I made a mistake by looking on the internet cos of some of my symptoms to check if they were connected such as vertigo a recently new symptom. I found a website and I have about 90% of symptoms even rare ones it says.
I know this wasn’t a wise move but I know my body. I’ve been complaining of some of these symptoms for a years now. But I’ve so many new ones and they’ve all become so aggressive over the last 3-6 months so I’m scared how bad I am and what this could mean for me especially with my age, lack of diagnosis / treatment.
I made a list of my symptoms:
Fatigue
Vertigo
Tendonitis
Neck pain
Migraines
Scalp sensitivity
Eye pain / blurred
Jaw cracking / pain
Neck pain
Bursitis - both shoulders, elbow, wrist and both hips
I know it’s not fibromyalgia as I have bursitis in several joints inflammation in my Achilles heel and calcification and have evidence of these, so something is causing them and my other symptoms.
I plan to see my GP when she’s back in Tuesday as I’ve now done a great job of petrifying myself 🙈
I saw about the privacy but I use the app so there isn’t anyway to restrict my posts that I’m aware of I’ve tried to check
I’ve been under rheumatology for over two years. It’s been a process of elimination and he suggested AS based on all my symptoms. That’s why I’m having an mri of my spine and pelvis and genetic test done
Pretty horrible isn’t it! I think knowledge is power and has helped me before get the treatment I’ve needed. Today just scared the living daylights out of me. So hasn’t helped my anxiety. I hope we’re both feeling better soon 😊
Me too still scared not knowing. The only thing I’ve learned is people really do care. It’s a good thing you have looked online as our docs aren’t gods and they see loads of people and cannot give us the time or information we need. I know my own body and I know it’s feeling really odd, I’ve lay In bed scared spent weeks being a mess. I’ve done exactly the same but read as much as I can about the human body to make it well, from trying to eat the right foods to meditation, and despite some days feeling ok by doing what I’ve learned it’s still worrying and most of all don’t look for the negatives. Your alive and can control your destiny go back to basics eat well think well xxx
Unfortunately that’s what I have been doing especially this past 12 months due to my other illness. I got so desperate with it all I went gluten free, supplement vitamins I’m deficient in, was going to the gym until May then fatigue really kicked in again and the pain such as in my Achilles heel so thought I’d better rest, I make fresh smoothies, eat low carb, meditate and do hypnosis. And I still find I’m here. But don’t get me wrong it does all help. So if you haven’t already stay focused on helping yourself as much as you can.
One thing I can’t control is stress no matter how hard I try and keep my life simple, outside influences even family affect me. No matter how much I say stress makes me ill no one listens. I wish I could live alone on a dessert island! 😂
And if your feeling scared too I’m always here anytime x
Hi, have you got your vit D3 level tested? Lack of this is a precursor to pain, fatigue and depression. There is an inverse relationship between this vitamin and Auto Immune Disorders. While this vitamin will not turn the clock back, we surely get the benefit of being free from pain. I maintain a level between 50 and 70. So my pain has certainly become almost nonexistent. I do feel more cheerful, inspite of RA and ITP. Hope this helps, dear.
I’ve just had bloods done today to check my vitamin and iron levels but I do supplement well. But stopped two weeks ago so I can see how low my B12 is in case I can get injections. If not I’ll start taking mine again and get a injection privately
The internet is great for learning stuff, bit also completely awful as quite a bit of what you pull up is unreliable, or it tells you the absolute worst case not the best case. The site you looked it American, and I find that American sites can be the most alarmist.
These diseases are scary, any lifelong chronic condition is. But, and it's a very big but, for most people they are completely treatable and manageable. You've had a rotten time over the last couple of years not being diagnosed, but once you are diagnosed and can get settled on a treatment things will probably change dramatically for the better. Chances are that you'll look back in 18 months time and wonder why you were so scared. I really couldn't believe how much I improved once treatment started to work.
The other thing to hold in your head is that forums like this aren't representative. They usually have more active members who are having problems, or have a disease that is particularly difficult to manage. The people who are doing well don't post (or not very often) as they're off living their lives...
You're doing absolutely the right thing trying to concentrate on looking after yourself. Eat well, sleep well, try to do a bit of exercise that doesn't involve your achilles, and if your family are causing you stress basically tell them to go hang for a while. Your priority is you.
I hope you have an appointment with a specialist soon to move forward from diagnosis to treatment....
I’m actually sat in my room and depressed myself from my daughter. I’m taking some much needed time out and not touching the housework if she’s not!
I’m back on the 8th January so not long and ill know exactly what’s going on.
You seem knowledgeable so can I ask is it save to go ice skating? I’ve been invited but physically I don’t think I could as my balance and energy levels are poor but wondered out of curiosity. Do I have to be careful in relation to my spine?
I can't really advise as it so depends on the condition of your spine. Can you skate? And would your friends help you, ie hold your hands to make sure you don't lose your balance? If you are an absolute beginner, and don't think people would help enough then perhaps best to watch from the side and cheer others on.
Tbh I don’t even know why I asked. I’ve struggle walking with my balance feeling like I could pass out just round ikea today 😂
I don’t know the condition of my spine but know I’m in pain. I think we just want to act normal and do normal things with our friends. But with my fatigue as well it would be pretty impossible. I’ve said I’ll go and watch with a drink then I don’t miss out x
Morning Bev, it's a good and bad thing, the Internet. Good for research and help. Bad for worst case scenarios and misinformation. I like you had been looking at everything but have decided is to stay on the trusted UK sites and listen to your doctors. They are human and can make mistakes so if you disagree or are not sure about something say so.
I'm just starting my 3rd week of Sulphasalazine and no improvement at all. In fact the last 3 days have been awful with pain and feeling down.
The thing I'm holding onto is that in a few months time the drug should be working and hopefully I'll have some normality back.
If it doesn't start to ease off soon I might have to ask for the steroid bum injections...
Keep positive and hope your mri and rheumatologist appointment happen soon for you.
Is this your first lot of medication? Have you just been diagnosed?
My consultant has said he’ll inject my bum when I go back on the 8th. He said it will give me a lot of relief. Why don’t you ask fir it now? I’m sure you don’t have to wait if I can get it?
I know there’s many different medication available. Why was Sulphasalazine chosen? Is it a process of trial and see what works?
There's a recommended pathway about the order to try drugs - the broad idea is for people with early arthritis to try to control the disease with the lowest dose of the mildest drugs. If you have a more obviously aggressive disease then it can be recommended that it is hot hard with drugs from the start, and thenyiu taper off later if all's workimg well.
I think they’ll start quite string with the drugs as I’ve such aggressive symptoms. I think that’s why I’m scared. What are the side affects like? I’d rather prepare myself x
I started on triple therapy, Methotrexate, sulphasalazine and hydroxychloroquine. And once I'd got used to them I had no side effects to speak of, and they took me inot remission.
Hydroxyl worked for a short time but then had no effect so I’ve come off them. I wanted stronger but they said it wasn’t possible. It’s been a long journey but think I’m getting there now with my new consultant
Hi, sounds like you need to have a long chat with your GP say take 2No sessions one after the other.
Some of your problems may need drugs that you cannot buy over the counter, some you can so you make a start on your own, talk to the Pharmacist at your local chemist he shoud be able to point you in the right direction for over the counter drugs.
My GP’s have been great. I’m not sure there’s much else they can prescribe me until I see my rheumy.
I have lots of options for pain relief already so find gabapentin helps a lot and I’ve now slow release tramadol.
I’m starting physio which I arranged. I’m thinking of getting physio in the pool so the warmth can relax my muscles as they’ve said I’ve a lot of muscle weakness.
But my vertigo is really bad and I’m finding the medication isn’t really working.
But I do think I should speak to my GP for reassurance
I didn't read all of the responses, but has your doctor explored Polymyalgia Rheumatica (PMR) and/or Giant Cell Arteritis (GCA) as causes of the symptoms named? I have PMR and have almost all of the symptoms you named. GCA can cause very bad headaches, eye pain and jaw issues. I've had some mild issues with eyes and jaw at different times, but so far have not developed GCA. I take prednisone and have for about 4 years now. There is a PMR/GCA group on this site. Anyway...I may be repeating a bunch of information you have already seen. Hope you get some help and a diagnosis soon.
He says I’m too young when I raised it. I recently thought it was PMR but he feels it’s AS as I have close connections with psoriasis and tbh all my symptoms are text book now I’ve checked.
Thankyou , I will ask about it further . So many other health issues and doctors say they can only deal with one thing at a time. It's even more scary when your 66 yrs and live on your own..
Aww bless you I hope you’ve got some friends or family nearby.
I’m on my own and at the moment my daughter is no support and being horrible to me. It’s unlike her but she’s obviously struggling with me being sick. But it last last thing I need as I need to avoid stress. Least you don’t have that and it’s your home and safe place to relax.
My doctors are lovely I go with about 4 things every time haha but they’re used to me now. You take care and don’t be afraid to ask for help from your doctors. Be polite and honest but push for what you any. They shouldn’t refuse you x
So before you get diagnosed with meds, have you tried any of the following anti-inflammatories Black seed oil, curcumin ( with pepper), bicarbonate of soda (don't take with aspirin or calcium (i.e. cheese) , krill oil.
Also as Christmas is coming up I would suggest a present of a Cerascreen blood test. If a food intolerance is exacerbating your condition then cutting out that food can have a measured effect on your inflammation. Worked for me at least. If not see if you can cut out wheat - see if that helps. Also maybe A1 milk - you can get A2 milk.
I’ve been gluten free since February. I went grain free for 3 months then reintroduced and seemed ok. I’m on a low carb diet. I have hashimotos so looked after my diet to help.
I’m not starting anything new until I’ve had my mri then come January I’ll go back to grain free and try an elimination diet again. Avoiding all foods that trigger inflammation.
I’m going to start making almond milk and get vegan butter / cheese. Diet is key for inflammation.
Yes I agree with you both about cutting things out of your diet, it's just that I haven't got the patience to do it properly. I am having terrible pains in my tummy due to the Meds I think, having a hiatus hernia doesn't help either. Yes Thankyou for being kind, I do have friends and some family near by. Although my daughter and son are quite a journey away we are always in touch... Oh dear, wish I was out of pain, going to Slimmers world to lose a few stone, I can't see it working, I've lost weight this week because I've not touched any sweet stuff,, I am 13 stone, too much....
Are you gluten free and low carb? I think fresh fruit vegetable meat and fish is the key. Have you tried bone broth it can really help your tummy.
I’m aiming to get as much injected as I can rather than pills as I struggle tolerating medication. I’m already on enough pills so don’t need more. So I hope my rheumy will work with me on that.
You have this forum for support so your not alone. I’m lucky I have an MS centre nearby to me that offers services fir those with long term chronic illnesses such a MS. It’s a god send. Where do you live? Do you have anything similar nearby to you x
Thank you I’ve been under rheumatology over two years and seen 5 different consultants. They say I’m a complex case haha typical me!
Poor you! You have so much going on. My symptoms seem to be text book for AS but I think this next mri will shed some light as to what’s going on. My previous scans have focused on my muscles not bones and ligaments etc due to my myositis. But I feel like I’m getting there now with my new specialist x
Thankyou, I will give bone broth a try, I take it you just boil the bones !!! I did go to the doctor again and I am having blood tests on Friday . Gosh our lists just seem endless don't they and ongoing ...
You need grass fed bones from a cow or chicken. Roast for an hour it’ll release the goodness.
I then use a slow cooker. Put in the bones a whole peeled onion and two carrots with Himalayan salt and pepper and a dash of apple cider vinegar. Slow cook for about 4-6 hours. Some do it overnight but I find it’s too strong in flavour then.
After it’s been simmered allow to cool a little to then drain. Put the drained liquid into a jug or container and put in the fridge overnight.
The next day the fat will be solid on the top which can be easily removed and you have you bone broth.
Besides buying a good quality grass fed bone broth you could get an organic stick which would still work
Thankyou for the recipe , I bet it's full of goodness, How can we guarantee that the animals have been fed a healthy diet and solely grass fed. If they are not, then maybe the boiled bones broth will still be wholesome.
My consultant banned me from all forums as like you I was in this mode. Most people who are doing so well do not post. Reading negative stuff only puts us under more stress that our conditions thrive on making things worse. Try and focus on how can I fix what I am experiencing right now. That could be more rest, more meds, more supplements, more veggies/fruit, more water, more family time, more exercise and so on. Take a deep breath and take things one day/step at a time. Wishing you well, with you all the way 🧘♂️Hessie
Thanks tried and am doing all of that. I’m limited in what painkillers I can take and that work but now I’m over the initial shock I’m doing ok.
My way of coping is to prepare myself but I forget it can be scary at first finding out what we could be dealing with. I’m back smiling now and feeling more positive. Until I know the mri results there’s nothing more I can do x
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Scared!
Scared about starting methotrexate
Scared to take a biologic
First Rheumatology appointment in the morning :/ scared!!
