleeping
Swollen and red "sausage" toes
Disturbed sleep
Frequent colds
During Flare Up:
Itchy, flakey lips
Lip sores and mouth ulcers
Swollen face and swollen, hard glands
Finger tips go bright red and hot, but the rest of my hands will be pale and cold
Grinding sensation when lifting toes - like pulling an elastic band
Pain in the arch of feet when walking
Night sweats
One of my GPs thought RA or Psiorius Arthritus. Another thought RA or Fibromyaligia, but my bloods came back clear when tested. My dentist has put me on a toothpaste for dry mouths. He also gave me a steroid cream to help my lip sores as he thought I had a staph infection (never had anything like that before). My optician told me that my tear ducts weren't producing enough and I now use eye drops daily. The floaters in my vision started after my last flare up, my GP advised me not to wait until my Rheumatologist App before seeing or doing anything else.
Does this resonant with anyone? Has anyone experienced similar symptoms to this?
I will be going to the doctors tomorrow to ask for stronger pain killers. The lack of sleep and pain has made this week a bit of a struggle! I just wish I could have an answer as to what is wrong, so that I could start finding a way to control it. Would you recommend that I ask my GP for a particular pain killer?
Sorry this post is so long - I just feel a bit unsure of what to do! Thanks for reading.
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BlackNov
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Kindly get eyes checked ASAP, BlackNov, especially if experiencing Floaters as noted in ‘orange section’ of page: nhs.uk/conditions/floaters-...
The list of symptoms you’ve kindly noted overlap with a number of Inflammatory Arthritis/ Autoimmune illnesses as noted here: healthunlocked.com/nras/pos...
Continue working with your physicians/ rheumatologist 👩⚕️👨⚕️ to assess likely condition(s) & course of action going forward.
Thank you Kai - I really appreciate it. It just feels a bit daunting at the moment, because I don't really know what is wrong, but that I just don't feel very well. It was kind of you to take the the time to attach those links as well -I will have a look through these, when I am not at work
For supplemental research, just a few of the myriad possibilities/ ‘flavours’ of autoimmunity (& simultaneous life/ bodily changes) & its tendency to ‘travel in packs’ (like wolves):
It is indeed daunting, as we (& often our beloved medics 👩⚕️👨⚕️ ) don’t know what’s wrong with us nor can they clearly, unequivocally diagnose us promptly. [Disease(s) ebb ‘n flow & mutate 🧛🏻♀️ 🧛🏽♂️ 🧟♀️ over time — a ‘moving target’ { { 🎯} } so can be extremely difficult/ impossible to ‘nail down’ 🕳🔨 definitively.]
Merely opinion: avoid getting ‘wrapped around the axel’ (obsessing) about precisely nailing an ‘exact’ diagnosis. Leave that to your physicians 👩⚕️👨⚕️ to ‘spin their wheels’ ((⚙️⚙️)) around ( healthunlocked.com/nras/pos... ). Your best efforts are spent: keeping focus — laser focus 👁 👁 — on optimal nutrient intake ( healthunlocked.com/nras/pos... ), de-stressing 🧖♀️ , deep body 🧘♀️ & mind relaxation 💆♀️ ( healthunlocked.com/nras/pos.... ), & gentle movement 🚶♀️/ exercise 🏊♀️ ( healthunlocked.com/nras/pos... ) . . .
In other words, ‘take as good a care of yourself as you possibly can’. 😌 🙏 💗
The better conditions/ circumstances you can create of loving support 💑👨❤️👨 for your body 🚺 / mind 🧠, the better you can move forward toward improving/ healing — halting 🛑 disease progression.
Enlist the help of trusted loved ones 👨👩👧👦👨👩👦👦 if/when ‘the going gets tough’ 🚷 ♿️ . (Ask for help 🗣💬 when you need it.)
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Aside, have learned via experience 😖🔨 (‘school of hard knocks’) that once you start improving overall life situation, overall health, the multi-symptoms/ multi-illnesses gradually subside/ dissipate — over time ⏳⌛️. 👍👍
[No clear cut ‘dividing lines’ 🤒 | 🤢 | 🤮 | 😷 | 😵 amongst the various ailments — never mind the evolution of each disease itself 😳 🤯 . Too much overlap/ blurring of lines 🔀 amongst ‘n between them, so needn’t waste time obsessively ‘splitting hairs’ 💇♀️ .]
Merely opinion: Take overall, ‘big picture’ 🖼 , ‘bird’s eye’ 🐤 view (Wholistic view) — avoid zooming 🔭 in on (obsessing over, wasting time over) hair-splitting minutiae 🔬 (Reductionist view). Focus on doing ‘the big things’ right & notice improvements along the way. 👍👍
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Info merely readily available to be nibbled along the way in free time when away from work. Kindly be reassured there’s abundant realistic hope, BlackNov. 😌 🙏 🍀 🌺 🌞
It sounds like you may have Sjogren's Syndrome. I would ask if you can take a cancellation appt if one should come up so you can see your rheumy a bit sooner, as if it is, you need to get onto some meds as soon as poss. You may have several things going on there but a lot of your symptoms, to me, point towards Sjogren's though I am no expert! Rheumatoid Arthritis also gives dry mouth and eyes (I speak from experience!) as well as many of your other symptoms, but there are other forms of arthritis also, and it is important to get treatment sooner rather than later. Re pain relief - I have been advised to take regular doses of Paracetamol as it is kinder to the stomach than NSAIDs, and believe it or not, taken regularly at approx 5-6 hour intervals (not exceeding dose on package) actually works quite well to keep the pain down. Worth a try until you can see your GP. (I was started on Naproxen before my diagnosis but if you get prescribed that make sure they give you a tummy protector such as Lansoprazole as well.) Good luck and I hope you can get seen sooner rather than later and get some proper answers.
Thank you for responding SnooW. I hadn't thought to ask for a cancellation appointment so that is something I will definitely do! Thank you for giving me your opinion. I wasn't sure if the eye and mouth problems were due to a form of Arthritus or whether there could be something else. I was put on Naproxen, Paracetamol and Codeine (I think it is spelt that way). I have acid reflux and have found that the tablets are causing quite a few problems, so I might need to ask for Lansoprazole when I see my GP. May I ask how long it took for you to be diagnosed with RA? Do you take eye drops for your eyes? Thank you for taking the time to respond.
It's certainly a way of maybe getting seen sooner especially if you are able to do short notice. It definitely sounds like you need to be asking for Lansoprazole. You have to take it half hour to hour before any food or meds, so I keep mine by the bedside and take it as soon as I get out of bed. I had first real signs of RA in Aug 2015, first doc told me it was a virus and to go back in 3 weeks if no better. I didn't believe her, so the next week saw a different doc who recognised the problem and fast tracked me to rheumatology where I had bloods and hand/wrist scan done around Nov/Dec time. At next appt at end of Jan 2016 I was finally told my diagnosis and put onto my first DMARD, Methotrexate. There are various eye drops for dry eyes, some over the counter and some prescription. I like to try and continue to wear my contact lenses as long as poss each day, so use over the counter drops especially for use with those. However, they are not as comforting as proper eye drops but I hate wearing my glasses!!! (Vain!) Re dry mouth, some meds can cause that, (as well as RA and Sjogren's), so might be worth looking at the leaflets with your Naproxen, Paracetamol and Codeine to see if they can cause that problem. I use a mouth spray and lozenges to try and keep my mouth wet. A dry mouth can cause dental probs and my dentist has prescribed special high fluoride toothpaste now. I've lousy teeth anyway so a bit like shutting stable door after horse has bolted but don't want them to get worse!
Poor you. Miserable waiting isn't it. What you describe could be any number of autoimmune issues. I have psoriatic arthritis and have experienced most of those issues...though not dry mouth.
Often in seronegative arthritis things don't show up in the blood until maybe later.
Hello Nettac, thank you for reading my post. It really is miserable waiting! It is nice to feel like someone else understands and I don't want to be a moan but this week has been testing me! It seems that the symptoms really over lap between them all. Thank you for explaining about the bloods - when my test came back clear, I started to wonder if I was crazy! Best wishes to you.
Yes, you do begin to think your going quite mad. However, don't be patronised or put off. Unfortunately seronegative arthritis is often hard to get diagnosed. The fact that you have some swellings and dodgy nails should ring alarm bells. I say should, because all the toenails on my right foot fell off, both achilles tendons were swollen, and I was so stiff I couldn't get up from a chair, and I still had to beg to be referred to rheumatology. Sounds like you're half way there though
Blimey you poor thing, that is a list of symptoms, no wonder you re daunted. Can't give any better advice than others but my GPs got emergency rheumatology within 2 weeks when joints flared after 6 months of random symptoms; hope you get in sooner x
Thank you for responding Kerena. I will ask my GP tomorrow. I didnt know until today that an emergency app could be made for rheumatology. I was put off going back to them as it took 3 GP visits before I was referred. On my 1st visit they thought I was too young to have any issues with my joints. I had to take in a family history list which includes RA, degenerative disk disease, fibromyalgia, Rauynolds, etc. My clear blood results didnt help either! On my last visit, my GP said he wasn't a specialist (which I totally understand) and that pain relief would be all he could offer. Fingers crossed tomorrow goes well. Thank you 😊
Really good luck tomorrow. I might have been lucky as positive. Always feel really sorry for negative people on here as it seems to take age and no less severe symptoms.
Difficult time for you. Wonderful helpful advice given. All I can say is it takes time, which is so difficult. I hope you get seen very soon. People on here understand and care.
The advice that people have given me here has been really helpful and also lovely to hear. I have never posted before, but hoped someone would understand 😊 really glad I did. And I guess I need to learn to work on my patience! Not my strongest suit! 😂
I just wanted to say thank you to everyone who responded. I certainly feel more hopeful than yesterday 😊 and will take some time to take on board the advice. It's nice to know that the symptoms sound like it is a rheumatologist who can help me. And that its not the end of the world-whatever it is that is going on. All I can say is thanks everyone 👍☺
I understand the patience remark as that and pacing have been, and remain very challenging. Reading what others say makes me realise im not on my own and that helps and really did at the begining. I signed up about 6 to 7 months after my diagnosis and as said been a good move. Takd care
Hi blackNov sounds very harsh but in regards to your eyes get checked ASAP . Sounds like you have a lot going on .
You need to go to your doctor and tell your doctor everything you have mentioned here and make sure the doc listens especially cause you are so young as well , might not take you as serious as some1 who’s older . If you think you will not remember everything once you are there , write it all down on paper beforehand. You really need to speak with your doctor and make sure they listen . Good luck with everything, you will be ok .
Thank you for your kind wishes Tattoo72 and for taking the time to respond. I will see an optician on Sunday and I spoke to my Dr today so I feel a bit better. I know what you mean about forgetting- after my app I forgot to ask for more painkillers! 🙈 it's just so hard to remember everything!
Don't be afraid to ask your GP to ask for an urgent appointment with the rheumatologist. If your symptoms are severe, which they sound, then you have a clinical need to be seen.
Thanks Mmrr. I did ask today but not sure it will happen! But hopefully I will be put on the cancellation list. Hope all is well with you 😊
Don’t panic! You definitely have an infection. Was your c-reactive protein level checked as part of your blood panel? It will determine your inflammation level. Have you been bitten by a tick? Have you heard about Sjogren-syndrome? Until you can get in to see your primary care physician, I suggest a modification in diet may be in order. Such as the Mediterranean diet or paleo. As someone with O positive blood type, I’m supposed to avoid wheat, processed sugar and dairy because it causes joint pain. On the positive side, a change in diet and a regiment of antibiotics may make you feel 100 percent. I’m not a doctor, but knowledge is power and I’m an advocate for natural remedies, which has improved my life. Please get a full blood panel soon. You will find a lot of love and support on this website. Stay positive.
Hello Smitha1521, thank you for your message. I appreciate you taking the time to give me advice. I don't know what was tested-they just said it was clear. Should I ask if my c-reaction was tested? Pretty sure I haven't been bitten by a tick. My GP mentioned sjogrens today. Truthfully I know nothing about the paleo diet but I will have a look. I have just been trying to eat more vegetables etc and drink a bit less alcohol! 😃 Although usually a glass of wine does make me feel more positive! 😂
I totally understand about drinking a glass of wine, or two Just because you have an elevated ra factor, doesn’t necessarily mean you have rheumatoid arthritis. A high level of C reactive proteins factors in also. The Paleo diet is referred to as the cave man diet. Stay as close to the natural state of a food item as possible. If you can afford organic meats, buy those instead of hormone containing meats. Do you take supplements? I recommend krill oil, tumeric, astaxanthin, and bosweila. If you smoke, quit. You’re too young to be having such awful symptoms. I’m old enough to be your mother so please excuse my boldness. Take care.
Hello! So I went to see my GP. I asked if there was a cancellation or emergency list, and he said that urgent appointments were for emergencies. As I can walk and go to work that it wasn't an emergency. He said that they were aware of my symptoms and reminded me that my bloods were clear. He said that if he gave those apps to people like me there would be none for the people that really needed them. I understand but it made me feel so bad/embarassed! ☹ I said that I was struggling. He saw my swollen hands. I showed him pics of my lip sores and red toes. Strangely my red cheek rash decided to flare up during the app. He did soften a little towards the end. He told me to see my optician re floaters, so I have an app for Sunday. He said he would see if I could be put on a cancellation list and gave me omeprazole for my stomach. So hopefully that will help 😊 I just need to be patient! This app did remind me why I try to avoid going to the doctors but I am glad that I went. Thanks for the advice everyone. 😁
Thank you for your reply Luisa1987 -I have had a read and some of the symptoms really do match what I am experiencing. Strangely the doctors never mentioned Lupus as a possible condition. Guess I will just need to wait and see!
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It just feels a bit daunting at the moment, because I don't really know what is wrong, but that I just don't feel very well. It was kind of you to take the the time to attach those links as well -I will have a look through these, when I am not at work 
Advice after preliminary diagnosis of probable RA
Newly diagnosed...RA and possible PMR
Newly diagnosed with RA - hopeful and happy!
Advice on seropositive RA for my 12 year old daughter, really worried.
