- Home
- Share
- Forum
- Ankylosing spondylitis Forum
- Living with ankylosing spondylitis
- Finding help for AS pain
Patients Ankylosing spondylitis
Finding help for AS pain
- 35 views
- 2 times supported
- 4 comments
All comments
Courtney_J
Community managerGood advisor
Courtney_J
Community manager
Last activity on 13/10/2022 at 16:47
Joined in 2020
1,280 comments posted | 21 in the Ankylosing spondylitis Forum
10 of their responses were helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Committed
-
Explorer
-
Evaluator
@coskun Hello coskun, thank you for opening this discussion. I'm sorry to hear you're going through so much pain. Let me tag some members who can maybe share some advice with you.
Hello all, how are you today? How do you cope with your AS pain in the day-to-day? Do you find that your pain also causes headaches like it does for coskun? Have you sought out further help for your AS other than your GP? Do you have any advice to share?
@richard0804 @CynthiaC @sASha! @1976apache @Coling @Missy2 @eileengreen @Joduell @saxon49 @GloriaG @Dollydymchurch @Marmitesmum @Scouserdog @Bigpad @SuziBloor @DebiJP @Catblonde @Jenpat @Suzief
Take care,
Courtney
See the signature
Courtney_J, Community Manager, Carenity UK
Bigpad
Bigpad
Last activity on 21/07/2019 at 09:06
Joined in 2018
4 comments posted | 4 in the Ankylosing spondylitis Forum
Rewards
-
Explorer
Hi Courtney
Thank you for your email, my condition is very similar to Coskun with really bad headaches and neck pain, I no longer go for medical advice as I think it is not worth it. The pain is a 24 hour with little rest bite but it does not get me down
if any other member has advice it would be appreciated the only thing is I do not take medication as I have tried them all and none work also physio
regards
pat
Unregistered member
Hi @Coskun. I trust you are
@coskun I trust you are as well as can be expected? I have suffered with A. S for many years now. I've spent a lot of time with my consultant and between us we have worked a regime that works for ME. My pain has been a pain in the past but with Naproxen, Tramadol and Gabapentin taken daily and Dulagutide taken weekly then to finish with Cosyntx monthly. I am virtually pain free most of the time. I do get the odd flare up about once in two months or so, then it's just 8 paracetamol daily until it subsides. THAT'S FOR ME.... Everyone is different the same doesn't work for all? Exercise and diet plays a big part in your treatment believe it or not.
Try different combination's until you find the best one for you. It will not be easy but keep at it, things will come right in the end.
I hope that my experience is of some help to you my friend.
All the best Richard. ?
Bigpad
Bigpad
Last activity on 21/07/2019 at 09:06
Joined in 2018
4 comments posted | 4 in the Ankylosing spondylitis Forum
Rewards
-
Explorer
Hi Coskun
thank you for your comments really appreciate it and will look into it
Hope you keep safe and well
pat
Give your opinion
Members are also commenting on...
Articles to discover...
18/03/2024 | News
11/03/2024 | Nutrition
12/01/2024 | Advice
Who should be on your ankylosing spondylitis (AS) healthcare team?
29/10/2018 | Testimonial
08/03/2018 | Testimonial
25/04/2017 | Testimonial
24/10/2019 | Advice
What is biologic therapy? A focused look at inflammatory diseases
Medication fact sheets - patient opinions...
Subscribe
You wish to be notified of new comments
Your subscription has been taken into account
coskun
Good advisor
coskun
Last activity on 12/06/2021 at 16:28
Joined in 2015
14 comments posted | 2 in the Ankylosing spondylitis Forum
Rewards
Good Advisor
Contributor
Explorer
Evaluator
I have been having a lot of pain in my neck and also overall tiredness which is so constant. If I ever exercise my muscles start aching within 12 hours or less.
I do not have one single day in peace because of these aches and pain. I keep taking all kinds of pain killers but to no avail. Because of this constant pain in the neck, it gives me headaches too; like a vice is around my head. In the past, I had injections into the cervical part of the spine but it was unsuccessful. I take pregabalin 25 MLG and co-codamol, paracetamol, diazepam., losartan,...just fed up with myself really.
Now, I need to find somebody, some clinic to sort out my pain in the neck. I suppose I have bad wear and tear in my joints. I cannot bend down; if I do I get headache straight away. I m 80 his year and live alone in a council flat. I get no visitors and I have no friends or neighbors to be with at least sometimes. I just lead a lonely miserable existence,really. What's the point for being here, I keep saying to myself now and then. My GP is not very helpful despite his good intentions.
I live in Cambridge UK
I used to enjoy my weight training at the gym a YEAR AGO but now, I cannot lift any weight to tone my muscles as often as I would like to. The tinnitus in my left ear is also bad and I keep having difficulties keeping my balance up as I walk in the street. And I suppose all these medications are making me forgetful quite often. I think I have become a proper GAGA! The neck is just killing me right now as I type. Knees went too.
Now this Corona, there are no referrals by our doctors.