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#321690 - 12/31/08 08:23 AM Desperate after 24 years, terrified of meds.
swim2lakes Offline

Registered: 12/30/08
Posts: 70
Loc: Fingerlakes, NY, USA
Greetings, all -
i have hit rock bottom. 24 years of this. Med free at this point, but have to do SOMETHING, have lost the will to live. Lyrica? Cymbalta? LDN? sulfasalazine/methotrexate?

For the first 14 years tried every drug, failed surgeries, etc. Even tho' HLA-B27 positive, was told this was not AS.
Eventual Exploration of S2 nerve root found abberrant arteries and veins running through and wrapping around the nerve root with a badly damaged nerve (bilateral). PRior to that had a bilateral SIJ fusion which was a disaster and i nearly died. Wheelchair use got me out of the house and kept me working for a while but no longer.
Over the years more and more pain and disability crept in and was chalked up to "overuse", "disuse", etc etc. When psoriasis showed up all of a sudden the newer pains were credible. Besides Pain and severe depression, the number ONE complaint is a chronic flu-like condition. Besides losing a promising career i grieve over never having had children due to this. Pretty much home bound other than dragging my AS to the pool 3 x /week and to a lake every nice day in the summer. I swim 1 mile (NO kicking), but my shoulders are giving out from swimming/wheelchair/AS?

I now have pain in every joint in my body except my ankles, psoriasis, the s2 nerve damage with lancinating shock pain, finger pain often severe, plantar fascitis, etc etc. Oh.. i am 52, F and former wild child.

I read and re-read these boards and think that people just go from med to med with no relief and tons of side effects. I did that for hte first 10 years. Last experience with meds nearly 15 years ago was oxycontin that made me puke for 3 days. Even hydrocodone cough syrup makes me throw up. Tegretol gave me the rash.

I fear the drugs make me fat and or stupid and still unwell. I have two things left in life. Swimming and dock sitting 6 months a year (thus what to do about the sun???) and sex for endorphins (thus fear of cymbalta). Wellbutrin made me nuts.. i HATE anything "speedy". I could ALMOST deal with all this pain if i could rid myself of these flu-like symptoms, cold sweats, etc.

Haven't seen a rheumy in 15 years, but going next week. I think that he will immediately tell me sulfasalazine and dismiss that i swim in open water and bake in the sun in the summer and without that would never leave the house.
I truly am "done" here.
Hoping for a pep talk......and some wisdom and to hear from someone who actually FEELS BETTER
with many thanks...

#321691 - 12/31/08 08:28 AM Re: Desperate after 24 years, terrified of meds. [Re: swim2lakes]
George Offline

Registered: 04/10/02
Posts: 304
Why not try the starch free diet, George

#321692 - 12/31/08 08:32 AM Re: Desperate after 24 years, terrified of meds. [Re: George]
swim2lakes Offline

Registered: 12/30/08
Posts: 70
Loc: Fingerlakes, NY, USA
yeah, i wonder. YEARS ago i did all those things.. strict macrobiotic diet, starch free, nightshade free, supplements, voodoo. Felt no better and really missed pizza and homegrown strawberries. Perhaps it is time to try again....
BTW, THANK you for responding, i have become quiet isolated and for some reason do not answer the phone, talk to dear friends, etc. Just tired of complaining. Visits just wipe me out.

#321693 - 12/31/08 08:42 AM Re: Desperate after 24 years, terrified of meds. [Re: swim2lakes]
Orch Offline

Registered: 09/05/01
Posts: 2192
Loc: Utah
I fear meds also, but still take NSAIDs a couple times a week. The anti TNF's were great until MS showed up. Anti-TNF's may be an option for you. I am on the fence about the starch free diet. I have cut down on how much starch I eat, but I do still eat starch foods. Running for me is what really helps, and I run 3 times a week.

good luck
Steve Orchard, Running from AS & MS

#321694 - 12/31/08 09:08 AM Re: Desperate after 24 years, terrified of meds. [Re: swim2lakes]
Tamara Offline

Registered: 12/21/08
Posts: 377
Loc: Illinios
I went over 10 years without seeing the Rhumey for many reasons. when I was in his care years ago, my children were small, life was crazy, the med made me sick but I did go into remission so as sick as the meds made me I did get better.. That lasted for about 5 years with little flares that were tolerable with OTC meds and rest. When the AS became very active again I was in denial and did not go the see him I think there were so many memeories of the challeges years ago I did not what to start it all over again. Ignoring it all just taking OTC med for those years was the worst thing I could have done. I ended up with torn tendons and have done some real damage to parts. What I found was that they seem to know so much more about AS. Years ago you could barely goggle AS and find anything on it. and have new drugs that are helping us. Kick your fears aside and see the Doc. I am glad I did and I will be on the road healing, not only the pain and the diease but my mind in accpetance of what I have to deal with. I promised my self. Good luck to you!!

#321695 - 12/31/08 09:11 AM Re: Desperate after 24 years, terrified of meds. [Re: swim2lakes]
30yrvet Offline

Registered: 09/10/07
Posts: 2074
Loc: Massachusetts
Hey Swim,

I too am a swimmer, and envy you being able to swim as often as you do. I had to temporarily stop because of AS/CES pain, but I am going to get back "in the swim" soon.

I'm afraid I don't have any quick solutions. There may not be any. Of course when you go to the rheumy you should discuss Humira, Embrel, or Remicade. I'm sure you've heard of them here. I was on Humira, and had to stop because of blood pressure problems, and will probably go to Embrel since I was having good results with Humira. I've heard good things about all three. Also, since you are free of meds, specifically narcotics, you may want to try LDN. Several people have had good results with that, and it's new enough that you may not have tried it. Getting a Dr. to prescribe it may be a bit of a challenge, but from what I hear it is worth it.

I sincerely hope and pray that you find a way to feel better. I think you have taken the first step on that path by seeing a rheumatologist. The first time I saw one, many years ago, was like a miracle had happened.

Keep the Faith!

#321696 - 12/31/08 09:12 AM Re: Desperate after 24 years, terrified of meds. [Re: Orch]
swim2lakes Offline

Registered: 12/30/08
Posts: 70
Loc: Fingerlakes, NY, USA

Hi Steve:

did tne anti-tnf's CAUSE the ms?

does it help with "the flu" or the pain?

they TERRIFY me... and so if they also terrify you, how did you wrap your brain around it enough to convince yourself to do it?
so glad you can run. I am in a wheelchair for anything over 25' and cannot stand long enough to make a salad.
swimming gets harder and harder, but i have no choice, i HAVE to swim. You HAVE to run..

#321697 - 12/31/08 09:27 AM Re: Desperate after 24 years, terrified of meds. [Re: Tamara]
swim2lakes Offline

Registered: 12/30/08
Posts: 70
Loc: Fingerlakes, NY, USA
OMG, Tamara, steve, et. all..

THANK you for replying. For the pep talks, for the advice ALREADY on this board and for that to come. the thoughtful, frank and quick replys have brought me to tears and have made me feel somewhat less alone.

This is NOT like me at all, as i hate the "touchy feely" websites and prefer science when reading other posts. AH HA.. maybe i get it now and will be more tolerant.

I am so depressed and frightened and feel like such a burden. My hands have gotten so bad that i cannot use my wheelchair to even get out and get basic groceries right now. I think i have gotten used to being homebound and the BIG WORLD out there makes me anxious. I think i just kept falling downhill and this winter put me over the edge. SOmetimes the depression really worries me.

i think i need to follow the advice to actually KEEP the appt with the rheumy.. the thought of giving ONE MORE HISTORY to anyone is a huge psychological hurdle.

THese days i go to my PC and cry and he tells me "Take hte lyrica" or "take the cymbalta" or take the ssz and then i say ok, i go home and don't take it for fear of feeling worse. Hanging on by a thread...feeling like a nutcase..

it appears taht there are ppl here who will help me navigate this re-entry into The Medical System, as my aging parents (late 80's ) who have ALWAYS been my rocks are too worried about me and having their own challenges these days. Seeing my wheelchair all these years is hard on them, but the details at this point would break their hearts. Friends love and worry about me, but this feels so huge and complicated and i do NOT like to constantly rain on everyone's parade.

thank you thank you thank you.

with gratitude...

#321698 - 12/31/08 10:00 AM Re: Desperate after 24 years, terrified of meds. [Re: swim2lakes]
Michelle70605 Offline

Registered: 11/14/07
Posts: 6269
Loc: Louisiana
Hi Swim, it sounds to me that after spending so much time in isolation, you may have developed agoraphobia or social anxiety, I have a friend that suffers from the same thing, after years on Zoloft, she was switched to Lexapro and the difference it made in her life was amazing! The change in her was almost instantaneous, it will be a tough decision for you to make but it may help you make the neccessary adjustments that will allow you to get back in the social groove, so to speak, without the anxiety, so that you feel comfortable attending your doctor visits....then you can get the medical attention that you need. Whatever you decide to do, I hope it works out for you and we're behind you all the way....
Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF

#321699 - 12/31/08 10:04 AM Re: Desperate after 24 years, terrified of meds. [Re: swim2lakes]
Marcat Offline

Registered: 11/08/08
Posts: 82
Loc: Ontario, Canada
Hi Swim!
Welcome to KickAS. Hang in there!
I think it would definitely be helpful to keep that appointment with the rheumy. There are about 5 doctors that I have been seeing over the past year while this has been getting sorted out (I don't have a firm diagnosis yet), and 4 of them are amazing. (One is a total knob that is only interested in patients who have an easy to identify and cure illness and therefore found me frustrating and kept wanting to diagnose me with chronic fatigue syndrome to get me out off his radar screen! )
However the other four doctors that I see are really good. They seem to know so much more now than they did years ago. Hopefully you will get lucky and will get a good one that will listen. My doctors have been reluctant to prescribe meds, other than NSAIDS and Tylenol 2 or 3's for pain relief as needed. I tried NSAIDs about 20 years ago for my knees but wasn't able to tollerate the stomach problems. This time, I had stomach upset too, so they prescribed Prevacid which I take 15 min. before I eat and then the NSAID after I eat, and I have no problems with my stomach. The NSAIDs have been a really big help for me. I don't want to be on these things long term so I'm reducing my starch intake and eventually will go NSD for a few months to try it. If successful I will then try going off the NSAIDs.
The depression is a tough one too. I'm sure you've tried a lot of different meds. I used to take Welbutrin, and it made me hyper (which I liked to some extent, but then it got to be too much). Years ago I took Prozac, but after about 3 years it stopped working. These days I take Effexor, and that one works quite well for me. I've been on anti-depressants for 10 years, and at first I was very ashamed and couldn't wait to get off them. Now I'm at the point that I realize they get me through life so that I'm still able to be there for my family. One day, I will get off them, but I know that if I need them again I'm okay with that too.
Just hang in there and try to be gentle with yourself!
Marcat (Mary)

The harder I work, the luckier I get.—Thomas Jefferson

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