I was just wondering does anyone experience bone pain? I don’t mean pain in the joints, I have that...a lot 🙈. I mean actual painful bones? My shins and my arms particularly. And sometimes my ribs. And also, dizziness, I will just be sat there or laying in bed and I feel so dizzy, like the room is spinning, like im drunk? For no reason. It’s not pleasant. And also pain in the right upper abdomen, slightly under the ribs. It’s more of a discomfort rather than pain but it’s been happening now for about a month?
Thank you in advance ☺️
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Angelx01x
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I used to get a lot of bone pain in my shin's and inner thighs. Among the blood tests they tested my vit D and was found to be very low which appears to be common among those with AI diseases. I'm now on vit D tablets and after the loading dose found the pains eased and stopped.It would be a good idea to speak with your doctor if you haven't already been tested for vit D.
Also talk to them about the pain under the right rib so that they can check out if you have gallstones.
Sorry I'm not much help but letting your GP know is probably the best way to go, remember not everything is Lupus related and new symptoms need to be checked out to find the cause.
Hi Angelx01xSo sorry to hear about your pain but you describe it perfectly .
I know exactly what you mean .. my ankle bones hurt and both my elbows . It’s like it’s deep inside the bone . I take amitriplin at night which sometimes works but not in the day .
You should mention the dizziness to your gp as not heard of it when someone is sat down , more going from lying or sitting to standing . That must feel horrible , dizziness bad enough when you can blame it on something and you like what it is .
Thank you both for your replies! I never even thought of Vit D I’ll mention it and get it checked. I had my gal bladder removed already, it’s an odd discomfort/pain and I get it daily. I will mention this when I phone about the bone pain cos it’s been going on a while now. I’ll mention the dizziness too. It’s very odd!
I get it prescribed and have my prescriptions free for the next 3yrs - but after that I'll go back on the monthly payment plan for prescriptions as so expensive otherwise as have so many prescriptions... it's just over £100 a year I seem to remember..........
Hi there - I have had vertigo (or BPPV) for 30 years now... sometimes it's insane like the first time it happened... I woke up and literally screamed as the room was upside down and all sorts... makes you want to vomit. I got diagnosed with labyrinthitis and then BPPV after being sent to ENT - I do exercises to keep the crystals in my ears moving around.. and some level of yoga every day as much as I can unless totally pooped as it really helps keep your ears working better/balance etc.Here's an article I just found on it: Update on Vertigo in Autoimmune Disorders, from Diagnosis to Treatment hindawi.com/journals/jir/20...
I'd have a chat with your GP about it.. to check your bloods and to see how bad your vertigo is. There are meds for it if you have something called Menuieres (sp!) - but I think it's a case of having your ears checked by GP, seeing how bad it is and asking for referral to ENT if it's too much. They can't do much... they gave my exercises to do whilst lying down.. swbh.nhs.uk/wp-content/uplo... It does bring on the vertigo... so be prepared to scream the place down if it makes the world go upside down. You get used to it. Do it on the bed.. and have someone with you if you can. I started just by lying down on the bed and making my head go from left to right - I do that every day to keep things under control inside my ears etc. I'm sorry, it's not very nice is it!
I also have dreadful bone pain pretty much everywhere but definitely where you describe. I take paracetamol at night as I can hardly bear it sometimes, along with a ton of other stuff. I did try amitryptilline but it was like I was poisoned... no thanks! I started having massages again but frankly it was like torture... and didn't get any better even having them weekly at first... It's inflammation I feel, inflammatory arthritis.. and you can't massage that away. I find if I miss my yoga or even just stretching, things get MUCH worse. It hurts doing it, but I really find it's essential, along with v healthy diet, keeping highly hydrated - ie at least 3 litres of water a day as this definitely helps with everything... dehydration affects your whole system. simple but true. Lupus UK website has tons of info on all things Lupus - here is the link to them all. lupusuk.org.uk/publications/ There is one on bone health... but it's very common to have this, sadly.
Thank you so much for your response and sharing your symptoms and advice on what helps your really appreciate it! And the links too!! Would it be best speaking to my rheumy or GP about it all do you think? The last time I spoke to my GP about the headaches I was experiencing and blood results he told me it was all above his pay-grade 🙈. I don’t want to hound them but I’m struggling more each day and don’t want to just put up with it if there is something I could be doing to help I’m only in my 30s! not necessarily meds but some form of exercises..for my joints too as I have a very clicky and grinding and painful knee! I did wonder if the bone pain was more to do with inflammation? I’ve heard of the exercises for vertigo. I’ve had labrynthitis b4 but I’m not diagnosed with vertigo. My rheumatologist knows I experience dizziness but maybe I need to explain it a bit more rather than just feeling dizzy. I’ll have to increase the amount of water I drink, I’m a bit rubbish at that!
Sounds like best to speak to your rheumatologist for sure... are you due to see them soon? If you don't understand your bloods, and your have headaches and aren't sure what the hell it all means you must ask for an update with your rheumy if you're struggling... or at least try. And read up on e everything before you go eh? so you're armed with info and know what to ask etc... Again, Lupus UK has great info on the site on how to prepare for your appointments. Btw, your GP sounds pretty awful (obviously)... crikey :(... I mean, he's right... but not very nice to just leave you floundering. Def time for a rheumy update.. just call the secretary and ask.. might go nowhere but if you say you're really struggling and don't know what's going on with your bloods... stress is the last thing you need.
Do you take high quality DHA and EPA oils? Great for lupus and for joints. But do read up the stuff on Lupus UK... really helpful
Omega-3 Fatty Acids in Rheumatic Diseases - A Critical Review
Extract: Many clinical trials of omega-3 fatty acids, supplied as fish oil supplements, have been carried out in rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), lupus nephritis, and osteoarthritis (OA) over the past 3 decades. This review attempts to summarize the highlights of these studies to evaluate the clinical efficacy for omega-3 fatty acids to be added alongside existing treatment regimens. A total of 20 clinical trials have been carried out in RA, of which 16 exhibited significant improvements in multiple disease clinical outcomes. Nine clinical trials have been completed in SLE and lupus nephritis, of which 6 exhibited significant improvements in 1 or more clinical outcomes. A total of 4 clinical trials have been conducted in OA, of which 3 exhibited significant improvements in at least 1 clinical parameter. Multiple mechanisms for the clinical effects of omega-3 fatty acids have been implicated, including the modulation of eicosanoid synthesis toward a more anti-inflammatory profile and suppressed production of proinflammatory cytokines. Overall, fish oil supplements appear to be a safe and effective agent that could be added to the current treatment regimens in RA. Longer-term trials with larger patient cohort sizes are warranted to establish any long-term benefits of fish oil supplements in SLE, lupus nephritis, and OA.
Summary: Consuming an omega-3 fatty acid called DHA, or docosahexaenoic acid, can stop a known trigger of lupus and potentially other autoimmune disorders, researchers have discovered.
In fact - having read all that, I must get some myself!!! My previous acupuncturist told me to start taking it... and (tut tut) I didn't.
And... please keep hydrated.... it's soooo essential for your whole body but especially your bones and joints... that was my first thought when I read your post. Helps with sleep (apparently), mood and makes your skin glow.... (er, well, it used to help a bit when I was younger ;).. Glug glug glug x
Thank you so much for all your advice and searching for info! I really appreciate it. I’ll have a good read and do a bit of research. I don’t currently take any vitamins/oils. Need to look into this too I think! I need to write down all my current symptoms ready for when I speak to my rheumatologist otherwise I’ll forget something whilst I’m there...brain fog 🙈, think I’m due to see them in may?! I know!! I couldn’t believe my GP..I was like...yeh cheers for that! Lol! Oh I will defo increase the amount of water I drink! I’m a Diet Coke kinda girl lol 😂.
Diet Coke??? 🤒😱I understand... it gives you energy.. but it's only short lived and full of caffeine and nasties that your bod will definitely not be enjoying. That's possibly the worst thing you could be drinking... yikes. Time for a big change up perhaps....... 🤞. Might be interesting to see how you feel (after the initial detoxification process which will probably mean headaches and nausea) if you dump it for lots of water even if you have to add natural type stuff to it such as 50% fruit squash without sweeteners as also nasty for your body (although I do have Stevia type stuff in my tea so who am I to say!?).. and see if anything improves. Headaches and bone pain will surely get a little better. Take photos of your symptoms too if you have any... rheumy's love that. All the best, and enough already with the advice D! 🙅♀️x
I have mentioned bone pain to my consultant before. I tend to get it in my arm and hand . I find I get it after I have been over doing things or after periods of stress (such as with work ). It will wake me at night but not painful enough to need pain killers just annoying! It will go on for weeks then suddenly stop.
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