banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Kickas Links
·HOME
·Forums Main Index
·Register!
MEDICAL CENTRE
·Medicine Contract
·AS Patient Guidebook
·Pain Map
·Disease Modification
·Ask your doctor
·AS and RA Papers
·AS Acronyms
DIET CENTRE
·London AS Diet
·Molecular Mimicry
·AS Dietary Primer
·AS Food Guide
SUPPORT CENTRE
·In Memorium
·KickAS Stories
·KickAS Banners
·Donations
Forum Stats
12,630 Registered Members
28 Forums
43,330 Topics
515,609 Posts

Most users ever online: 1,568 @ 06/29/16 03:25 PM
Newest Members
yurayurayura, Foonda, Dea, Navdeep, dwarner
12630 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.
Topic Options
#507686 - 11/17/14 02:57 PM Diagnosis eluding me -desperately needing support!
Nikki3614 Offline
New_Member

Registered: 07/10/14
Posts: 2
Loc: South coast of England
Hi everyone,

I'm a newbie and this is my first post! I know I must be about the 1000th person coming on here, giving a list of symptoms and asking for your opinions...I'm so sorry for doing it...I'm just so desperately looking for help and I'm not getting it from doctors. I really am just feeling so low and so confused and I'm just so needing to find someone who will understand what I'm dealing with and not think of me as a hypochondriac or are some kind of mad person!!

I'm a 33 year old female living in the UK and I've had chronic back pain since I was around 18. In the last few years I've become more and more aware of pain in loads of other areas, plus other strange symptoms. The below are the things I experienced regularly:

Chronic back ache (15 years) usually in lower back but sometimes middle
Pelvic pain (this can be agonising sometimes)
Hip pain / buttock pain
Shoulder / neck pain
Pain in back of ribs that forces me awake early morning
Stiff sore feet (usually one foot) when taking first steps of the day
Coccyx pain (sometimes feel bruised just by sitting down)
General achey stiff knees that feel like they might 'give way' occasionally
Top of shin pain when I lift my right leg
General stiffness (never been flexible and many people have comment on how stiff I am)
Arthritic feeling fingers (right hand only)
Bloodshot, uncomfortable eyes sometimes bouts of ‘crusting over’ at night – comes and goes
Beau’s Lines on thumb of left hand
IBS
Gluten, corn & dairy intolerance
Nasal sores / cold sores
Easily bruised
Fatigue
Uncomfortable heels
One clicking ankle & the occasional need to ‘push my wrists back into place’ (for as long as I can remember)
Debilitating period pain – pelvic and cramps
Slight wheezy cough
Depression

I gave all or most of these symptoms to the rheumatologist I saw today and he said I definitely don't have ankylosing and he can't find evidence of anything else either. I told him of the particular pains I'm experiencing today - which are really sore sacroiliac area pain and shoulder and neck pain plus pain in my right shin and fingers on my right hand (Yup it's a good day!!). He didn't really seen to do many tests that looked at the sacroiliac area - I thought that was a key marker of AS so I'm not sure how he could eliminate it without really checking that area much?. He checked pain in my legs by lifting and twisting them in various directions (I felt pain in my hips mainly when he did that) ....but I can't understand how he could completely rule out ankylosing and also not come up with anything else either.

I just wondered what you think? I feel like I'm going mad. Doctors keep patting me condescendingly on the head and sending me away but I'm in so much pain I'm really starting to struggle to cope with it. I should mention I'm HLA-B27 negative apparently and nothing ever seems to show up in blood tests. I found I can make a significant improvement through diet - I was put on the low fodmap elimination diet by a dietician to try get to the bottom of problem foods. During the time on the diet I've discovered that corn really flares up my pain badly as does dairy. I'm already gluten free and have found that since cutting it out the stabbing pains in the back of my ribs have stopped. I don't think the dietician I've been seeing is very familiar with the fact that gluten, dairy, corn and starch can actually cause serious pain and so she told me I wasn't eating enough starch. I put rice back in my diet...and low and behold I am in agony today and have been for a week or so now.

Sigh. I won't keep waffling on - I'm sorry if what I've written is hard to follow. I'm in so much pain today that I can't fully concentrate but I think the best time to send this is while I'm in full flare up so I don't miss anything vital!

Any thoughts or advice you might have would be soooo appreciated. Don't worry I know you are not doctors and will not take anything you say as a diagnosis, I'm just so desperately needing to feel I'm not the only one feeling like this frown

Thank you so much for your time

Love Nikki
_________________________
Been in pain for 15 years...no diagnosis and no doctor batting an eyelid so I'm turning to this forum for some tlc!

Gluten Free, mainly dairy free, corn free, oat free since September 2014 and still testing out nightshades and starches

Top
#507688 - 11/17/14 06:12 PM Re: Diagnosis eluding me -desperately needing support! [Re: Nikki3614]
Lon Offline
Very_Addicted_to_AS_Kickin

Registered: 09/11/01
Posts: 8327
Loc: Gillette, Wyoming
Nikki-
Hi nice to meet you!
You sound very much like most / many of us!
I still struggle to get a good diagnosis. so hang in there.

Others will give you more specific help, I wanted to say that you are not alone. We care.
_________________________
1 Kings 20:1-22
ne triumphum canas ante victoriam.




Lon

Top
#507691 - 11/17/14 08:20 PM Re: Diagnosis eluding me -desperately needing support! [Re: Nikki3614]
Kleb_Slayer Offline
Second_Degree_AS_Kicker

Registered: 02/13/11
Posts: 237
Loc: BC, Canada
Oh boy, hello... Yep, I can check off pretty much your entire list based on my own experience of symptoms (mostly in the past now, for me)!

It was super overwhelming when all those symptoms started to really accumulate in my mid 30s. Before that I went through various stages of symptoms, from pre-teens and onwards, but once I hit the even 30, things really started to change.

I am also officially undiagnosed, but have buy-in from my 2nd rheumatologist (the first one brushed me off) that I have "chronic back inflammation" (she hasn't even commented on my history of IBS, major-joint promblems, etc.). I think my saving grace has been my positive B27 test, since nothing ever registered on ESR or CRP tests for me, but really it's thanks to KickAS and other internet sources that I now manage my inflammatory symptoms by myself.

Do as much research of your own as you can, on this site and others. Lots of good info out there, and nothing really beats people who share their first hand experiences!

Hang in there. These types of multi-symptom diseases are frustrating to tackle, and difficult to get diagnosed (it may take years), but it's my opinion that there are definitely things you can do on your own to improve your health (my positive experience has been with diet/nutrition).

Keep reading & asking questions. It's not just "in your head," and if a medical professional tells you that, then don't waste your time. Find someone new to try out. wink

/Kristine
_________________________
B27+, 2nd Rheumy: 'inflammatory backpain'.
IBS + SI/lumbar/thoracic/cervical/knee/elbow stiffness & pain.
Managing inflammation very well with diet since Jan 2011. Slow but consistent reduction in symptoms year by year.
Took LDN (4.5mg) between 2013 & 2015.

Top
#507728 - 11/21/14 05:53 AM Re: Diagnosis eluding me -desperately needing support! [Re: Nikki3614]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21298
Loc: Upstate NY
Read my reply in this thread:

http://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=507666#Post507666

too: HLAB27 neg, CRP and ESR were always borderline (most doctors considered this normal but my current rheumy considered it abnormal), radiography was never too exciting.

the secret is to find a doctor who will dx and treat based on your symptoms.

and so you know, except for when my SI goes through a big flare, I can bend, touch my toes (almost), etc....i'm not that restricted in my movements, i'm only stiff in the morning until I stretch out and take a shower.....i fail the checklists, but as you can see, i have a list that can be dx'ed by the right doctor.

and so do you I believe.

my dx is just spondyloarthropathy.

i get the dry eyes but not iritis.

i get very mild psoriasis that i thought for years was just "dry skin", who knew!

have a GI doc do a colonoscopy up into the ileum. inflammation there is another symptom that can help with a dx.

i had a bunch of rheumies tell me that i did not have an inflammatory arthritis.

but i do.

and i am now a poster child for humira.

so, find another rheumy if you need to.

work with a GI doc for a dx that way.

if you have any skin symptoms, take photos for documented proof. see a dermatologist. get a dx that way if you can.

work with an eye doctor to document dry eyes if that is what you have. iritis would get you a dx easier.

i now get a malar rash sometimes. a dermatologist can dx that as well.

to sum it up, finding the right doctor is key. and you may have to go through a bunch of them before someone is smart enough / motivated enough to dx and treat you, regardless of what you have.

also family history can help.
_________________________


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#507742 - 11/22/14 01:33 PM Re: Diagnosis eluding me -desperately needing support! [Re: Nikki3614]
Pea Offline
Captain_AS_Kicker

Registered: 02/24/11
Posts: 1968
Loc: Pacific Northwest
Hang in there Nikki,

I would find another Dr. for starters and find a pain clinic to help manage your pain. Sometimes it takes years for it to show up on MRI's or even x-rays. Specific CT scans will show inflammation though. What you are experiencing especially in your heels is enthesitis. The Achilles wraps clear down under you heal and get's inflamed. I'm having that problem right now and can't walk without being on Prednisone. I am also negative and my blood markers usually show normal when I've wanted and have screamed with pain before.

You have to be your own advocate for care and will need a team of Dr.s so get out and get a second opionion if you can. Does anyone else suffer these symptoms in your family?
_________________________
Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013

Top
#507859 - 12/01/14 05:19 PM Re: Diagnosis eluding me -desperately needing support! [Re: Nikki3614]
Nikki3614 Offline
New_Member

Registered: 07/10/14
Posts: 2
Loc: South coast of England
Hi everyone, sorry for being so slow to reply - I honestly thought my original post hadn't submitted to the website so didn't check for a little while. Was just looking on the forum again on the off chance and found it and I'm so ....grateful for your responses!

Thanks so much for what you've said. I cannot tell you what it means to me to just even have people like you out there who can understand the symptoms I have (even if it's not AS I think it must be similar) - it's been about 15 years of pretty much being ignored...being told I'm fine...being told I'm normal...being scoffed at as if I'm some kind of attention seeker (that's the one that actually hurts the most) Hearing your comments feels like being brought in from the cold and it brought a tear to my (dry!) eye so thank you thank you thank you.

Since I posted on here I actually contacted the helpline at NASS.org - National ankylosing spondylitis society (UK) and they have been so helpful. One lady in particular has responded to me and -like yourselves - she is on record for me as being one of the first people EVER (other than partner and people closest to me) to take me seriously and take me at my word. What a difference that has made to my mental attitude. I have been so alone in coping with this for years - I am finally starting to get somewhere. She has advised me to carry on with the blood tests and ultrasound on my hand that the consultant has booked in for me but she says I need to push for a 'STIR' MRI scan as that's the type that will show AS damage. She said she's happy for me to use her email to try force the issue if the Rheumatologist continues to refuse me. I get the impression that she agrees with my thinking - that the rheumatologist only tested my small joints and didn't seem to do any testing of the area that I was actually complaining about - the sacroiliac joints

Funny enough - re family history, I told the rheumatologist I saw, that my Dad has been suffering with arthritis for years (he's 59) and has stiffness of the spine (he struggles to get shoes and socks on and off which - as far as I understand it - is because he hasn't got the flex in his spine. My dad's mother (my gran) has to use a special contraption to get her socks/ tights on because she can't reach). My Dad struggles to get up if he's been doing DIY jobs on his knees and he finds he struggles to grip things in his hands. Not only that he thinks his issues started around the age of 17!! If that isn't enough to point to AS - through my own research I found that sensorineural hearing loss has been linked to ankylosing - and that is also something my Dad suffers with! He has never been diagnosed but he struggles to hear when more than one person is talking or when there is a certain level of background noise - he's been like that for years. One other major connection is that my Dad has also experienced the pain in the back of the ribs that I get in the early hours of the morning- the type of pain that you can't sleep through and can't get rid of without actually getting up and out of bed. No amount of tossing and turning will help it - it is horrendous. Within about 20/30 mins of getting up, the pain fades. (If I'm not experiencing that type of pain then I just have a general body stiffness that fades once I'm up and moving). Actually I found that the rib pain stopped, along with most of my foot pain after I fully cut wheat/ gluten out so fingers crossed I've worked out the trigger for that particular symptom. )

I didn't tell the rheumatologist about the hearing issues as I hadn't discovered it at the time - plus it's a rather unofficial thing as it's just off the back of my own research. I did however tell him about my Dad's arthritic joints and stiffness and he didn't appear to make any kind of link so ...yep I completely agree that a different doctor would be ideal.

Trouble is - in the UK these things are done on the NHS so you get forced into one appointment and there's so little you can do about it. I could go private but it would cost a fortune and would have to go on credit card as right now I can't afford it. I have a follow up appointment with the rheumatologist on the 10th Dec so I'm really going to try push for the MRI as I think it's essential to see if there's any damage.

If you're still there - reading this - can I please ask....when I saw the rheumatologist I told him that as well as my list of symptoms, when I'm really struggling with pain I feel like I'm almost being pushed forwards at the top of my back - it's like I'm fighting with an invisible person all day just to hold myself upright from the base of my spine and it is exhausting and painful. I find myself contorting in all sorts of directions just to desperately try ease it (I have an office job so am stuck seated for 7.5 hours a day at least) I end up feeling so desperate to slouch or lie down - when I get home I lie down but only for half an hour or so otherwise a different type of body ache kicks in! Anyways my point is that the rheumy told me that the feeling of being pushed at the top of my back is 'not something someone with AS would experience...' do you experience that? Or if not do you know it to be a feeling that some people with AS do get?

Lon - thank you so much for your comments - that means the world to me smile

Sue22 - thanks for all your advice - that's fascinating what you've said about 'mild psoriasis' I get very dry skin on my legs and I've never thought twice about it. They actually almost look a bit scaly sometimes & I've always just presumed it's dry skin from where I shave my legs and don't moisturise....now I'm wondering if it's more than that? The random dry eye problem drives me insane...I may try go back to the GP and beg for an appointment with an ophthalmologist...definitely another way to tackle this

Kristine/ Kleb_Sayer - I 100% agree with you....the only reason I even found Kickas was through my own research because like you it's all just starting piling in on me in my 30's and I'm tired of just accepting it. Beyond that I CAN'T accept it because the times when I'm in real pain - like when I wrote my first post - I struggle to cope. The good news is that like you I'm finding a positive response through changing my diet and feel pleased at least that I can find some level of control over it.

Pea I'm so sorry to hear that you have to take painkillers to even walk - that's a horrendous thing for anyone to experience. Thanks for your comments - I have the exact same thing that blood tests never show anything - even when I'm in agony...it's hard to comprehend and has completely hindered me from getting any doctor to take me seriously.

Anyways - sorry for my huge post - if you're still reading - thanks so much....you've all helped make coping with this a whole lot easier knowing I'm not alone smile

Love Nikki x
_________________________
Been in pain for 15 years...no diagnosis and no doctor batting an eyelid so I'm turning to this forum for some tlc!

Gluten Free, mainly dairy free, corn free, oat free since September 2014 and still testing out nightshades and starches

Top
#509443 - 02/21/15 05:12 PM Re: Diagnosis eluding me -desperately needing support! [Re: Nikki3614]
Possi Offline
Addicted_to_AS_Kickin

Registered: 11/13/02
Posts: 6913
Loc: Oklahoma where the wind comes...
Nikki,

I hope you are getting some answers and are feeling better. I haven't been here a lot lately but wanted you to know that I read your post and have been there and I care deeply about you and your situation.

Come back often.

Blessings.
_________________________


Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."


Top
#509661 - 03/01/15 02:30 PM Re: Diagnosis eluding me -desperately needing support! [Re: Nikki3614]
slicer Offline
New_Member

Registered: 02/27/15
Posts: 9
Nikki,
your health problems you describe are all a result of a bacterial infection. That's right, a bacterial infection. In you teenage years you had an infection that never left you even though you may not have a clinical case at the moment. Because you are a female many times that infection is a UTI. What ever it is that infection IS the source of your problems. All the symptoms that you describe are just that, Symptoms. Control the infection and you will control the symptoms. This may take 1-3 years of an antibiotic but it will work. Look up "Roadback.org" google minocycline and arthritis. Be you own advocate and get going at treating the cause of all these aches and pains.

Top
#509682 - 03/02/15 02:37 PM Re: Diagnosis eluding me -desperately needing support! [Re: Nikki3614]
ValsMum Offline
Steel_AS_Kicker

Registered: 07/05/10
Posts: 1168
Nikki,
Search/google the Autoimmune Disease Paleo Diet, it is strict, but if you do the diet, you will feel 50% better in a week or two, I have nothing to gain by telling you this. Diet change has helped my RA SOOOOOO much, and it just keeps getting better.I had knees that were swollen and painful for three years and now they are flexible and I have no pain or swelling in my knees.I have had six nodules go down to two nodules. My anemia went away too. I am improving instead of degenerating. Honestly, it has been slow healing, but I AM HEALING.
Bad health can be reversed, not by a pill, but by nutrients, vitamins and minerals AKA a good diet. Your body will heal. Dont get overwhelmed by a big diet change, if it is too hard for you just do it 80% or 90% of the time, YOU WILL NOTICE the improvements. If you can handle the AUTOIMMUNE PALEO diet 100% then go for it, you are going to feel better.
Take care, I wiĺl pray for you .
_________________________
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

Top

Moderator:  WendyR 
Who's Online
0 registered (), 132 Guests and 1 Spider online.
Key: Admin, Global Mod, Mod
Recent Posts
Has anyone here had C. diff?
by MikeGinnyMD
07/17/17 09:10 AM
No sugar , No starch, say what?
by Amiron
07/17/17 04:15 AM
Pain relief
by Josh300788
07/16/17 02:26 PM
Radon Therapy Czech Republic
by Luigi
07/16/17 07:04 AM
Not getting notifications...
by EricaK
07/12/17 03:46 PM
Multiple Sclerosis link to Prof Ebringer & opinion
by DragonSlayer
07/10/17 03:48 PM
Going to start Cosentyx next--6th biologic
by rumble
07/09/17 02:05 AM
(Views)Popular Topics
"FITNESS" TEAM! - All Physical Activity & Sports 33,432,906
hmmm 1,653,429
Has anyone had Pedicle subtraction Osteotomy ? 1,430,094
What to do about healthcare? Can it be fixed? 915,098
User names revisited 805,393
Medicinal Marijuana 714,946
A.S and beds, What do you find best? 706,460
OMG!!!! 658,931
No/Low Starch Diet Success Stories 489,888
THE STARCH CONTENT OF FOODS - THE LIST 410,089