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reactive arthritis

Posted , 4 users are following.

susan84637
susan84637

Hi I was diagnosed with reactive arthritis in February after being ill since last October. It all started with really bad flu which I had for for 4 days then my right hand swoll up ,doctors said gout then rheumatoid arthritis which I was gutted as I'm a hairdresser and thought I'd have to end my career after 17yrs 😣.after months of Worrying I saw a specialist and she told me I got reactive arthritis it's left me with my right hand wrist won't bend at all ,it keeps me awake at night the pains awful when I work coz it contast use of my hand I feel unwell most of the time, tired, sick with the pain I never heard of reactive arthritis before will I always feel like this ??

0 likes, 20 replies

20 Replies

  • sparkle1
    sparkle1 susan84637

    Posted

    Hi

    What drugs has the specialist given you?

    Is the swelling in your hand going down or is it just the same? Have you been given night splints? How are they treating you? And sorry to ask but are you overweight? How did the rheumatologist diagnose you? Blood tests? X-rays? MRI?

    • susan84637
      susan84637 sparkle1

      Posted

      Hi .I be given painkillers and advised to take ibuprofen but they play hell with my stomach so I try to not take anything unless I'm in agony .yes I got a night splint but the pain still wakes me up through the night ,the swellings gone but it's left my wrist full of inflammation in my right wrist hence why it won't bend at all .no I'm not overweight in fact I've lost 2 stone since I've been ill .I've had all tests x rays etc I'm waiting on a steriod injection now to see if it eases the wrist at all .I just feel so ill nd tired all the time is this normal ??
  • sparkle1
    sparkle1 susan84637

    Posted

    Hi 80% of poeple get over this but it normaly takes a year in my experience. However, 20% dont. If it was me, then i think you shudl be asked to be referred to a top hand surgeon. Dont panic!  THe best surgeons in my experience will NOT want to operate but they tend to be attached to very good hand therapists and will also be able to be much more informed on what is going on in the joint.  You may need better splints; you may need to go on stronger drugs to halt the inflammation to protect the joint. The injection may help but i would not have one personalyl until i;d seen a really good surgeon.  Voltarol will be better than ibuprofen to rub on it a nly 5% gets to the tummy compard to taking oral tablets.  GO on a non-inflammatry diet and make sure you are eating tons of veggies and anti-oxidants - i mean tons e.g. 7 veggies a day, lots of greens... buy a decent veggie cook book to try and encourage yourself. You need to give your wrist all the help it needs to stop the damage by eating the right vits to give it every chance of healing. Cut out wheat, dairy, alcohol, red meat. Lots of fruit and veg and fish.

    ​You will not get better unless inflammation is cut down.  a good hand therapist might also use ultrasound to try and lower teh inflammation. Where do you live?  You need the advice of a good hand surgeon.  If anywhere near Berkshire, try Chris Khoo. Super guy. He'll give you solid advice.   The injection is to lower inflammation but i would do everything in my power to lower it before having one.

    ​Warmth in morning brings blood to the joint to try and heal it. Ice at nighttime means the blood will flow away from joint, taking crap with it. Try everything - diet, splints, ice, voltarol, hand surgeon advice. THey are all first port of call. I;d also ask Rheumatologist if you shoudl be on antibiotics to try and clear the original infection but its probably long gone and has left ongoign inflammation in the joint. If you fell you;ve tried all that, then the injection might work - personally i'd do the above first and always get 2nd opinion on injection. 

    ​Hope this helps

    • susan84637
      susan84637 sparkle1

      Posted

      Hi thank you for your advise I shall take it all on board nd definitely try the diet as I'm not eating tidy at all at the moment never thought it could be that .I live in south Wales area but will definitely ask for another hand splint I try anything as i feel it's over taking my life atm
    • sparkle1
      sparkle1 susan84637

      Posted

      hi if you live in south wales, ask to be referred to someone like David Shewring who is a specialist hand surgeon at Cardiff
  • Anon
    Anon susan84637

    Posted

    hey susan sorry to hear you have not been well.  celebrex helped a fair bit but you cant just rely on drugs because there is no cure but can help you recover by reducing inflamation.  if you can get the inflamation down then get the joint moving. I am suffering reactive arthritis for 10 years and it gets better but can come back. I always have it but no where near as intense. when I was able to excercise and lift weights again I got better but never cured. I  injured my wrists from boxing.  I had sore wrists from heavy impact and the pain lasted 6 months atleast. before that I was punching the bag and never had problems. This Reactive arthritis seems to attack whatever it wants too for some reasons I do not know but I obviously punched the heavy bag to hard and it caused flare-up. I was just drying my hair and my neck went stiff and stuff. Try not to provoke it but keep on moving or excercising without making yourself worse. Sometimes you just might flare up for no good reason, so try not to get upset about it. It will make you worse being stressed. My right wrist now clicks. Its very wierd but symptoms for me have always changed and gotten better. My lower back was the worste for 2 years. I couldnt bloody sit down , it was hell and nobody understood. So if you can find a very good rhumy and hand speacialist. Sparkle answered everything very well but make sure if you get injection go to a good doctor to do the procedure. I was scared as hell but went well. I felt better within 3 days. I am probably getting another in 2 months because it worked so well. Try to avoid injections though if you can with oral medications. Go to a good rhuematologist. different antiinflamatories work for different people. If you get stomach ulcer go back to doctor. Also make sure you do the blood tests because anti inflamatories can have side effects. Good luck and I never knew people in the same state were dealing with this. Go to moore park PRP imaging for injection. Hes bloody good and all the surgeons next door. I think its cause they do footballers so they get the best. I noticed very good doctors in the north or heart of syd. Do get second opinions.
  • Anon
    Anon susan84637

    Posted

    Sorry I thought you lived in new south wales not South waleswink but yeh try to find good doctors and do your research because I have waisted time and money going to many speacialists. The very best doctors ussually have extensive biography or international experience with renowned surgeons etc.
  • Anon
    Anon susan84637

    Posted

    a good accupunture (no needles) or  (TENS) could help inflamation. I know it helps myself in combination with western treatments. You need to see what helps. Some treatments may take a few weeks to notice results. I have noticed if I rest the joint as much as possible from movements that irritate it. But sometimes everything can irritate it then thats when anti inflamatories help. Hope this helps but sometimes time will heal best. Symptoms will just go away or ease so in the back of my mind I know I will eventually get better from my current symptom hopefully. I have frozen shoulder from dislocating shoulder for 6 months now( lost mobilty and have pain) . Reactive arthritis has begun again, so I got injection and antiinflamatories. I might go get some accupuncture this week. See if it helps. SO just try different things. My pockets seem to be empty when I get flare-ups from all the treatments. be careful of people making you worse. Dont do anything your not comfortable with because a physiotherapist pushed on my spine. It flared up in my spine. Thats when I got real bad and couldnt sit down. It jumped down my neeck into my lower back like an explosion. I instantly couldnt sit down for years and was hell. I had pain pretty much everywhere as well but the lower back was so bad it sent pain into my stomache. My organs were all inflamed including diaphram/chest. the symptoms were endless but I got better. my symptoms are less severe that is sure
    • susan84637
      susan84637 Anon

      Posted

      Thank u so much for ur reply it good to talk to people that are going through the same thing I was beginning to think I was imaging all this pain .10yrs arghhhh 😨 that's scary how do u cope? I've had enough after 6mths.im going try the diet to reduce inflammation my job as a hairdresser I think don't help as it's constant use of my wrist so a lot of pressure on my joints too .I have awful neck pain and back pain they x rayed my back but couldn't find any thing .the doctors gave me gastro resistant capsules now do I can take ibuprofen for pain as it was upsetting my stomach bad .I've already refused 1 injection already as I didn't feel confident with having it as I've had mixed advice on steriod injections .I was very active now I just want to sleep when it flares up I feel it's taken over my life nd there's no end .I'm hoping the diet will help 😊
    • Anon
      Anon susan84637

      Posted

      Its not scarey at all when you start to feel better. I found it hard to cope cause I couldnt sit, everybody seems to have something that bothers them in one or 2 specific areas at a time. So hopefully your wrists will improve over time but I totally understand your difficulties because you cut hair and need your wrists. Try meditation or mindfulness techniques if it really gets tough. It sounds stupid but we become very sensitive from our illness sometimes. So meditation can really help because we have become so sensitive. It could help relax all your musclles too and improve mind. They honestly could help because there is actual evidence on these techniques helping. The problem is that meditation needs to be done everyday for atleast 20 mins. even if you start thinking about other things and then refocus to your breathe. It will train you. Now the benefits of meditiation go beyond our illnesses and improve our mind health. Mind and body are connected. You need something to take away the inflamation.  It took me another couple of years to improve with excercise and being more active with anti inflamatories/accupuncture. Anything that reduces nflamation to get me moving with minimal pain.   you can only do a certain amount oif injections in a year i believe.  My muscles just won’t relax from the dislocation. The injection really did work well, I was scared also that I was going to react to injection.

       I got stomach ulcers like yourself from naproxen. Did your stomach ulcers feel like a washing machine and pain in stomach?. I have never really taken ipburophen just panadol for headaches. For some reason panadols always stop my headaches that come from my neck but I try to not take them too much. Make sure you drink enough water too. I get dehydrated easily now and sometimes my underarms are itchy so try different deodorants. There are chemicals in that crap that effect my skin. I really do hope diet can help you. I am going to a dietition to get food elimination diet too.

      Chronic fatigue was very dangerous for me at one point driving. So dont drive when you get this tired please. I would get so tired for 1 hour everyday at about 2 o clock for 3 months. I dont get it anymore. It is very strange and difficult to deal with. I was at work and fell a sleep in front of my computer. I thought it might have been food. Do you get a metallic taste in mouth? I sometimes have had this

    • susan84637
      susan84637 Anon

      Posted

      Thks for your reply Jay

      I've had a appointment for an injection at the end of may today I'm hoping by then I won't need it but I think that's wishful thinking .I get very tired too thks for advise on not driving yes it's very hard I feel really old some days even though I'm only 44 😣.i also have bad stomach pains also no appetite I have to force myself to eat sometimes. Yes I have metallic taste in my mouth also very dry mouth .when I was diagnosed with reactive arthritis they just gave me a leaflet to read but never told me about all these other things I never ever heard of it b4 crazy wot the body does when u got an infection 😷

  • sparkle1
    sparkle1 susan84637

    Posted

    hi,

    ​I think if you have a metallic taste in your mouth you shoudl return to the GP and ask them to consider if you have Sjogren's Syndrome and to rule it out, as it would require slightly different treatment. If they dont know much about it refer them to this recent article in the BMJ (British Medical Journal) as this site tends to block any useful references to other web sites even though this is the leading medical journal in UK. I will put the link on the next reply so if they block it you can still ask! I;d want to rule this out as the treatment is different. Did you tell GP you had metallic taste in mouth as this is a significant clinical sign?

    • susan84637
      susan84637 sparkle1

      Posted

      They just seem to think everything is down to reactive arthritis .can I ask if ur a doctor ?
    • sparkle1
      sparkle1 susan84637

      Posted

      Im a medical researcher.. i pull out the articles from round the world in teaching hospitals and Unis and clinical trials to present to some of the leading guys in UK as they would not otherwise have time to look at everything which is being currently worked on. I kind of precis it all so they can know whats going on.  

      ​I'd let them know about the metallic taste as it is a significant sign and in some cases signifies an auto immune issue which needs to be treated with different drugs quickly. No harm in asking. They can test for it and it might help you a lot.  The Rheumatologists tend to work on process of elimination and if you prod them they tend to eliminate other things faster than if you dont prod them. Just make sure you have told them about your metallic taste. If you have, no probs.

       

    • susan84637
      susan84637 sparkle1

      Posted

      Ok thank u I will definitely ask it's good to know these things thank u so much
    • Emis_Moderator
      Emis_Moderator sparkle1

      Posted

      Hi Sparkle,

      We do not "block useful references". If you include a link it will go for moderation but will be approved if it is a to a reputable site like the BMJ. If you do not want to wait for moderation you can forward the link via Private Message while the post is in moderation.

      Regards,

      Alan

    • Anon
      Anon sparkle1

      Posted

      hey I have gotten metallic taste when I got my totally new symptoms like after 5-7 years of reactive arthritis. I got chronic fatigue too but went away. I had even bleeding gums and itchy eye at times. I was getting wierd feelings everywhere like I had aids(it was crazy) can this be Sjögren's Syndrome . I also have had swollen underarms. I believe they are called lymph nodes. Is this a sign of reactive arthritis or something else. My new gp who is starting to fix me is very good. So I can get him to check. He said looks like I have developed some sort of syndrome but I wasnt too sure.  I have too many issues so he said we will treat the reactive arthritis in the next few weeks.Sjögren's Syndrome most prevalent autoimmune disorders, striking as many as 0.5% of Australians.

      thanks for the info. i

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