Bit of an update not been on much

Well had appt with rheumy week ago and we had a long discussion about stuff. He started off saying he thinks a lot of my pain is fibromyalgia and sleep apnea until he had a look at my blood test results, really high inflammatory markers and changed his mind about that assumption. I aslo told him that I have a fairly high pain threshold so do not believe I have fibro. He then went on to say he has no idea what I have, it may take years before it shows up in my blood work as a high enough + ana to figure out what I have and is going to call it Lupus related inflammatory arthritis as it would be less destructive to my joints. gee thanks. He really really wants me to try mtx but I am so anti it after my sister's experience and others on here who say how they feel so sick all the time, I just couldn't work full time if I felt like that. Anyway long story short I said Ok lowest possible dose and if it makes me sick and unable to work I am stopping it. So he says Ok let me look at your liver function results to see if they have improved, hmmm liver function still bad so now that is out. So I am trying steroids again for a month and so far so good, haven;t crashed my car this time. Yay. I have also been diagnosed with wolff parkinson white syndrome, a heart condition and had a cardiac ablation a couple of weeks ago but cardio had to stop as I went in to atrial fibrillation and they had terrible trouble getting me back in to normal rhythm sooo now I have to go through it all again mid May to see if they can get rid of the extra electrical pathways and get my heart beating normally again.

I am supposed to see the sleep dr in April but they cancelled my appt until June so now I am trying to get in sooner as rheumy wants to see how I go on bipap machine for the month before I see him again and just to top it all off as my calcium levels have been high for over a yer now for no explainable reason he is going to test me to see if I have multiple myeloma, sheesh is there anything else I could try on for size. I seem to spend a lot of time sitting in different medical waiting rooms these days. So that's my reason for not being so active lately I am completely stuffed after going to work all day and all I want to do on the weekends is sleep. I lead such a glittering existence these days. hahahaha Hope you are all Ok and starting to see some warm weather as I look down the barrel of winter on this side of the world.

17 Replies

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  • Wow you have a lot on your plate don't you. Your doctors don't know what to make of you. I wish i could say something that would ease your suffering. I don't blame you for sleeping all weekend,i would do as well if i was in your shoes. Question, do you need to work full time or could you afford to cut your hours? It sounds like it would be better for you if you could. I am going to send you a big hug from me. xxxxx

  • Hi Sylvi I have to work full time couldn't pay ,my rent and bills otherwise, mind you we are all about to lose our jobs so I am not sure what I will do when that happens as I am almost unemployable, disabled, over 50 female and no one even looks at people like me to employ. Yes drs keeps telling me I am a difficult case, hmmm hahaha apparently that is what I am, difficult, as my body will show a bit but is a bit shy on showing the lot so I can get a definitive diagnosis and treatment. Therein lies another problem multiple drug allergies. Oh well I will just keep plodding along and hope for the best.

  • Sadly thats the same for all of us isn't it. When i got made redundant in 2009 my Remploy advisor told me i was too ill to work,i didn't want to give in,but i really didn't have a choice to be honest.I haven't worked since sadly. To be honest i couldn't do a day of work now even if i wanted to. I would love to be able to work,but it is not going to happen sadly.Well my friend keep working as long as you can,because as you say when you lose your job you will be unable to get another one. It is age discrimination isn't it when you think about it. xxxxx

  • Very ageist here and I will probably have to declare bankruptcy if I lose my job. Too many debts and no income I will lose my car and everything oh well just another fun part of getting older and sick. I will have to go on unemployment so not sure how I will even pay the rent.

  • Do you live in the UK or elsewhere?xxxx

  • i live in Australia. New government and they are cutting jobs all over the place. very scary time.

  • I bet it is scary for you. I can't comment on your system over there as i don't know anything about it,i am sorry to say. But i will give you a hug.xxx

  • Thanks Sylvi. I will just have to roll with the punches not much else I can do.

  • Hello. If you really want to avoid MTX, which I certainly don't blame, you might want to try The Paleo Approach by Sarah Ballantyne (www.thepaleoapproach.com). The idea is that AI is a result of gut dysbiosis (leaky gut) and nutrient deficiency. The premise is to rid your diet of gut irritants (grains, legumes, nuts, seeds, nightshades, refined sugars, etc) to allow your gut to heal, and replace that food with nutrient dense whole foods (ie including organ meats, sea vegetables, etc) to increase your body's ability to absorb some of it. This can also be done in conjunction with medication, but will work better without, especially if you're not already taking anything. If you're nervous about what to eat, phoenixhelix.com has been doing weekly Paleo Approach (aka paleo autoimmune protocol) recipe roundups on her site since November, so there are lots of great ideas to work from. I feel like I will try anything to be better and rid myself of these toxic meds (though full disclosure, I am still on Humira, a heavy dose of MTX and strong NSAIDS, which is definitely hampering my ability to quickly heal my gut but I think in my specific situation it would be foolhardy to ditch everything cold turkey, especially when the NSAIDS are working!). Best of luck!

  • Also, even though your health situation may look dismal right now, know that AI disease isn't going to just knock you down forever until you die. You CAN continue to have a good quality of life. Focus on you and your healing process for now, rather than resigning yourself to a life of incremental misery. I'm in flare right now (far less than the original flare), but had a whole year of running, weightlifting, ziplining, and indoor rockclimbing between flares! Life can be good, but like the airlines say, you need to put on your own oxygen mask first before helping others! When my mobility was greatly reduced, I was in a lot of pain, miserable and depressed, it felt like eveything was out of my control. I decided what i could contril was my diet, and focuses on that. I've gone from a size 10 to a size 4 (North American sizing) since then and can at least feel happy about that, even if I can't turn the key in the lock or unbuckle my kids frim their car seats. Outlook is important! Good luck!

  • Thanks Karen 77 I am afraid I am an unusual case and have been doing this for a couple of years now. I cannot take a lot of medications, e'g nasaid, antibiotics etc as I have had some incredibly bad reactions. I take plaquenil but it isn't doing much. I do have a good outlook on life, if I didn't I may have given up and walked away by now after years of frustration. You are fortunate to be able to take some drugs that work for you unfortunately I am in a difficult situation where by I cannot tolerate much. I actually have a good diet and have looked at the paleo diet but it is not for me, way too much meat, eggs and dairy (neither of which I can't eat). So I just have to keep persisting, trying new drugs and hope that something will work. Who knows. hahahaha :)

  • Just so you know, there's no dairy on the strict paleo diet. Also, the focus is on eating lots of veggies, not just meat and eggs! It might be worth taking a look. Www.thepaleomom.com Meds aren't working for me. I think I felt so great last year because I went gluten (grain) free, reintroduced red meat (focusing on high quality) and added in fish oil and vitamin D. I think the meds I am taking are actually a contributor (along with stress) to my current flare and am working on my diet and stress management techniques, because those are things I can control.

  • I am already on fish oil and have only just reintroduced vit D after a break to see if it made any difference as my calcium levels are so high. I think I will stick with my diet as it is balanced and works for me. I have used elimination and have a very narrow field of food I eat, I do eat a lot of veggies hardly any grains. I just have an unusual and difficult body and will have to stick with what works at any given time as it is constantly changing. Glad the paleo diet is working for you as anything that you can find that works is a bonus.

  • Thanks! It's good to be able to hear from you and your experiences. We're all unique but it's helpful to know where others are, and where they've been. I hope you get some relief soon.

  • Hi Karen

    The Paleo approach is something we’ve come across on this forum before, but I feel I should just give a word of caution to people looking at using alternative approaches, as overall the evidence on the treatment of RA supports the use of medication such as the standard DMARDs like MTX and biologics like Humira, (both of which you are on of course).

    You mention in your post that the Paleo approach works best if people are not on medication, but we would not recommend anyone stopping their medication and if they have not started medication yet they should be aware that there is a lot of good evidence to support starting these drugs as early as possible. Going back a few years, they used to wait for the disease to get to a certain level of severity before they would start treatment with these drugs and a lot of people experiencing significant joint problems today had this delay in treatment, which has strengthened the evidence for starting the drugs early to avoid joint damage.

    Having said that, we realise how important it is for patients to feel that they have some control over their condition. As you said in your other response, you looked at what you could control and there is good evidence that dietary changes can help, though mainly the evidence supports help with symptom control, rather than slowing the progression of the disease, as the drugs can . We have information on diet and other forms of self-management, which may be of interest:

    nras.org.uk/about_rheumatoi...

    If anyone is considering stopping their medication, we would advise discussing this with your rheumatology team first, to ensure that you are making an informed decision. People are also welcome of course to contact the NRAS helpline for further information (Mon-Fri, 9.30-4.30 on 0800 298 7650).

    Kind regards

    Victoria

    (NRAS Helpline)

  • Thanks Victoria. I am going to stick to meds and keep trying.

  • Thanks Victoria. I certainly agree with what you are saying. I am not looking for a quick solution, first off, and second, I definitely do believe that the meds have made a huge difference for people. As you note, I want to do as much as I can. I know that we're all different, each case is unique, but I am trudging along and willing to do what I can, hoping that diet + drugs will provide me (and others) a better quality of life. I won't risk my health, nor do

    I want others to do so, and if you read The Paleo Approach, you'll see that Dr Ballantyne definitely recommends working with your rheumatologist and NOT ditching any medication cold turkey. Thanks again!

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