Become a Member: Readers Say Hi

Brynmor

We get a pretty large number of readers everyday including Guest accounts who haven't joined but visit regularly for the latest updates and information posted here on the Online Community.

We also get a large number of readers who have signed up but who have still to make a first post. These are recorded as Applicants or Applicants2 by the system.

Some of you have memberships that go back more than 10 years! 😯Just check your profile to see which membership you have.

Now, come and celebrate with us on the Online Community!

Take that first step and say Hi in the comments to this post!

• Applicant / Applicant2 users will have their post go into Moderation - your post will appear to vanish! We Approve it, the post then appears & you become full members 😀

So, Don't be shy, come and say Hi 😎

Have a question or more to say?

• Why not introduce yourself in Say Hello - it would be lovely to meet you!
• Have a question? Meet the members and get answers by posting your question in Living with Arthritis

Follow the link and click New Discussion to make your post. You will be most welcome.

Yento

Hi. Am after advice about testing positive for the Hla-b27 gene and awful ongoing pain in lower back pelvis and buttocks hips shoulders and neck.have been getting worse over the last 6.5 years.all day pain with also being unable to sleep as I wake in early hours in pain in upper back shoulders and neck .struggle to turn over in bed as feels like my back is locked up.any help advice would be great.

Shell_H

Hi @Yento - welcome to the online community!

I’m assuming you’ve been diagnosed with ankylosing spondylitis with the mention of the Hla-b27 gene? I see you have a lot of pain going from you pelvis, up your back to your shoulders and neck. This impacts your ability to sleep and you’re hoping for some advise or help.

I apologise if you already do this, but making sure you take painkillers before bed - just before or about half an hour prior - can really help when pain is affecting your sleep. Sleep is super important, as being properly rested can actually help you deal with pain better. You can check with a pharmacist what pain killers are safe to take with any medication you have - it may be worth seeing if you can take any stronger pain killers.

You could also see if heat helps, in which case an electric blanket may make sleep easier, or a hot shower. Maybe seeing if having a cushion between your legs helps your posture at night, or other cushions would help. I’ve put a couple of links below - do have a look at the “Living with ankylosing spondylitis” section as this has a lot of information which may help.

https://www.versusarthritis.org/about-arthritis/conditions/ankylosing-spondylitis/

https://www.versusarthritis.org/about-arthritis/managing-symptoms/sleep/

Do have a look around the community. We have a large section on living with arthritis where a lot of ideas get shared. I you have any questions or just want to share something, please do. We all have some sort of arthritis, and it’s really nice to be able to talk to people who have some kind of understanding.

Lovely to meet you!

Shell

Cheekyj

Hi i,m 59 and worried about becoming immobile due to arthritus

Shell_H

Hi @Cheekyj - welcome to the online community!

I see you’ve got arthritis and your long term mobility prospects are worrying you.

It’s difficult to give proper information without know what kind of arthritis you have, but there are a number of things you can do to help retain your mobility Gentle exercise and stretching - especially of affected joints - can make a huge difference in long term mobility and pain. Strengthening your muscles around your joints can help take some of the strain off your bones and improve your quality of life. You need to be careful and exercise within your limits - do not eep going if it hurts, stop and rest, and then work your way up to that point carefully. urging yourself with exercise when you have arthritis can be counterproductive. Versus Arthritis has a number of exercises designed for people with arthritis which may be worth looking at.

Also seeing if you need to lose weight (if applicable to you) can make a difference. I personally struggle with this, but I know if I lot weight it would reduce the strain on my knees and ankles and i’s something I do work on (however successfully). There’s also pain management, adaptions you can make for your home, ensuring you get appropriate sleep and many other things which can affect you long term. Not least of which is keeping in touch with your doctors and ensuring you get appropriate medication for your situation.

I’ve put some links which I hope will be helpful below.

https://community.versusarthritis.org/discussion/57209/exercise-courses-by-versus-arthritis

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

• Booklet on gadgets and adaptions for your home

Do have a look around the rest of our community, and maybe post some more information in our Living with Arthritis section so our community members can share more specific ideas.

Lovely to meet you!

Shell

Izzypeach

Hi I'm Lorna,

I am now on the hip list and have major surgery anxiety. I wanted to join a community of people going through the same thing and hopefully bring some calm.

Tom

Welcome to the forum, @Izzypeach and a Happy Month to you.

I see that you have just got a place for a hip replacement but have developed anxiety over undergoing the procedure.

Here is a link to information on our website about the operation and one for preparing for surgery.

https://www.versusarthritis.org/about-arthritis/treatments/surgery/hip-replacement-surgery/

https://www.versusarthritis.org/about-arthritis/your-experiences/hints-and-tips/surgery-hints-and-tips/

There are many threads on the forum that deal with the persona experiences of those who have had the surgery.

Good luck and let us know how you get on.

Tom, Moderator.

TerryB

After suffering from progressive OA for 18 months I decided to go for Regenerative Surgery last week. I have been put on the NHS waiting list for hip replacement which cd mean a long wait so decided to use a private hospital which cd also treat my other hip and two shoulders. They use fat cells from your own body ( abdomen) and inject into the joint. There is debate among orthopaedic doctors about its long term effectiveness and its not approved by the NHS but I was ready to try it

Tom

Welcome to the forum, @TerryB .

I see that you have had degenerative OA for some 18 months, you have now secure a place on the NHS waiting list for a hip replacement. You have decided in the meantime to have private treatment involving the injection of fat cells into the effected joints.

I have found this information on our website when searching “fat injections”.

https://www.versusarthritis.org/about-arthritis/treatments/drugs/hyaluronan-injections/

I note that there are some doctors who will still prescribe this treatment despite a lack of NICE approval.

You may fond that other forum members have relevant experiences and I am sure that your experience will be of interest, so please keep posting.

Tom, Moderator.

Matilda1

Hi

Tom

Welcome to the forum, @Matilda1 . You say very little about your experience with arthritis, so here is a link to an introductory article. I apologise if it seems basic compared with your understanding.

https://www.versusarthritis.org/about-arthritis/conditions/arthritis/

If you care to post again giving more information, then I a sure that it will prompt a response from members.

Good luck,

Tom, Moderator.

LouH00

Hi! I was diagnosed with RA a month ago. As you can imagine I have plenty questions as I start this new unexpected journey. At the moment I’m trying to figure out if there are any patterns to my good and bad days but having no luck so far. I’m particularly interested to know if there are good apps for tracking or best to just keep a diary to monitor.

Tom

Good morning @LouH00 and welcome to the forum. I see that you post one month after a diagnosis of RA. I’d go for the paper and pencil option; the battery doesn’t run out and if you drop it in the bath its not the end of your record.

Here are some links to information on our website:

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

https://www.versusarthritis.org/about-arthritis/young-people/managing-your-symptoms/

Good luck, keep posting to let us know how you get on.

Tom, Moderator.

Matilda1

Hello, I am been a member of ARC/VERSUS ARTHRITIS since I developed RA 40years ago. Can any one help me now regarding my GP prescribing Gabapentin for me after using Amitriptyline at night for nearly 30 years that became now totally ineffective in controlling my fibromyalgia. I would appreciate what dosages people are taking and any side effect that have been suffered or any information that anyone is willing to share.

Many Thanks.

biffo23

Hi there,

A couple of months back I experienced pain walking downstairs from my knees. I didn’t pay much attention to it at the time. I thought something had not clicked in knee joint properly. Eventually the pain disappeared.

Then on returning home from a cruise and using airports I thought my knee was playing up again and my calf was swollen. The pain appeared to move from my knee to my hip and then lower calf on a daily basis. Eventually the pain rested in my hip and became excruciatingly painful.

I managed to get an appointment with my GP who ruled out a blood clot but thought arthritis and sent me for X-rays

Over a month after my first meeting with GP he has texted me to say “X-ray results shows wear and tear arthritis (Osteoarthritis).

That was it. No advice re treatment / exercise. What I should or shouldn’t do. What pain I am in now? Is this normal?

Luckily my pain has subsided.Over the last month I have used Voltarol, ice packs and paracetamol and the pain in my hip has almost disappeared. So I assume I had an Arthritic attack. Will these occur regularly? How can you plan vacations/ trips not knowing if another attack might happen. Will these attacks become longer?

Male 70 yrs of age. Fairly active

Tom

Welcome to the forum @biffo23 . You are an active 70yr old who has just received from your GP a diagnosis of osteoarthritis, but no treatment suggestions. The principle joint effected is the hip.

Here is some information on the condition:

https://www.versusarthritis.org/about-arthritis/conditions/osteoarthritis-oa-of-the-hip/

The key is to keep doing as much as you feel able. This is a common theme from posts by other forum members. Here is a link to exercise advice:

As for the future, assume you can rather than fear you can’t.

Let us know how you get on.

Tom, Moderator,

oregon80

Hi,

My daughter is 15 and has been diagnosed with JIA. Generally figuring out meds, side effects that she is having from the meds and everything else that I can do to help ease her pain and help her navigate this rollercoaster ride!

Gemma

Tom

Welcome to the forum, @oregon80

I see that your 15yr old daughter has been given a diagnosis of JIA. Here is information from our website about this condition.

https://www.versusarthritis.org/about-arthritis/conditions/juvenile-idiopathic-arthritis/

Here is a story from someone now 32, who was diagnosed at 14.

https://www.versusarthritis.org/news/2020/october/living-in-pain-my-life-with-jia/

In the first link there is a further link to the part of the VA site specifically for young persons.

We wish you and your daughter the very best, Please let us know how you get on.

Tom, Moderator,

YvonneH

Hi @oregon80

I've got a link for you to a PDF which says a little about the events Versus Arthritis organises for young people

Versus Arthritis virtual events for young people leaflet

There is a link there to the email address for the young peoples team.

Take care

Yvonne

jae67

Hi just been diagnosed with Rheumatoid arthritis and am about to start on Methotrexate. I already take Warfarin and I understand my INR might be affected. Does anyone have any experience of taking both these meds?

Many thanks

Judith

Poppyjane

Hello @jae67 welcome to the online community

You have recently been diagnosed with RA and are about to start on Methotrexate. You take Warfarin and are wondering if the combination of drugs will affect your INR - International Normalised Ratio.

Whilst the Moderators team is not medically qualified to answer your question it may well be that some of our members take both drugs and will be able to offer you some advice and support from their personal experience.

Meanwhile I attach some links which I hope you will find helpful

https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

https://www.versusarthritis.org/news/2020/november/ask-the-expert-newly-diagnosed-with-arthritis/

I hope you get a chance to browse round the community, there is a great variety of discussions and activities and we look forward to you joining us again soon.

Take care

Poppyjane

Wappy_Lady

Hi,

I had had arthritis since I was a teenager, but diagnosis took until I was in my late 30s. Am now 15 years on, with 2 knee replacements and needing new hips. My lower spine is degenerating and my feet are ridiculously painful. I have a fab rheumatology team and GP. Current main diagnosis is seronegative rheumatoid/psoriatic, osteo and fibromyalgia. Am on mxt and secukimab (Cosentyx) as well as the usual cocktail of painkillers.

I recently had a steroid injection (depo) and as per usual, now on antibiotics 3 weeks later due to infection. Am seriously fed up as sometimes the side effects of the meds outweigh any visible benefit. Does anyone else find this?

WL

Chris_R

Hi @Wappy_Lady

Welcome to the online community,so glad you have found us and are posting already.

You ask if anyone on the forum is like you having reactions to steroids and medication and also infections as you are seriously fed up as sometimes the side effects of the meds outweigh any visible benifit.

yes my daughter who has Rhumatoid Arthritis Fybromyalaegia and other side effects of both drugs and diagnosis feels just like you. It is often good to talk to others as i am sure everyone has days when they feel like that.

Do go online on our forums as everyone there knows just how you feel and will try and help you through it with suggestions and good advice.

Please keep in touch and let us know how you are getting on.

Here is a link that may help

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

Hope all goes well all the best Christine

Matilda1

Hi, Is any one out there taking Gabapentin that is willing to discuss dosage and side effects.

Wullie

https://community.versusarthritis.org/discussion/57708/become-a-member-readers-say-hi

Chris_R

Hi @Wullie

Welcome to the online community, great to see you posting.

It would be good if you could tell us your Arthritis story then we would be able to help you to the best of our ability.

Everyone on this forum are friendly and will try and answer questions and help in any way they can.

Just go onto the forums and start chatting you will soon get answers. Please let us know how you get on.

Take care and all the best Christine