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  1. #1
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    Default Just waiting!!

    Hello and first of all I want to tell you that my thoughts and prayers are with all of you.
    My story started last Aug (09) when I started having achilles tendon issue in left leg. I had just started
    hydrochlorothiazide for mild blood pressure issue. I had been taking this for about a month when my pain started
    after a run. Pain lasted about 3 days and then went away, so i started running again and guess what pain came back.
    Then about 3 weeks later I started having posterior tendon issue in same ankle. Then about 2 weeks later I start having
    the right ankle does the same thing just not as painful. At this time I had been to orthepedic and said nothing was inflammed
    and did not see a problem, just strained and told me to take 1600mg of ibuprofen per day. I did this for about 2 weeks and then
    stopped. I have never been a medication person, I also stopped taking hydrochlorothiazide after a month due to thoughts of gout
    due to this drug. Well then I started having pain in both wrist, lower back, knees, and neck. Well my father in law (doctor) told be
    i needed to see a rheumy. So I went 3 days later and doc told me I have reactive arthritis and all blood work was normal. I felt relieved because this usually will go away. Well then 2 weeks later I had flu shot and allergy shot and went home to mow my yard
    that afternoon and my neck go burned on the sides which i never burn I have always tanned very easy plus this was september and already had a great tan and only 75 degrees out! So called rhuemy back and he sent me to dermatologist, they did biopsy and
    said no lupus just photoxicity, and will go away in a few months, he said cause was ibuprofen/aleve. Well a few months have passed and still have some sun sensativity in which i wear sunscreen everyday due to florescent lights bothering me a little as well.
    I still have mild pain from time to time and also have what looks a malar blush but mine is under the nose and nasal folds as well
    so I really do not know if this is malar or not dermy never said anything about it. I have been back to rheumy 2 times since and
    blood work is still negative for all auto immune items. my energy level seems fine its just shocking how all this has happened in the last 8 months. Just very scared its the real deal and will not go away like doc says it will. I have 2 girls 5 and 7 and a loving wife who look forward to taking our 5th wheel camper out all summer long, what happens if i can't do that? I do not mean to be petty compared to what some of you have going on, but could this be something brewing. Thanks for any input

    Donnie

  2. #2
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello Donnie,

    Welcome to WHL. Your symptoms are a bit of a mystery. I'm not sure what exactly is going on with you. When you mention the blood work being normal, did this include an ANA test? Ibuprofen and NSAIDS like Aleve (Naproxen Sodium) are indeed linked to phototoxicity in some individuals, so the sudden sunburn rather than tanning makes sense. The best thing I think you can do is to keep up with the follow-up appointments with the Rheumo, and possibly seek a second opinion as well. What is often times unclear to one specialist, is quite clear to another. Someone with a fresh perspective could help you find an answer sooner than later.

    I know what you mean about not only wanting, but needing to get out and enjoy life. Be it your camper, or my sailboat and kayak, it's a fun family activity that quickly becomes tradition, and you hate to miss out on it. I don't know where you live, but here in Maine, summers can be short, so I try to get out at every opportunity. If you are having sun sensitivity problems, you can still enjoy an active outdoor lifestyle. You will need to learn some "shade discipline", as I call it. I have my wide brimmed boonie hat, spf50 waterproof sun block, and a lightweight and light colored long sleeve shirt with me at all times. I also stick to any and all shade I come across during my daily outdoor activities. I have both SLE, and MS, and the sun can cause me to have a Lupus flare, and the MS is aggravated by heat, but I'm able to navigate my little corner of the North Atlantic despite it. I get alot of joint pain as well, and I just have to go easy on the bad days, and push myself on the good ones.

    Rob

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    Rob

    Thanks for your input. I live in KY and our summer are hot and long. Both of my ana's were negative and a bunch of other blood work. I will keep you all in my prayers
    Is there any meds to help the sun sensativity? Thank you again for all your help

    Donnie

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    Donnie, sorry to hear about your runaround but as you know this is a hard one to diagnose. I would definetly recomend sun block as apposed to sun screen. I wish you the best for a positive diagnoses of something that can be cured. Jim.
    Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulations, that we may be able to comfort those who are in any trouble, with the comfort wich we ourselves are comforted by God. 2 Corinthians 1:3

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