Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 Hi, this is my first post. Please forgive my English. Two years ago I have had prostatitis, cured with tons of antibiotics without any improvement. Pelvic pain never disappeared from that day and sitting turned to be a big issue. 6 months ago I started to suffer feet pain (heel, plantar and Achil's tendon) + joint-muscular pain at wrists, elbows, hands, hips... + minor eyes irritation + burning tongue. Did i forgot something? Well I am also loosing may hair... but thats not due to RS :-) Feet pain is very frustrating. Sometimes walking is really painful. As you may imagin, having sitting and walking troubles at the same time is not that funny. Recently I have seen 3 reumathologist: RS was suspected from symtoms description but, following the examination they said that at present there is no evidence of artritis. Pelvic pain has been very bad. Now I have various sources os constant pain. It influences the quality of the life but I can live without pain killers and to other people eyes I live a nornal life, working hard with a high resposibility job. I'd love to be back as I was 3 years ago, but I will be happy if simply nothing will be worse in the future. Worsening is my nightmare.... Now... some questions: - I have seen several posts re diet, but I was unable to find a list of 'not recomended' food. Any suggestion? - Exercize: I love sports. Bike first. I cant bike or run anylonger. I tried swimming but it seems bad to my joints pain. Is that common or i can try again? - Stretching: if I stretch my calves, the day after my feet hurt much more. Again, is that common? - walking: i haven't yet understood if walking or resting is better to feet pain. well... sorry for being that long with comments you have heard 1000 times. I wish you all the very best. Ciao . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 Hello Ciao , I am only 1/2 italian, & 1/2 Prussian(German). I have had the exact same experience. About 9 months after I noticed the same symptoms as you have, I got to a Rhuematologist, that studies Arthritis & Reactive Arthritis, at Hopkins University each year. The diagnosis was Reiters Disease (RA). I have been treated somewhat haphazardly by the Urologist & Rhuematologist with antibiotics. I have had 3 complete remissions of the symptoms in the last 4 0r so years. The treatment was antibiotics. The 1st was doxycyline, the second was Biaxin, the third in February with Ciprofloxin. Each time the urologist stopped treating me after 1 month. In my case the symptoms came back each time & the antibiotic did not work that well when I started on it a second time. I have been at the mercy of the urologists treating only the immediate prostate symptoms, & not the long term treatment of the Reactive Arthritis. I swim, & if the pool is not above 84 degrees Fahrenheit then it aggravates the arthritis. I may try to use the Arthritis Foundation Pool - it is kept above 90 degrees Fahrenheit. I hope this helps you. Greg Krueger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 > I am only 1/2 italian, & 1/2 Prussian(German). I have had the exact same > experience. Hi Greg. Thank you for the reply Which part of Italy is your mum from? Could you tell me stg more re your ReA? - age (I am 41- married-2 kids) - did you suffer prostatitis before ReA? How long? - have you ever been tested positive to any bacteria-STD? Otherwise, how did they selected ATB? - i'm HLA B27 neg. - which are your current symtoms? Here: sore tongue (never stops), plantars and heels pain + Achilles tendons+ hips pain+ other minor joints pain (+ 2 years old pelvic pain...) - do you take medicines? Do you feel now better or worse than first ReA period? Thank you in advance if you have the patience to reply. Kindest regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Dear , I noted that you mentioned sore tongue as one of your symptoms...I have RS for many years now...I also have the tongue problem and it gets severe when I have flares. It's like a red area will form and then spread and it will have an irratated area around the edges as the inner parts heal. I usually have to go on steroids to get rid of it. However, with this current flare I'm having (3 mos already), I have this soreness (sometimes severe) down my throat as well making it hard to eat. I also have apthous ulcers in my throat according to the ENT. Just curious if you get a sore throat too? Also, do you get minor salivary gland swelling on your soft palate? I get this and I hate it and it can be painful because it usually occurs when the rest of the mouth is sore or getting sore. Have you found any remedies for the tongue and/or throat if you experience that too? I am really suffering right now... Thanks.. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Hello , I have been meaning to respond to your post for quite some time. However, I have been very busy with work. Any way, did you watch the Giro? How about that Petachi? Who is your pick for the Tour? When I read your post I felt like I was reading my own story. I too am a cyclist. Infact I just started amature road racing before my Reiters started to get really bad. My initial pain started in my left hip after a bike race last august. It persisted all winter at varying degrees of discomfort, from mild to extreem. It was a very long process to get to the diagnosis of Reiters. I started taking indocine for the pain and it seemed to help. In the spring I started to train again on my bike ( I too had to stop running due to pain.). Things were going pretty good though. I was able to ride several times a week with minor pain. After a couple of races I decided to increase my training. This is what pushed me over the edge. I was unable to walk for several days due to pain. I started Enbrel shortly after this flair. I think that it is helping. Unfortunatly, I have not been able to exercise very hard because of pain. I am able to ride moderately, however pushing it is out and so is racing. I have pretty constant pain in my feet and ankles agin some days are worse than others. They say that Reiters can go into remission and that is what I am hoping for. As far as diet goes, I have tried the no starch diet reccomended on the kickas.org website, however it did not seem to help. The best information that I have found is in an Arthirtis Foundation Guide to Alternative Therapies. It is availible on the Arthritis Foundation website. Well, good luck to you and I hope that you are able to get back on the bike soon. Try Enbrel it may work for you also. Keep in touch it is nice to talk to some one with a similar life style. You can email me personally at howardw@.... Cheers Quote Link to comment Share on other sites More sharing options...
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