banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Forum Statistics
Forums30
Topics43,792
Posts518,796
Members13,840
Most Online1,568
Jun 29th, 2016
Newest Members
Betsy, AshleyB, Dori, Mel_Sigman, wle2
13,840 Registered Users
KickAs Team
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)

Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.

KickAS QR Code
Previous Thread
Next Thread
Print Thread
Joined: Dec 2017
Posts: 3
P
Peter3 Offline OP
New_Member
OP Offline
New_Member
P
Joined: Dec 2017
Posts: 3
Hi, my name's Peter and this is my first post; I have not been diagnosed with AS, but fear it could well be a probable verdict.

Around November 2017 I started waking in the middle of the night with rib cage pain, mostly the rear aspect. It came on seemingly out of nowhere; I cannot point to a single immediate and obvious trigger.

I was around 6 weeks into a new job, the physical nature of which was very similar to my previous employment of 6 years, where I hadn't experienced anything like this. The only tenuous link is that I had a fall at work, perhaps 2 weeks prior to the onset of symptoms, but I was able to return to work the following day, hence my doubt.

I had had a new mattress, which I admit was a bit too firm for even my liking, this has since been replaced to a softer unit with no abatement of symptoms.

My pain started in rear rib cage area, and since then has been 'spreading' to hips, shoulder blades, middle and lower back and lately front of rib cage. I feel like I've been squashed by a pneumatic bear hug or punched inbetween the ribs, I cannot lay comfortably on my front, back or sides without exacerbation. Lately if I want to try and get a good night's sleep, I have to make a mountain out of pillows and lie at 45 degrees.

Doctor initially suspected pulmonary embolism and made a song and dance about blood tests and chest X-Ray - nothing. Prescribed Naproxen (NSAID) and various Codeine preparations (lately 30mg tablets) and unfortunately I don't get any real relief from the medicines. So I just take paracetamol and ibuprofen in the morning to help me loosen up.

Most recent investigation was an ultrasound on abdomen, specifically kidney area; Dr's idea, as I had mentioned that when I have tried lying down, that was where the pain was worse. I asked the Radiologist if there was anything remarkable, and no, nothing.

Last Dr's appointment a CT scan was discussed as being the next thing on the list. So, I await the referral.

I have tried cutting down on starchy foods, and whilst not abstinent, I don't think I've noticed an obvious correlation between diet and symptoms.

As mentioned earlier, when it first started it wasn't so severe and I would 'shake off' the discomfort after an hour or two of being up and active. As time has passed, the pain still dissipates markedly throughout the day, but soreness remains and deep inhalations are uncomfortable.

I'm feeling sorry for myself, as when its bad, I can't move in bed without gritting my teeth or wanting to cry. I would swap all my savings to get to the bottom of my current situation, how I long for a decent night's sleep (laid down whichever way I fancy, as I did for the last 36 years).

So, if anyone has read this far and thinks that maybe my description might indicate AS or not, I'd be really grateful to hear from you?


Not diagnosed yet; going through the motions of different investigations.
Joined: Mar 2002
Posts: 5,188
Likes: 2
I
Titanium_AS_Kicker
Offline
Titanium_AS_Kicker
I
Joined: Mar 2002
Posts: 5,188
Likes: 2
Hi Peter (Geoffrey Boycott forever...Yay)
Welcome here. In its early stages AS can be improved by work, keeping mobile, you can work through it, but not always. AS seems to be characterised by flares as mine-54 years of it- has been. Sometimes I don't know that I have it, other times it is as grim as can be. Xrays and scans are not particularly useful if AS is in early stages, truth is, to be fair to doctors, it is very difficult to diagnose and usually, unfortunately, not until damage has occurred.

Am sure dragonslayer will respond to you, He is encyclopaedic in regard to AS and has suffered terribly with it. Attend to what he writes, it can help.

Best wishes. (where in Yorkshire?. I am in Nottingham

Alan G

Last edited by ineptwill; 03/14/18 10:50 AM. Reason: appaling ,,,,,punctu::ation "
F
Frederick
Unregistered
Frederick
Unregistered
F
Originally Posted By ineptwill


In its early stages AS can be improved by work, keeping mobile, you can work through it, but not always. AS seems to be characterised by flares as mine-54 years of it- has been. Sometimes I don't know that I have it, other times it is as grim as can be. Xrays and scans are not particularly useful if AS is in early stages, truth is, to be fair to doctors, it is very difficult to diagnose and usually, unfortunately, not until damage has occurred.



I managed to stay in work till the age of 33 most sufferers manage longer many right up to retirement age.

I agree about the flare ups they are often the worst part of A.S. I did once go in to remission and was virtually pain free for about 15 years.

You have a better chance of spotting early A.S. with an MRI scan thern any X Ray.

Yes very difficult to diagnose especially in the early stages that is why the time from first symptoms to diagnosis is so long.

F
Frederick
Unregistered
Frederick
Unregistered
F
I have only just read your post Peter and your symptoms are very much like A.S. You don't mention what kind of doctor you have been seen by. So I hope you have been seen by a rheumatologist as a rheumatologist can get you a diagnoses quicker and is much more likely to get you the right treatment. In fact there are some medications that can only be prescribed by a rheumatologist at least that's how it works here in the UK.

Physiotherapy is an important way of treating A.S. So a rheumatologist is more likely to get you seen by a physio. that has experience of A.S. Learn the exercises as you are shown by the physio. and get in to the habit of doing them daily.

I am not a believer in any sort of special diet for A.S. so will make no comment on eating starchy foods.

Joined: Dec 2017
Posts: 3
P
Peter3 Offline OP
New_Member
OP Offline
New_Member
P
Joined: Dec 2017
Posts: 3
Hello Alan, thanks for the response; I'm in Sheffield. I'm still working, I find that after cycling in I've loosened up a bit and perhaps the small amount of endorphins help to soften the soreness.

Hi Frederick, I appreciate your suggestion about an MRI over a CT scan, but as my GP's investigations into this 'illness' are at a relatively early stage, I don't feel comfortable telling him how to do his job. I'm sure I'll become more assertive if I'm still in a similar position in 6 months time and none the wiser! I might suggest a rheumatologist at my next appointment and see if my GP agrees.


Not diagnosed yet; going through the motions of different investigations.
Joined: Jul 2013
Posts: 156
L
L33 Offline
First_Degree_AS_Kicker
Offline
First_Degree_AS_Kicker
L
Joined: Jul 2013
Posts: 156
Hi Peter I hope you dont have AS

Sorry to hear about your situation....

You must see a Reumatologist and ask for a blood test called HLA-B27. If you are positive, then its a high posibility you have AS. If you are negative you could still have AS but will be harder to diagnose.

Ask your Reumatologist the value of your CRP and ESR blood tests once he does them.

If they are high it means you have inflammation in your body and you could have AS or some kind of reactive Arthritis.

All the best


HLA B27+
Have AS since the age of 13.
Diagnosed in 2005 at the age of 22

Joined: Sep 2001
Posts: 6,151
Likes: 3
AS Czar
Offline
AS Czar
Joined: Sep 2001
Posts: 6,151
Likes: 3
WELCOME, Peter!

Regret this sounds very much like AS, and as L33 suggests the HLA B27 test is important along with ESR and CRP. I would ask for the most accurate B27 test (not serological but either Fc or ELISA; these are testing methods, a bit technical but the serological test is very inaccurate).

Any other family member with any health issues?

It is difficult to make the food connection; I did this quite by accident years ago. Fasting always took down flares but that was all I could figure out until learning about the diet so late that I needed a lot more help than that!

Alan's just setting a trap for me...naw he's a good sort and on Your side of the pond, so a good resource too.

HEALTH,
John

Joined: Dec 2017
Posts: 3
P
Peter3 Offline OP
New_Member
OP Offline
New_Member
P
Joined: Dec 2017
Posts: 3
Hello 'L33' and John, thank you kindly for chiming in with your suggestions; it's all very much appreciated!

My father had/ probably still has back problems, but as we're irreconcilably estranged, I have no idea on the specific details.

As I'm with the NHS and not Private, I feel and fear that my self-diagnosis and 'barking' suggestions to my GP about how to do his job probably won't get me anywhere too fast. I will definitely mention my concerns to him in a week or so's time and I hope that it might lead to the necessary referrals to get the aforementioned tests done.

Once again thank you all for your input.


Not diagnosed yet; going through the motions of different investigations.
Joined: Sep 2017
Posts: 3
D
DCR Offline
New_Member
Offline
New_Member
D
Joined: Sep 2017
Posts: 3
Dear Peter3, sorry to hear about your condition.I am a 44y old mom, I have a 9yo boy. As someone mentioned up, you should ask, asap, a HLAB27 test.You don't have to be concerned at all about your doctors opinions regarding your request!If is necessary, change them!You see...you worry to much about what others has to say...Please, read The complete dictionary of disease by Jaques Martel and Healing back pain and The body mind connection by John E. Sarno.Also Letting go by David Hawkins; and Carol Sinclair. Repair your gut, eat clean/natural... ALL my test are PERFECT!! But this nasty HLAB27 gave me pain. In the beggining, I was misdiagnosted. I start to research and read by myself. I ask my doctor to do HLAB27! I have 2coleagues with AS. One of 52yo in bad shape, on classic treatment and one younger(he is on biological treatment). None is better!! I personally quit diary, I eat less meat, sugar, potato, bread...I took orregano oil, an antiinflamatory tea (a piece of cinnamon boiled in water, with fresh ginger and a teasp of turmeric at the end).I drink green tea, lots of water with lemon, coconut pulling, coconut oil, almonds, lots of avocado, homeopathy, vitamin C, Mg, D3, all kind of natural extracts and suplements, like willow bark...I don't sleep enough...so I read that the rest is very important. You should do the kineto exercise daily, keep a good state of mind (meditation, do what you like, made something by hand for relaxation...), without stress.There is so many online health summits you can join...so many posts, blogs to get inspired. It's scary, I know, but you may have a lesson to learn so you have to do part of way to healing by yourself.My first simptom appears after a severe episode of emotional trauma in my life. I personally refuse to take any medication.I think you should work the way you think, we all should do that. Ask for help, ask for guidance and it will appear... Don t look back, dont let the medical history in your family to influence you. Some researches shows that we can change our gene! I thank you all from Kickas because I learned so much from here (inclusive about Hlab27)! More than doctors told me! I wish you all the best. Sorry about my english, it's late in here, 01,00 in the morning. C.

Joined: Sep 2017
Posts: 3
D
DCR Offline
New_Member
Offline
New_Member
D
Joined: Sep 2017
Posts: 3
See here on Kickas: Face1000 - Success Story.


Link Copied to Clipboard
Who's Online Now
0 members (), 41 guests, and 64 robots.
Key: Admin, Global Mod, Mod
Recent Posts
Uveitis again and I miss you guys!
by Magician - 01/20/22 05:14 AM
Popular Topics(Views)
3,181,146 hmmm
1,239,845 OMG!!!!
644,924 PARTY TIME!
Powered by UBB.threads™ PHP Forum Software 7.7.5
(Release build 20201027)
Responsive Width:

PHP: 5.5.38 Page Time: 0.026s Queries: 34 (0.007s) Memory: 3.2384 MB (Peak: 3.5322 MB) Data Comp: Zlib Server Time: 2022-07-01 17:18:00 UTC
Valid HTML 5 and Valid CSS