Pain at it's highest level (2)

[Nottobad123]

Thanks so much to everyone who responded to my post 6 days ago, just having someone to hear me was a blessing on it's own. I managed to get to hospital 4 days ago and saw a doctor who was shocked that the inflammation level was very high in the blood tests they just done. 164.2, where as normal level would be 0 to 5.

I was told the uric acid level was normal.

I was given steroid paid killers injection and antibiotics via intravenous and medicine to take home.

I had more blood tests today and the inflammation level was at 40, a huge drop from 164, the seem to very pleased that the swelling had gone down considerably and not much pain just uncomfortable.

When I asked what was course of the problem, the reply was..I don't know.

I feel a bit disappointed that know what problem is but there's not much more I can do..other then take medications.

[Deeb1764]

at least the reading has come down so sounds like the steroids s kicked in and got your pain and inflammation down to coping as such.

If you have RA and autoimmune I am not sure there is a reason for why inflammation increases sometimes just a flare or weather or stress. It’s learning to manage it and hope you get to a place where flares reduce .

[Nottobad123 in reply to Deeb1764]

I will know soon if it will go back to normal, am feeling a bit light headed just to be able to stand and walk again.Am taking lots of medications that are helping me relax, but I will get back to the doctor and ask for more tests to find out if it is arthritis, and if so what type.

It's very clear by the x-rays that I have gout in the knees, I do get tremendous pains in them, and a doctor who was treating me for my shoulder injury said I had arthritis in there.

Anyway for the time being am very very grateful for the pain relief am getting from the medications, am sure I will learn to manage it as I have learned a lot from this one.

Thank you so much for your reply..🙏

[Deeb1764 in reply to Nottobad123]

I just started pain management so did an assessment this morning which was a tad cathartic at one point! When you have a lot going on I felt I needed to look at the body as a whole so not just autoimmune but lungs heart and osteoarthritis etc. it’s hard sometimes but need to keep looking for a not more medication result 🤪

[Nottobad123 in reply to Deeb1764]

I do hope the pain management will help you in every way possible. I was starting to do okay with breathing exercises and physical exercises with doing a bit of gardening, I was very happy with that, hopefully I will be able to start again soon..the lack of exercise is the worst thing for me.

[Runrig01]

if I recall you didn’t know what type of arthritis you had. Certainly the raised inflammatory markers, suggest it’s an inflammatory arthritis. I would be pushing for a referral to rheumatology, and getting put on the relevant meds. The steroids is only a short term solution unfortunately. Glad it’s easing the pain for the time being though.

[Nottobad123 in reply to Runrig01]

Am not sure what actually happened with the doctor I was seeing. The hospital doesn't have a rheumatology department, but the doctor who they booked me to see was, I think a doctor that knows something about arthritis. It's a very big private hospital that deals with everything, but it doesn't seem to have any one that is a rheumatologist. The government hospital also doesn't have.

Am going to phone the hospital tomorrow and ask the doctor if they can do any tests to find out what kind of arthritis I have, and is it in my foot..I know I have gout in the knees and arthritis in my shoulders.

The medications they given me seem to be doing wonders and am really glad for the rest they are giving me..

I will know in a few more days if it goes back to normal and if there is anything more I can do for the future.

Thank you very much for your help 🙏

[Fruitandnutcase]

I’m glad to hear things are going in the right direction - in that your pain isn’t as bad as it was even if you still have a lot of questions that need answers. It must be very frustrating to be told they don’t know what caused all of this. Hopefully someone will be able to tell you more in the near future.

[Nottobad123 in reply to Fruitandnutcase]

I would like to ask a few more questions from the doctor that's been treating me, that's probably the best one to see at this hospital, I really want a diagnosis as it's the only way forward. There's very little pain now, I still need the pain killers for it, and I can't put my foot down for very long as it's starts to swell up again very quickly. So yes I will be looking to find someone that can help me. 🙏👍

[medway-lady]

As they say medicine is a science but not an exact one. I’m glad you’ve got treatment so now at least you can look forward and get more help.

[Nottobad123 in reply to medway-lady]

I know there's something very wrong with whatever it is causing me all this pain and I really need to find the right doctors to see.I can't really put my foot down for very long without it starting to swell again, but at least the pain is now very little. 👍

[Evie3]

you must have been in agony. 😢

[Nottobad123 in reply to Evie3]

I was, I really was..it was more than enough to convince me that I'd be very happy to have the foot cut off if it stayed like that. I tried to have a little walk and water the garden today, but within 5 minutes the foot started to swell up and the toes started to hurt, not very much though..so I went back to bed..been on it all day, lucky I have a house full of people to call on so am making the best of it 👍😁

[Mrspainting48]

You are so lucky some one cared enougTo treat you.

My pain level these last two years is unbelievable.

The doc at the pain clinic over the phone.

Said imagination makes it worse

And said take 8 paracetamol a day.

I have Rheumatoid..Fibromyralgia and Lymphodema ...48 years...26 years..and 3 years respectively.

Drug intolerant for 28 years.

Though i am willing to try new drugs.

[Nottobad123 in reply to Mrspainting48]

Am very sorry for that, I couldn't imagine what life would be like if I was drags intolerance..it's also very hard to imagine what people go through unless you yourself have experienced it. I hope you can find something to help you.

[Green230461]

glad you are feeling better 😄

[Nottobad123 in reply to Green230461]

Thanks 🙏

[Vixen2]

Hi. Wow. That’s a very, very high reading. I had a massive flare last yr & my ESR was 50. I could hardly walk. I’ve had a flare in my neck & shoulder. Had gone to 17. Total agony. 164? I’d be in tears. Steroids can be fantastic. I just don’t like being on them longterm. I ended up being moon faced!! Anyway. So glad the steroids have worked. Hope your wife can cook you some more lovely meatballs & i hope your kids don’t drive u mad! Good luck.

[Nottobad123 in reply to Vixen2]

When the doctor read the test results, she was shocked and very worried, pumped me up with steroids injections and antibiotics via intravenous. It really was a frightening experience, I still don't know what the course of the problem was. Am not to bad as it is now, hopefully it will go back to being normal again soon. The kids are a blessing and my wife made me a very tasty cheesecake that is now in the fridge and I keep cutting small slices off, she going to put some fresh strawberries on it tomorrow.

Thanks for reply, it's nice to be able to talk with others who know what you're going through.

[Vixen2]

Your wife sounds lovely. It really means so much when you have family you can rely on. Especially when you’re in hospital. I go every 6 weeks for my infusion. (Been having the treatment for 30yrs). I still get nervous going there. My blood pressure goes straight up! Hospitals can be scary & lonely. So having loved ones with u can help.

Ps.

The cheesecake sounds lush. Just make sure there’s enough cake left for the strawberries!!!

[Nottobad123 in reply to Vixen2]

Yes am making sure there enough for the strawberries, she made one a few weeks ago and all the strawberries got eaten before the cheesecake come out of the oven. I'll save you a nice slice with the strawberries 👍👌😁

[Vixen2 in reply to Nottobad123]

The cheesecake sounds great. But my fav sweet treat is a salted caramel cornetto. Especially when it’s melted a bit. I often get dry mouth. (The bloody menop). So ice cream is lovely. Refreshing. But i also love coffee cake. Lovely with a cuppa! It just relaxes you. Sitting down, with a steaming hot tea/coffee & cake. I’ve been drinking mint tea recently. Meant to be quite good for you. Enjoy your strawbs (& cake).

[Nottobad123 in reply to Vixen2]

The cheesecake was absolutely delicious, cooked strawberries on some and cooked blueberries on some and some left plain, I pass the time with posting meals and things on Twitter/X , I enjoyed doing it.The dry mouth can be a horrible, especially when you need to sleep, I use ice cold sugar free drinks like coke with fresh lime juice in it and just sip a little to wash the mouth, it works pretty good, as does orange squash with ice and water.

Enjoy your mint tea..I haven't had it for ages 👍😋

[Jordie20]

Very happy to hear you have been seen too and have a bit of a management plan, I know its not a magic fix, but glad you are starting to feel a bit better

[Nottobad123 in reply to Jordie20]

Thanks, am so grateful to have the medicines we have today 🙏

[Jordie20 in reply to Nottobad123]

I couldn’t agree with you more and any progress forward is still progress right, no matter how small it seems. Hope you continue to improve

[Nottobad123 in reply to Jordie20]

Thanks..seem to be going in the right direction today 🙏👍

[happytulip]

If it's steroid responsive, and it clearly is, it'd done type of inflammatory disease or disorder. A normal uric acid should rule out gout.

[Nottobad123 in reply to happytulip]

I had 3 blood tests and i was told the uric acid level was normal. I've got quite a lot of things to catch up on, and a few more days on medications, I will ask again what there is in the way of tests to find out what happened.. I know if it starts to happen again I can get treated within the half hour, so am very glad about that..very very glad 👍👌