Frustrated, scared and depressed

Posted , 10 users are following.

On my 52nd birthday I was diagnosed with RA, with very high inflamation markers. At that point I had been in unbearable muscle pain and was taking 1200mg of ibuprophen in order to function. I was given prednisone to calm the inflamation and when I finally saw the rheumatologist, she put me on methotrexate, sulfasalazine, folic acid, plaquenil, zantac. she weaned me off the prednisone, (thank God, it messes with my moods).

3 months later the inflamation was going down some but it was still high so she added the dose for sulfasalazine and methotrexate but the methotrexate was now an injection, (l hate needles). All that has not reduced the aches and pains and flare ups.

My frustration is from not being able to talk to my doctor when I have concerns. My knee swelled up and when I called, she put me on prednisone. 1've tried inquiring about a second opinion and they want to know why.

Is this what to expect from living with RA. Pain, meds and no answers.

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11 Replies

  • Posted

    I'm afraid so. Though there might be answers. We tend to assume doctors know everything. In fact they're just muddling along, gathering a huge amount of experience on the way. And with RA it's tricky because everyone has similar but different symptoms and certainly different responses to the drugs on offer.

    She sounds like she's following normal protocol, the preds to lower the inflammation, the rest to keep everything nasty at bay. The drugs have their own dark side of course, so we must be patient and find the balance that works for us.

    Take it easy. Be good to yourself with this nasty little number. Don't let your anger at the disease and the treatment add to your mood what it's already doing to your body. Make your peace with it and love yourself.

    Then do whatever needs to be done (which will keep changing, probably).

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  • Posted

    I would say don't give in keep pushing them it's your body and your pain having said that frustration seems to be part and parcel for this group of deseases take care it will take time steve b
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  • Posted

    Kinjo

    i was diagnosed 2 years ago aged 62 and seem to have gone same route as you. But after I had gone 6 months on at least 2 dmards( sulfasalazine and methotrexate- and I also was taking hydroxychloroquine)I was put on a biologic as was still aching in many joints despite being on 7 half mg prednisolone and my DAS score was more than 5 .2 for a period of time. ( uk NICE guidelines) The next step for me was a biologic.This has made a transforming difference to my life. So there is more they can try (once they ve tried all the other stuff) 

    The prednisone should only be to tied you over while they manage your RA. Ie try new or increased meds. ( I totally agree with the effect on moods and I have only just totally come off pred after a year of biologic as needed to do a slow taper)

    Patiently press for further intervention....I think there is more they could try.......and by the way I had my swollen knee drained and a corticosteroid put in by the rheumy, which definitely helped( have had this done twice) I m sure they could do this for you even if they have other ideas about treatment before getting to a biologic.

    As Light said though, so much of this is trial and error as they try to find what will help for each individual.

     

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  • Posted

    With RA life as you know it has ended. You need to re visit your lifestyle, discard old hobbies and pastimes and find replacements. Unfortunately, Doctors and Rheumatologists know next to nothing about the condition and treatment is very much a trial and error exercise. Many have found adopting a non inflamatory diet helps greatly. Your life has changed dramatically, no need to be scared or frustrated though, your body now requires your full and undivided attention, try not to let it down! Trial and error, research, study and lifestyle changes will become extremely hepfull tools
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  • Posted

    Thank you all for your encouraging words. Life as I knew it did indeed change. I'm trying to come to terms with the fact that I can't wear high heels, dance and party. I feel like I aged over night. This was sudden and not expected. I have high blood pressure and no thyroid and thought I was done. Lol....

    I would like to look into the non inflammatory diet. The foods to avoid and what to eat. Any suggestions?

    I realize we all react differently to meds and diet but short of paying a nutritionist I'm relying on tips from people going through the same as I.

    I am trying to get as much information as possible for me and for my family. I'm the only one diagnosed with RA in my family and they are in denial and want me to drop the high risk meds and do supplements and diet. HELP!

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  • Posted

    Eliminate sugar, red meat, dairy and gluten from your diet. It's not as hard as it sounds. Grocery stores have lots of gluten free products, eat chicken, turkey and fish. Use almond or coconut milk, dairy free cheese and butter. Eat more healthy foods and don't smoke. It changed my life drastically and you have to get a positive attitude, not what I can't do anymore but how am I going to accomplish this differently. It sounds to me like your doctor has you on a hell of a lot of medicines to be just diagnosed. Try another doctor. I was on MTX and that stuff was horrible for me. I am now on Humira and I don't know if it's going to work or not.
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  • Posted

    My gut feelingis that you are letting them play "chemsitry set" with your body. Aviod ibuprophen as it will kill your kidneys.  If I were you, I would completely detox from all meds. Pick one (I am on Methotrexate) and give it time. I took 6 monhts to improve. Yes, I believe we face a long road of pain and flare ups. Get a new doctor. I can e-mail mine everyd ay and she always answers and tires to help me. I don't know what ahppens next. Neither do the doctors. I am scared and frustrated with you.
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  • Posted

    Be careful with diet, not all foods listed as anti inflamatory are!   Salmon is a good example:   Wild salmon is an anti inflamatory; however, farmed Salmon is actually inflamatory.   Good luck trying to find Altlantic wild salmon though, I couldn't    Tuna is in the same category.  To be safe I eliminated all meats: beef, chicken, fish, lamb and so on, simply because you don't know what these animals were fed on.   Google is your friend when researching foods to eliminate or include in your diet; unfortunately, not everyone agrees, for example some sites will suggest eliminating banans and tomatoes, other will suggest adding them.   Again, to be safe, I eliminated them..   Once you have settled on a diet, timing issues come into play, some will suggest one month others suggest three before reintroducing foods one by one.   Unfortunately, there are so many conflicting opinions out there it may lead to confusion.   A good start is to find a site that lists the inflamatory ratings of different foods, avoid sites titled 'inflamatory foods to avoid' and so on, they are simply too contradictory to make sense from.    Sugar has also been identified as a possible source of inflamation; unfortunately, as a diabetic it is difficult for me to avoid.   Some of the food groups to avoid are wheat, dairy, nightshade vegetables, processed foods, sugar and meat.    Good luck with that, hope you have better luck than me!.
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  • Posted

    Dear kinjo I'm so sorry for you and your story is the same as mine. I'm 54 and I've been messed around by rheumatologists for over a year now! No one believed me saying I was depressed, stressed or it was just a virus despite a positive ANCA and raised CRP that kept rising. I'm now on plaquenil, methotrexate injections that I too give myself and I'm doing better than last year but I'm not myself anymore either. My life has changed I can't do things I used to do and all I hear is that my disease is being compared to osteo! I hear just take Panadol osteo. I have refused to go back to my first rheumatologist and I'm on a waiting list for the other one. It's hard enough to deal with the painful disease and dreadful lethargy but the poor support adds to my frustration! I hear you and I know everyone says be patient it's hard to get out of bed, k, look after children and try and hold down a full time job! Arrgh
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  • Posted

    Allowing Doctors to play with you as they would a chemistry set is an apt descrition I think, but what choice do you have:   I've tried dietry changes and every alternative medication under the sun, nothing has worked - not even the chemistry set.   I suppose I'm lucky being retired because there is no way I could possible work, I can't even perform normal daily functions like using a knife to cut bread, I have trouble turning door knobs, opening jars is just a pipe dream and some days I need assistance to get out bed and dress myself.   Ibufprofen is not supposed to be taken with any of the RA medications, having said that I have taken ibuprofen myself on ocassion when the pain is unbearable, I've also taken endep which worked well.   I've heard that nembutal works really well!   This disease really sucks!
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    • Posted

      How horrible for you tony I'm so sorry to hear that I'm not that bad yet . This disease is so missunderstood and all treatment is just wait and see and then it's too late. I already have nodules forming and it's still wait and see like you said we are a chemistry set! The only relief I get is from endip but it doesn't help the muscle pain or lethargy. There are some days I just can't work and my insurance company doesn't recognise RA as a disability so they won't cover me. I'm lucky compared to you I am so sorry you have no relief! Take care
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