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Inflammatory Arthritis (undifferentiated) (nonspecific) ANYONE OUT THERE WITH THIS BEAST TOO?

Posted , 8 users are following.

pusheen
pusheen

Interested in talking with someone, anyone with this condition. Any luck with dietary changes? Exercise? Massage? Feeling rather isolated would love to swap stories of coping.

0 likes, 15 replies

15 Replies

  • steve43628
    steve43628 pusheen

    Posted

    Hello Pusheen.I have it on my left hand,which when you are a guitarist,pianist,and musician,lyracist is the next nightmare to losing your fingers in ; say a car crash.So yes.Isolated is a good description of yours.I wont try the Sulphasalozine because of the prehibitive side effects.Hydroxtcloroquine gave horrible sied effects so am trying cider vinegar at the moment.3 TBS a day.Tried Boron before but no change.The cider vinegar is said to disolve the arthritic crystals.No change in movement yet,but I would say the pain has diminished some.I'm not getting that pulsing pain where you shake your finger when it shoots through you.Not found massge helps,although I do use comfrey oil on the joints just in case.Have thought of changing to a non red meat diet,but mine came on about 2 years ago,and I don't think it would make a difference when the rest of my body isn't to bad.Well.I say not to bad te he.....10 ops on right shoulder,no ball socket in there,,reconstructed right elbow bone smashed out of skin,right knee,2 crushed vertebra in back,broken coccyx, tennis and golfers elbow on left arm etc Anyways I will keep you posted if I come up with anything that might help you.It is a horrible place to be.Feeling isolated!  sad Hope I can keep you company at least.

    • DaisyMay101
      DaisyMay101 steve43628

      Posted

      Hi, I was diagnosed with IA almost 4 months ago. Mine was caused by my Crohn's disease. I'm on sulfasalazine and it worked like a miracle drug for the first two weeks but it no longer works. I have bilateral joint pain in: both hips, ankles, all my fingers, wrists, knees, elbows and I even have TMJ. I have a lot of stiffness in the morning where it feels like I will fall over from my feet being stiff and not flexible to walk normally. I had bad side effects from the sulfasalazine for the first 2 months: headaches, acid reflex, dry mouth and a spacey feeling. It all went away thankfully. I've tried different diets and I really wanted to stay on the raw/vegan diet as I was drinking green smoothies all day but it sent me into a major Crohn's flare for weeks and my stomach distended by 10+". I'm also type 1 diabetic so the things I can eat for Crohn's causes my blood sugar to spike and the thinks that help my blood sugar, make my Crohn's worse. I'm really in a pickle with food but lately I'm on the FODMAP low res diet which has greatly reduced my Crohn's symptoms and IA symptoms. I'm also vegetarian since age 10 and mostly vegan for the past year. I avoid ALL nightshade vegetables as they are really bad for arthritis. I have joint erosion from the IA in my feet but they only x-rated feet and elbows so I may have it elsewhere. I too have felt suicidal in the past as inflammation causes depression. I went on 50 MG of Zoloft (not without its own side effects) and it took my depression away. I'm a 56 year old female and I too feel so much older. I can't imagine living in so much pain for another 20 years or however long I live. 😩 I haven't been able to exercise in months as I also have severe fatigue from having three autoimmune disease. I had to beg my MD to send me to a rheumy but she argued with me for three months that all my pain was caused from osteoarthritis. I finally forced her and she rolled her eyes and angerly typed in a referal. Turns out I don't have OA at all. Needless to say I changed docs.

  • kay72736
    kay72736 pusheen

    Posted

    G Morning.  I was diagonsed with As, no response to the standard of care, so I have OA or DDD and Facet joint syndrome and sacriliotis.  I am on pain meds...but the best is staying active, long stride walking and stretches (physio) also in the pool when possible, some basic yoga.   By the end of the day i feel 100 years old (54)(sorry to those pain free 100 year  olds out there I take my hat of to you)  but after a nights rest I have some go in me again (riding in a car is hell and so is carrying not much at all).  There are so many Arthritis, the end result is the same =PAIN...so exercise helps with the head, muscles and bone repair (I have Osteoprosis in my spine).  Hope you can find some movements you can enjoy that are good for you and a big YES to massage, but no minipulation. best wishes.  Also Tens machine is ok and ice now and then.

     

  • catgoh92
    catgoh92 pusheen

    Posted

    Hello may I know what signs and symptoms you have to be diagnosed with this?

    I'm 25 and I have been left undiagnosed for 2 years until recently so form of IA.

    Been on sulphasalazine for 3 months now taking 2g/ 4 tablets a day.

    I would like to know if you share similar problems to me

    • pusheen
      pusheen catgoh92

      Posted

      elevated blood work, CRP and ESR; pain/inflammation in symetrical joints,   rheumatologist also asked a lot of questions, so I assume the responses also led to the diagnosis.  I am happy to help in any way I can catgoh92

      I am currently felling MUCH better!

    • catgoh92
      catgoh92 pusheen

      Posted

      I am not sure if I am better. After I start taking the drugs, it seems like my blood test all came out within the normal range of my age. But the pain never really did go away. If I were to walk a little bit more than usual, at night my knees and foot joints will be painful, red and slightly swollen. 

      But recently my rheumatologist suspected it to be caused by flat foot that results in OA rather than IA because I dont have the typical symptom of IA patient. 

      Why is arthritis so hard to be diagnosed? TT

    • pusheen
      pusheen catgoh92

      Posted

      Do you mind sharing all of your symptoms and blood test results? And all of your symptoms? Is your pain on both sides, like both knees, both wrists? Can you get a second opinion? If you do have Rheumatoid Arthritis you need to get on the meds. asap to prevent joint damage. Is your dr. thinking you might not have IA or RA and have Osteoarthritis instead? I have done a lot of my own research, however, it didn't take very long once I got referred to a rheumatologist to figure out mine was a type of IA...they just don't have a specific name for it and my rheumatologist said it doesn't matter the type as they are all treated with the same medications.  

    • catgoh92
      catgoh92 pusheen

      Posted

      I dont have the blood test resutls with me. So far the pain majorly comes from the knee (sometimes both/one side) or somewhere nearby the wrist. Especially after walking a lot or jogging (the pain will come the next day). But sometimes the pain will come without me doing any strenuous work at all. They took Xrays for me and found out my synovial fluid content is slightly less than what it should be which leds to me doctor thinking it might be Osteo. But generally I am not a sports person, so I could not think of reasons for me to develop Osteo at all (No major fall/injuries either).

      I am also suspecting the sulphasalazine is making me lose appetite and feeling down. So the doctor said I can try to stop the medication on my own for few months to see if changes since my disease is not active. And true enough I am getting my appetite back and feeling better. And I feel even with drugs or not the flare still comes. The only drug that helped me the most is Celecoxib that I have been taking when I am feeling very painful or I am ready to go for big workout.   

       

  • lynn96582
    lynn96582 pusheen

    Posted

    Hi I have this so called imflammtory arthritis. I have tried acupuncture and massage. However the good feel factor does not last long. I also feel quite isolated as I can no longer work and miss the company. I have good days and then it flares up without warning and the pain just seems endless. I'm so glad I have my staffie dog pebbles here with me. There's only so much daytime t.v. a girl can have. Hope you feel a lot better soon and remember you are not alone. Lynn

    • pusheen
      pusheen lynn96582

      Posted

      I hope you get relief soon, the sulfasalazine has worked well for me, although it took a really long time to do so. Keep trying until something works.
    • lynn96582
      lynn96582 pusheen

      Posted

      Hi there. I have been on sulphasalize for two months now. I keep getting flare ups and then have to take steroids. It's a vicious circle. The nightime is the worse. At the moment I have pain and swelling in both hips so I'm constantly using ice packs. What a life. It can get you down but what can you do. It's the cards your dealt! Hope your doing ok. It's a damn beast of a disease !

  • steve43628
    steve43628 pusheen

    Posted

    After my rheumatologists had offered me hydroxychloroquine,methertrexate,and sulphazalazine.All with serious side effects.I have been trying the natural root.Not much success with most.but early days still.Only on 3rd day.I might have hit upon something.My fingers are still stiff and swollen,but the pain has gone down.Liquid pectin.It apparently lubricates the synovial membrane,and grape seed extract also may be worth a go.Being I'm a guitarist and piano player I have been desperate with this inflammatory arthritis.Near suicidal at times.I feel at least hope again.Hope this helps.It's a horrible condition isn't it sad

    • pusheen
      pusheen steve43628

      Posted

      There are risks with sulphasalazine, but it is considered the least harsh as compared to methotrexate etc.  I also felt that desperate; mine was in every joint in my body except my ankles, wrists and elbows. I couldn't live that way. Both my mom and grandma suffered from this condition and both went into decades and decades long remissions. I'm hopeful I will be able to wean off this at some point soon. Wishing the same for you and Lynn and ass sufferers. I am trying a diet as well in case it was caused by a food sensitivity. I'll look into the liquid pectin and grape seed extract, thanks and hope it keeps helping.

    • lynn96582
      lynn96582 steve43628

      Posted

      Hi Steve. This imflammtory arthritis is an absolute beast of a disease. I have so much pain in my fingers and hips. I'm on sulphasalize too but keep getting flare ups. Like you my fingers are so stiff but fortunately I'm not a guitarist! At least your music is a distraction for you. Think I will give the grape seed ago. It gets you down that's for sure. But remember your not alone . All the best . Lynn

  • DaisyMay101
    DaisyMay101 pusheen

    Posted

    Hi pusheen,

    I responded to you and Steve below. How are you feeling now?

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