It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Arthritis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 11-08-2006, 06:41 AM   #1
Junior Member
(female)
 
Join Date: Oct 2006
Location: sherbrooke
Posts: 32
julie2424 HB User
Ankylosing Spondylitis

My doctor wants me to be tested for Ankylosing Spondylitis i have all the symtoms and an inflammtpry diease in my sacro ilitte so he is pretty sure i have this i have been looking at all the sites on the net about it and i have have 95 percent of the symptoms but the only one i can find anything about is can it make your ankles hurt my ankles have been bothering me a lot lately like if i step the wrong way they hurt and another QUESTION how can i get more sleep then 4 hours a night the pain wakes me up after about 4 hours i am on predisone and amitriptyline 10 mg and still i cant get any relief or sleep should i get a higher dose of amitriptyline and how do the rest of u do it thanks so much and any info will be very much welcome

 
Old 11-13-2006, 10:10 AM   #2
Junior Member
(male)
 
Join Date: Nov 2006
Posts: 10
mikey20 HB User
Re: Ankylosing Spondylitis

Hello Julie , my name is Mike . I too have been told that I have AS . I did have the test for AS and It came back negative ..... which is weird but there are a few people out there that get it but don't have the gene marker HLA B27 that 95% of people that have AS have that marker. My pain did start when I was about 15yrs old in my ankles .... very painful and then it went into my SI joints . I am 37 years old now and it was only 1 year ago when I finally found out that my back was as bad as it was . I had a 3d ct scan , and WOW .... it answered all my questions as to why I was in so much pain . most of my disc spaces are gone and alot of dics have fused. I used to be 6 feet tall and now I am shorter then 5'10. My mri was not as good in answering why so much pain . I have been doing alot of physio but where I did finally find relief was through accupuncture. On a side note , I wanted to find out why why me ... and now have found out that Lyme disease has caused all my problems for the past 30 years, and am currently getting treated for it and feeling much better . I hope you can find relief soon as I know its not a fun disease .

Mike

 
Sponsors Lightbulb
   
Old 11-15-2006, 03:37 PM   #3
Senior Member
(male)
 
Join Date: Oct 2005
Posts: 239
jimmyhonda HB User
Re: Ankylosing Spondylitis

julie - i have anklosing spondylitis but i don't know that AS causes pain in the ankle??? If i am correct, the word anklosing means "fusion" - some people think that anklosing means "ankle pain" because it pronouce similar to ankle.
Therefor this illness has something to do with the fusion of the joints. The joints will eventually fuse up to the point where you don't have much mobility.

you said that u have ankle pains? do u wear high heel or uncomfortable shoes all the time? high heels are bad for you and i don't understnad why females bother wearing them...to me those shoes look ulgy.

people with this illness require constant exercise of there joints to avoid possible fusion. Swimming is said to be the best sport for them as they don't cause much injury to your joints.

try using heat pad for pain relief... and ask your doct for a different anti-infammatory drug if your medicine doesn't work. I am currently using immune-suppresant drug and it's helping me a lot and is said to ease the fusion process.

 
Old 11-15-2006, 05:38 PM   #4
Junior Member
(male)
 
Join Date: Nov 2006
Posts: 10
mikey20 HB User
Re: Ankylosing Spondylitis

Quote:
Originally Posted by jimmyhonda
julie - i have anklosing spondylitis but i don't know that AS causes pain in the ankle??? If i am correct, the word anklosing means "fusion" - some people think that anklosing means "ankle pain" because it pronouce similar to ankle.
Therefor this illness has something to do with the fusion of the joints. The joints will eventually fuse up to the point where you don't have much mobility.

you said that u have ankle pains? do u wear high heel or uncomfortable shoes all the time? high heels are bad for you and i don't understnad why females bother wearing them...to me those shoes look ulgy.

people with this illness require constant exercise of there joints to avoid possible fusion. Swimming is said to be the best sport for them as they don't cause much injury to your joints.

try using heat pad for pain relief... and ask your doct for a different anti-infammatory drug if your medicine doesn't work. I am currently using immune-suppresant drug and it's helping me a lot and is said to ease the fusion process.
Hello Julie, I can't say that I have ever wore high heels ,lol.... but I can understand why ladys would have problems with there feet ....
My ankle and heel were the first time I experienced real pain . I have read that alot of people with as have heel and ankle problems and I sure know I did. It then went to my SI joints then to my back . I used to be over six foot and now I am just a little over five nine. Your right ankylosising means fusion and spodylitis means inflamation of the spine . Over 50% of my back is fused.
Unfortunataly I have found out I have Lyme disease and I did try Metheltrexate which was the worse thing I could of done .... I got soooooo sick and its been 6 months now and I am just starting to feel a little better again . I am currently getting treated with antibiotics and that has helped alot with the back pain for sure . I used naproxen once in a while but I don't want to take too much as it can do bad things to your gut . Swimming is good but I can't ..... It took too long for me to find out what was wrong with me and so much damage is done now , but swimming for sure is good for you .

take care , and I hope you find some relief ..... its suck s to be in so much pain all the time
Mike

 
Old 11-20-2006, 07:28 AM   #5
Senior Veteran
(female)
 
Join Date: Jun 2004
Posts: 558
zoey1 HB User
Re: Ankylosing Spondylitis

it can affect everywhere , however it is most comminly known for contant imflamation of spine and hips and then some folks have rh arthiuts as well .
They usualy do exrays as well as labs to determine it and it is usualy over time that the diagnosis is made.
Unlike rh a which is flare ups from time to time AS is always there and never lessons.
Other thing to note while it is well known for spine hips the other weird places can be around ankles, knees, elbows, and face.
During one of my scares i had face symtpoms acting like the back does with the severe spams and pain in face. The Rh doc dertermined just "as" adnormalties.
What has helped me the most dealing with the horrid pain was eventualy when Rh sent me to my Nurologist who is a pain management specialist. Now i can at least function.
I wish you luck i wish you agressive treatment and please do not be afraid to tell the doc it hurts.
Oh cold, change of weather, storms, can affect and or heighten the really bad moments....

 
Old 11-23-2006, 02:04 AM   #6
Member
(female)
 
Join Date: Sep 2005
Posts: 95
Lady Olivia HB User
Re: Ankylosing Spondylitis

Hi Julie,

I am 42 years old and have had AS for around 5 years now but wrongly diagnosed til this time last year. It started in my back then my knees and now my ankles, shoulders elbows wrists and arms. Yes AS or any form of spondyloarthropathy which is the family it is from can cause pain also in your tendons. AS can also affect your heart lungs and bowels if you leave treatment too long. I didnt know I had it and didnt take any medicine and nearly lost my life with bowel problems. Dont ever be worried to ask questions as many as you need til you find the answers. I kept believing my Rhuemy was right until I got a good one that then agreed with what i was saying. In females it is worse when menstruating you will probably find that you swell the most everywhere around that time. It is a nasty disease but now I am soon to start enbrel I know this will be the answer for me. You must take care of yourself. As for your sleeping there is no answer there because for me I find if I sleep too long I end up alot more stiffer and in pain so my body clock has learnt to deep sleep me for two hours and wake me up to move. Swimming is a good form of exercise but once again be careful as the density of the water can sometimes bring swelling out. A heated pool is the best way. Hydrotherapy if possible. I was feeling alone like I was the only person in the world that had this condition I am glad to have someone to talk to about it. I never wore high heels either.
This condition can affect your muscles so protein in your diet is very important as well as some potassium. What you eat and drink can make a big difference.
If I can be of any further help please just ask away I am only to happy to share.
Good luck
God bless
Olivia

 
Old 12-11-2006, 02:57 PM   #7
Newbie
(female)
 
Join Date: Dec 2006
Location: nc
Posts: 2
goldielocks5237 HB User
Re: Ankylosing Spondylitis

hey Julie..I am a 55 yr old female with as..I have had all the usual pills...daypro, vioxx (sorry bout spelling) bextra, and the only thing that helped me ( I have had it for ten years in hips and back and neck) was a bc powder the green kind but I took two at a time untill eventually I was up to 100 of the dang things a week!!!!!!! Now I am off of them due to eroded esophagus and a very bad stomach ulcers and the whole bit...I knew they were hurting my stomach but they worked so good and so fast.So this is to tell you not to do as I did....I went to unc at Chapel Hill today and I am going to start remicade...........I am very scared of all the side effects but I have got to do something or I will be in a wheel chair...There is an ankylosing spondylitis foundation on the internet.Just type ankylosing spondylitis organization in your search box and there are loads of info there..Hope this helps........Kathy

 
Old 12-11-2006, 03:04 PM   #8
Newbie
(female)
 
Join Date: Dec 2006
Location: nc
Posts: 2
goldielocks5237 HB User
Thumbs up Re: Ankylosing Spondylitis

lady olivia...You are dead right on everything you said in your post..I have had AS for ten yrs and I too have bad bowels I almost died last year! Go to the AS Foundation and get support like I did It helps to know you are not alone....Good Luck and God Bless

 
Old 12-15-2006, 02:29 PM   #9
Member
(female)
 
Join Date: Sep 2005
Posts: 95
Lady Olivia HB User
Re: Ankylosing Spondylitis

Hi Goldie,

It was great to read your post and to know that I am not alone. The bowel thing is horrific. As for the remicade dont be afraid it was good for me until it simply just didnt work. It was too long in between refills ha ha.. It did make my toes go purple however if I sat for too long. So keep an eye on your circulation. I found enbrel to be better. It also helped my bowels and stopped the diarrohea but unfortunately I have an allergic reaction to where they inject it so the next stop is Humira. I once was scared of any kind of medication even paracetamol. Just dont like taking medicine but now I would take anything if it meant a better quality of life and no wheel chair. It is amazing how you change. What happened with your bowel if you dont mind me asking? I just developed chronic diarrohea and went from 94kgs to 46kgs in three months. Couldn't eat or anything. Just felt sick all the time and very weak. The specialist said that if I hadn't got to hospital when I did I had about four days to live. That was really scary but am much better now up to 52kgs aiming for 60 not sure what that is in pounds but I was a big lady.
Thank you again for wishes. I wish you all the best too and thanks for taking the loneliness away.
Good luck
Olivia

 
Old 01-08-2007, 06:37 AM   #10
Newbie
(female)
 
Join Date: Jan 2007
Location: northeast UK
Posts: 6
debbyftm HB User
Re: Ankylosing Spondylitis

Hi...my AS was discovered after going to my Gp compliaing of pains in my ankles tooes and botttom of feet. I am on steroids at the moment and i am feeling quite good.
I found this if its of any use


Patients with ankylosing spondylitis can also have arthritis in joints other than the spine. Patients may notice pain, stiffness, heat, swelling, warmth, and/or redness in joints such as the hips, knees, and ankles. Occasionally, the small joints of the toes can become inflamed, or "sausage" shaped. Inflammation can occur in the cartilage around the breast bone (costochondritis) as well as in the tendons where the muscles attach to the bone (tendinitis) and ligament attachments to bone. Some patients with this disease develop Achilles tendinitis, causing pain and stiffness in the back of the heel, especially when pushing off with the foot while walking up stairs. Inflammation of the tissues of the bottom of the foot, plantar fasciitis, occurs more frequently in persons with ankylosing spondylitis.

Debbie

 
Old 01-10-2007, 05:32 PM   #11
Junior Member
(female)
 
Join Date: Jan 2007
Location: wellington NZ
Posts: 28
maelia HB User
Re: Ankylosing Spondylitis

hey, im 17 recently diagnosed with AS, it sucks pain is really bad, and yeah it can affect all joints including ankles. Best to see a rheumatologist if u can afford it, specialist with arthritis lots of different meds. To help with sleep my doctor gave me sleeping pills cause the pain was so bad still not better yet.

 
Old 01-10-2007, 05:40 PM   #12
Junior Member
(female)
 
Join Date: Jan 2007
Location: wellington NZ
Posts: 28
maelia HB User
Re: Ankylosing Spondylitis

your post really sweet, thanks made me cry, im so sick of it i'm only 17 and keep questioning why me? my life is a mess, but i am glad to know that some people understand if not everyone. high heels dont cause the pain, im studying it at university it is an auto immune diesease your body attacks joints, high heels could make pain worse. My SI joints are the worst hav to lie flat on back, getting steroid injections in them maybe try getting them in your ankles?

 
Old 05-31-2009, 02:09 AM   #13
Newbie
(female)
 
Join Date: May 2009
Location: australia
Posts: 5
sfowens79 HB User
Re: Ankylosing Spondylitis

HELLO There! I have had AS for years now and didnt get diagnosed till I was in my 40's. I suspect I had it when I was young. Now under reumetologist who give me Humeria Injections which I administer to myself every two weeks. I have 1/2 valium and 1 temaze, to help me sleep. Cant lie flat on my back anymore. You are lucky to be young and you MUST do pilates to keep your posture and protect your lungs. take care and keep those joints moving.

 
Old 06-01-2009, 01:19 PM   #14
Senior Member
(female)
 
Join Date: Feb 2004
Posts: 161
Vuitton70 HB User
Re: Ankylosing Spondylitis

I have a question for all of you that are familiar with AS. I have been on the arthritis merry-go-round for about 8 years now. I had gone into my former GP w/ joint pain, fatigue, etc. and had a positive RF but the rheumy I was referred to was a real winner, took a set of hand xrays and said I was too young to have arthritis (I was 31-38 now).

Fast forward all these years, I have had the same joint pain & low back stiffness/pain. I recently took a 20 foot fall in 03-04 and have a torn/buldging disc ast L4-L5 a flattened disc at L4-S1 & my SI joints are very messed up. He also said that on my back xrays that I do have arthritis down in the lumbar area.

I can never tell what affliction is hurting so badly from day to day, so, I finally went to my new GP b/c I am feeling so terrible.

He immedately said he suspected AS (which I had never heard of until recently) and ordered a plethora of blood tests, including ANA and RF but not the HLA-B27 test. Can I be diagnosed w/ out that test?

I want off this ride. In addition to my lumbar issues, I have C-spine pain w/ lots of buzzing/tingling and numbness (I often wonder if MS is in my picture somewhere too).

TIA!

Last edited by Vuitton70; 06-01-2009 at 01:23 PM. Reason: forgot something

 
Old 06-02-2009, 06:51 PM   #15
Newbie
(female)
 
Join Date: May 2009
Location: australia
Posts: 5
sfowens79 HB User
Re: Ankylosing Spondylitis

Quote:
Originally Posted by julie2424 View Post
My doctor wants me to be tested for Ankylosing Spondylitis i have all the symtoms and an inflammtpry diease in my sacro ilitte so he is pretty sure i have this i have been looking at all the sites on the net about it and i have have 95 percent of the symptoms but the only one i can find anything about is can it make your ankles hurt my ankles have been bothering me a lot lately like if i step the wrong way they hurt and another QUESTION how can i get more sleep then 4 hours a night the pain wakes me up after about 4 hours i am on predisone and amitriptyline 10 mg and still i cant get any relief or sleep should i get a higher dose of amitriptyline and how do the rest of u do it thanks so much and any info will be very much welcome
Yes your ankles can hurt. Its a form of arthritis. I get Valium2.5 mgms, temaze, prothiaden to help me sleep and panedene forte for pain. I use heat bags for my neck and ankles to get the blood circulating. I have a QRS magnetic therapy mat too. I seem to sleep for 6-7 hrs before I wake. I am injecting Humeria injections 2 weekly. I was on the infusions for about 2 years and found that they plateaued for me. Not to mention staying in hospital all day was a real pain. The injections have given me a new lease of life and I am pretty damaged in my spine. i will never straighten but my pain levels are not nearly what they were and I am pretty flexible. I am 57 and full of life. It stinks this disease.Take care

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
ankylosing spondylitis and Growth Hormone lwgy Arthritis 5 07-08-2009 05:58 AM
Anyone with Ankylosing Spondylitis? sanns29 Arthritis 8 11-06-2006 01:07 AM
Is a heriditary fused vertabrae in cervical spine Ankylosing Spondylitis?? Glenzo Arthritis 1 09-29-2005 04:25 PM
enthesitis froggy123 Arthritis 2 05-22-2005 08:13 AM
Ankylosing Spondilitis karloff Arthritis 22 01-31-2005 07:29 AM

Tags
ankylosing spondylitis



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Bextra
Celebrex
Enbrel
Humira Ibuprofen
  Methotrexate
Mobic
Prednisone
Tylenol
Vioxx




TOP THANKED CONTRIBUTORS



jennybyc (108), Haydena (90), Moldova (47), margarita889 (23), d j (21), Janet20 (16), ladybud (13), Greengal04 (10), dajo (10), gingertea (8)

Site Wide Totals

teteri66 (1180), MSJayhawk (1009), Apollo123 (909), Titchou (856), janewhite1 (823), Gabriel (760), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 08:09 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!