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#421549 - 11/24/10 09:53 PM Need to vent :(
TARNIP Offline

Registered: 10/15/10
Posts: 52
Well I have my second rheumy appointment next weekend for him to look over my MRI and give me a definitive answer. He has already told me he believes I have "one of the spondyloropathies" (I think thats the word he used?) It will feel like the longest week of my life as I have been in constant pain now for the past week. My right side hip/pelvis plus my thigh and groin are constantly aching and can only be relieved when I bend over at a 90 degree angle. Working at my desk job has been hard and (embarrassingly) bought me to tears the other day and I had to leave early. If I sit or stand or lie down, I ache. I went and got some over the counter anti-inflammatory's that will have to do the job till I see my Rheumy for a formal diagnosis next week. Part of me did not want to post this as I feel like a bit of a sook compared to the pain that so many of you must be in. I imagine I would only be in the very early stages and the pain is still so intense (nearly feel like labour pains all over again). I am looking at purchasing a Vitamix to make whole food drinks to help decrease inflammation levels (but they are soooo expensive) and today purchased a high strength omega 3 supplement (I hate seafood - so supplementing will have to do!)as well as some herbal high antioxidant tea. I am trying to do everything as natural as I can to decrease inflammation levels and get rid of the pain. It makes me really cranky too which is no fun for my hubby and my 3 year old daughter frown. Everyone is suffering at the moment. Thanks for listening, just feeling a bit down and out and am desperately trying to find my light at the end of the tunnel.............

Edited by TARNIP (11/24/10 09:54 PM)

#421551 - 11/24/10 10:02 PM Re: Need to vent :( [Re: TARNIP]
Dotyisle Offline

Registered: 03/07/02
Posts: 9383
Loc: Rosario, Argentina
Hey Tarnip,

Good to vent when needed hear. If you can find some answers, hopefully the pain comes under control. Hope all turns out well with doctor visit.

Pain in beginning can be just as bad... probably at the one year mark my SI pain was the worst it ever was.

Take care,

AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

#421568 - 11/25/10 02:39 AM Re: Need to vent :( [Re: Dotyisle]
Tulip Offline

Registered: 03/25/10
Posts: 132
Loc: Australia

Hi Tarnip
Vent all you like we all understand. Your not a sook !!
Hang in there you poor thing. I am surprised your Dr didn't give you anything to ease pain or strong anti inflams. Sometimes I think we all need to be more assertive and tell the Dr I am not leaving here without something for pain.
We all know about pain!
I get grumpy when I have too much pain too, have a cry and a pity party sometimes too !


#421577 - 11/25/10 03:33 AM Re: Need to vent :( [Re: TARNIP]
Sue22 Offline

Registered: 01/13/08
Posts: 21326
Loc: Upstate NY
sorry you are in so much pain. hope your doctor and you find a drug that helps quickly. i've also found things like PT, chiro (not the old fashioned kind that "cracks the back", mine does A.R.T. (you can google it), exercise, ice and heat, stretching, all those things help a lot.

i also haven't been able to find an nsaid i can take yet (5 nsaids and 4 cox2 inhibitors so far) due to either gastritis, edema, or fatigue side effects. however, some of them work pretty darn well, so have discovered topical nsaids (flector patch over the SI is like a small miracle, i had to insist to the doctors to prescribe it, why didn't any of my doctors suggest it? and KIP gel (ketoprofen, isoprofen, piroxicam) works well on acute trouble spots.) but since i can't cover my body in flector patches or bath in the KIP gel, really do need an oral med. but the topical stuff does help.

and since rheumy #4 (that i went to for 2 years before finally going out of town for help) wouldn't give me any more antiinflammatories, i asked him for LDN (low dose naltrexone) under the argument that it is safe. since that was his argument against all other drugs, kept telling me they weren't safe, which i think was just an excuse he was using, so i used his argument to try the LDN. it doesn't prevent the inflammation, but sure helps things heal up a lot faster! smile

i also use a muscle relaxant, zanaflex. every night at bedtime. it makes a huge difference. i also use it for medical procedures that require being immobile, like the dentist, ultrasound (use it so when they press over my ribs its not so so painful), MRIs. or when traveling (by plane). i've been on that for about 10 years now.

some have found help with cymbalta or lyrica. lyrica just gave me a migraine at low levels, so never got any relief from it.

anyway, if i were on the proper anti-inflammatory, maybe i wouldn't need all these other things. but all these other things can be very helpful as well.

i also have a physiatrist, they are doctors of physical and rehabilitative medicine so are used to treating people with musculoskeletal issues.

and an awesome podiatrist who has given me tips for my feet that no other doc ever thought of!

so, hope this rheumy can help you. but please don't stop there. lots of other tools in my toolbox, long before i found a rheumy that could help.


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.
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

#421589 - 11/25/10 05:21 AM Re: Need to vent :( [Re: Sue22]
TARNIP Offline

Registered: 10/15/10
Posts: 52
Thank you all for your support smile

I certainly know about having a cry and a pity party for myself, but I really hate feeling like that coz there are so many others out there much worse off than myself so I end up getting mad with myself for being so selfish! I would be able to manage a whole lot better without all the pain!! I also miss not being able to do the high impact aerobic activity I was used to, so now losing weight has become quite a large hurdle. I'm kind of hoping the Low Starch Diet can help with that situation too smile

#421627 - 11/25/10 11:48 AM Re: Need to vent :( [Re: TARNIP]
EricaK Offline

Registered: 06/23/10
Posts: 3793
Loc: Colorado, USA
I know this sounds weird, but thank you for venting! It makes me know I'm not alone in this, and that concept ~ via KickAS ~ has truly saved my sanity. There's no way to explain the kind of pain we have to people who have never experienced it. It's sort of like trying to explain to someone who hasn't had a baby what having a baby feels like.... you know... it's kind of like [BLEEP]ing a watermelon. Same with arthritis. My old hiking buddies keep encouraging me to get orthodics for my shoes. They don't get that it's not the hiking/walking that hurts my feet ~ it comes from inside the joints and tendons, or in my case enthesis. So, when people try and understand a backache, usually they're thinking of a muscle spasm that they once had. They're not thinking of the constant agonizing pain when there is no comfortable position. The good news is that your doctor is looking at spondyloarthropathy so closely. Lots of docs don't understand what it is, so your doc is at least on the right track. Do you have access to a warm swimming pool or a large enough hot tub to wiggle around in? That's what turned me around, before I even got effective meds. After being in water for an hour, even if I was just dangling around in the deep end, made me feel more human. Okay, that's my pep talk. I hope you get some relief soon! rainbow
ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

#421657 - 11/25/10 05:21 PM Re: Need to vent :( [Re: EricaK]
TARNIP Offline

Registered: 10/15/10
Posts: 52
Thanks so much Erica smile

I know exactly what you mean when you try to explain your pain to people - it is hard for them to understand. Even my own husband gets angry at me when I am in pain as he doesn't know what to do to help fix it. It's hard because alot of the time I feel ok during the day but then it will flare up badly and people start looking at me like your faking it as I start hobbling from the pain then in a month or so back to normal again!

I have been having warm baths lately instead of showers as I find the warmth helps a great deal. I have got a sample box of Celebrex from my GP until I go back to my specialist on the weekend, so I think I will be taking a few of those to get me through.

Funny you mentioned the orthotics as I was having feet problems all the time and got myself some and I reckon they make the pain worse. I never thought it would be related to anything else at the time and I paid over $500 for them too!

I am lucky with my Specialist looking in the right places as he used to be the head of Rhumatology at the biggest hospital in our city, so am very fortunate there smile

#421685 - 11/26/10 01:08 AM Re: Need to vent :( [Re: TARNIP]
Sue22 Offline

Registered: 01/13/08
Posts: 21326
Loc: Upstate NY
yes, orthotics, even my $300 custom made one make my feet so much worse! but i have a great podiatrist, very practical, love her....after we tried a few attempts at breaking in the orthotics, she agreed with me that my feet really do like flat shoes better and to just go with that! smile not ideal as some padding would be good, but much better than anything that pronates my foot, even into a better alignment.


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.
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

#421719 - 11/26/10 08:28 AM Re: Need to vent :( [Re: Sue22]
Inanna Offline

Registered: 11/15/01
Posts: 18056
Loc: UK
Funny, I don't know what I'd do without my orthotics. If I'm not wearing them or my birkenstocks, I can get a shin splint within 20 feet of where I started walking.

Have either of you tried Dr. Scholl's memory foam inserts? Might give you padding without the problems regular orthotics give you.

Tarnip, never fear about venting here. It's part of why KA exists. We totally get it and that's invaluable sometimes.


A life lived in fear is a life half lived.
"Strictly Ballroom"

#421759 - 11/26/10 01:49 PM Re: Need to vent :( [Re: TARNIP]
rumble Offline

Registered: 01/31/09
Posts: 4486
Loc: NE Oklahoma
Glad you could vent here. It's the perfect place to vent because everyone here understands. We may not be able to make the pain better, but we can commiserate. I hope your dr appt goes well and you get the meds you need.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9

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