Have you got RA extras?

Hi all,

I’ve not blogged for quite a while that’s not because I don’t like you or fed up with you all, I have read with great interest what’s been happening, added a comment here and there; you’ve had some interesting people blogging recently.!!!

We seem to have developed into a really nice community with people who care and have time to or make time to reply to those questions that we come up with in the middle of the night, I have had an annus horribillus and want to wipe 2011 from my mind. But to do that I also have to put these thoughts to paper, then print and rip them up, therefore getting rid of any gremlins and nasty thoughts.

I agree whole heartedly with all that has been said about preaching and selling on this site.

So have you thought as I have that the side effects of RA are sometimes worse, more painful, make life more difficult and generally p** me off.

Fibromyalgia

Pain all over, Fatigue ,Brain fog, Trouble sleeping,

Exercice difficultés, Headaches, IBS,Jaw pain, Multiple sensitivities

Anaemia

chronic fatigue, weakness, dizziness, headaches, depression, sore tongue, sensitivity to cold (low body temp), shortness of breath doing simple tasks (climbing stairs, walking short distances, doing housework), restless legs syndrome and loss of interest in work, recreation, relationships and intimacy.

Chronic Pain Syndrome

mainly because of the spine ops.

Fatigue, Sleeplessness, withdrawal, weakened immune system, moody, anxiety, stress.

Sjogrens Disease

the most common symptoms of Sjogrens syndrome are extremely dry eyes and mouth that have lasted for at least 3 months and are not due to medicines. You may have itching and burning in your eyes and your mouth may feel as though it is full of cotton.

You may have noticed how all these symptoms seem to appear in each of the illnesses, they are all treated pretty much the same way. There are others that seem to pick on RA as well, let us know about them please.

In aid to try and make things a bit easier for me last December I had a couple of pints of Ab+ that seemed to make a difference.

I’m back on Humira weekly and still having MTX injections weekly. Since the flare last January 2011 I have not been back to work, I had the carpal tunnel op done in March I came off Humira then for 6 weeks, went back on it without too many probs. The RA seemed to be OK then July comes along and I had Cauda Equina (couldn’t wee.) then I had the 2 spine ops 1 the 24th August L3-S1 decompression with a bit of metalwork put in. Then came home but back into hospital in 3 days as my legs had started to go numb, but the pain within my legs and lumber spine was horrendous I had another op on September 4th this time they had to drill out a piece of hardened calcium that had built itself a cosy nest restricting my nerves at L4-L5.

.

I don’t know too much about Anaemia and I don’t want to pester my GP about it. She has prescribed tablets to be taken 3 times a day and has referred me to see a gastrologist. The truth is I feel 10 times worse on the tablets and i'm finding it really difficult to take them. My tiredness is now so extreme it affects my daily life. My Rheumy consultant has put me up for another couple of pints as the appt for this new guy may take a while.

I’ve always had so much energy. I constantly feel nauseous and i’m sick at least a couple times a day. I’ve lost all appetite but i’m thirsty all the time often craving for fizzy drink s {which I then later regret} my co-ordination has completely gone and have done myself injury as a result. I can’t concentrate and often get confused holding conversations.

Hubs says I've always done that :)

I have a constant metallic taste in my mouth which is awful and i’m forever brushing my teeth to try and get rid of it. It never helps though. Some days are better than others which I can’t understand. My wonderful hubs understands all of this and try’s to make things easier for me, I have become a recluse not being able to drive and walk any distance I couldn’t even get to the bus stop without either falling or stumbling.

Have any of you got the same combination of syndromes,

I expect it to be loads of you.

Love to you all

Tricia P

15 Replies

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  • just a thought on the metalic taste in your mouth.my mum had breast cancer so had cimo and radio therapy and also had the metalic taste constanty and she just had suger free chewing gum and said it was a great help.

    hope things get better soon

  • Hi Phil,

    Good idea I have pastilles that increase the saliva, plus viscotears and an oitment to put in before I go to sleep.

    I wonder if its the MTX i use the injections as I'd had a bad reaction to the pills, but heyho, I'll get some gum and see if that helps thanks.

    Tricia Pxx

  • Oh tricia, i can so understand where your at. I'm glad 2011 is over. I was told in august that i had fibro as well. Regarding your eyes,i had my tear ducts cauterised to stop the fluid going down to my nose and throat. I have to say it has helped my dry eyes,this i would recconmend. I had a knee replacement done nearly 3yrs ago and that has been a disaster to say the least.

    Since xmas i've had a chest infection, so in the last 5 weeks i've missed 3 doses of mtx. Now i'm not sure if the mtx is causing my breathing problems or not.I spoke to my rheumy and she is going to speak to my consultant and see what he has to say.

    So i sympathise with you. There are a lot of better qualified people on here who are better able to advise you. Me i will just listen and see if i can cheer you up some how.

    Take care

    sylvi.xx

  • You poor thing Tricia you take care, really hope things improve for you .

    Alison xx

  • Tricia that is just so awful, i hope they can get a combination of things to counteract the ra and the other ailments. Is there any light at the end of the tunnel for you.

    I would bother your doctor, i think most of them are happy to advise someone who is ill on the different medication and diagnosed diseases.

    I really feel for you and hope you get sorted asap.Am sending positive thoughts that 2012 will be the best of years.

  • Numerous doctors - including an orthapaedic who confirmed there was nothing he could do as the bones were healthy

  • Hi Tricia, really sorry to hear about your suffering. I also have Sjorgens which leaves my mouth and eyes very dry and uncomfortable. I use Optrex Actimist Eye spray which is very good - you spray it onto closed eyelids and it seems to work and relieve the dryness. Also, dry eye drops can be bought from the chemist. I normally use Viscotears.

    Re the metallic taste in mouth, I had this after a breast cancer - seems to be caused by anaesthetics which can take months to work out of your system and also put me off red wine for years as that seemed to increase the metallic taste. You have had a lot of anaesthetics in the last year or so which could be the problem. You could try a good mouthwash - I find Sensodyne is very good or Corsydyl which is slightly antiseptic. (Or chewing gum as someone on here has suggested - anything which encourages the flow of saliva - and also get your dentist to check your mouth and teeth).

    Shortness of breath - I get this as well but as I have heart trouble have put it down to that (and also need to lose weight as well!). It would be worth getting that checked out with your rheumy consultant. He may decide to do a chest x ray to rule out any lung problems which MTX can cause apparently.

    Trouble sleeping and tiredness affects everyone with RA. I find that pain keeps me awake or wakes me up when I try to turn over at night and I just can't get comfortable at all. I don't have fibro so far as I know but my shoulders are the worst at present and have had a big flare up this last week in one shoulder and now the other one has started. Also both sides of my jaw have seized up at different times and also getting endless mouth ulcers as well. I am sure it is all side effects of this rotten disease and also the meds we are on too. You have had such a bad time this last year that your body is desperately trying to cope with it all.

    Anaemia means you are not making sufficient red blood cells to carry the oxygen round your body - the tablets should help in the long term. Speak to your GP about the side effects as she may switch you onto another one. My mum suffered terribly from anaemia and had to take iron tablets for years and they did make her sick from time to time.

    I find the MTX despite injections, still makes me sick occasionally or I cough for no reason and then am sick. Did mention that to my GP who seemed to think it was part of having RA. Have they given you anything for your stomach?

    I take Lanzaprazole and there are variations of the same which protect the stomach lining from all the tablets we take which irritate. You can also get anti sickness pills which dissolve under your tongue and they do work.

    I also keep some pepto bismol in which the pharmacist recommended and a spoonful of that sorts out the nausea and sickness very quickly.

    I am a bit concerned about the constant thirst - have you had any tests for diabetes? I think you should mention the thirst to your GP who can do a simple blood test to check.

    The main thing is to rest as much as you can, forget work and everything else = you are the only person who matters. Your Hubby sounds like a brick and very supportive. But do see your GP and talk over all the problems - tell the receptionist you need a long appt so you are not fobbed off with 5 minutes!

    Thinking of you my lovely friend. Take care. Love LavendarLady x

  • Oh yes the metalic taste using happens after taking my MXT as lasts about 3 days. It does not matter what you eat or drink it does not go.

    Tiredness well that is the worst I liken it walking through mud. Although it does have a positive effect on my 19 year old daughter - it gets her out of bed

    Your husband sounds wonderful, mine gets so guilty he cannot do as much as he used to but his comments and making me a cup of tea just as the right moment goes down a treat.

    I definatley think you should get the contast thirst looked at - go to your doctors

    You take care and keep going xxxx

  • I also have permenant taste in mouth not sure if it methotrexate or rituximab side effect i find gargaling with oraldene and airwaves helps a little xxx

  • Re tiredness have you had thyroid checked, a lot of people (inc. me) are hypothyroid and you should definately have a diabetes check if you are constantly tired and thirsty.All of these are autoimmune probs. Take care Beth :))) x

  • Yes I'm with LL and Beth - the thirst and tiredness could well be diabetes related - I had myself checked for this last year and was okay but have a family history of type 2 so will ask for this to be done anually - but thirst is a classic symptom.

    I'm also hyperthyroid (the underactive one) and that's easy to remedy too with a few tablets -yes sorry that does mean more tablets I know:-( - but these two things should defintely be checked out by your GP asap.

    I wasn't checked out but decided myself that living this far north for 24 years I was probably vitamin D deficient so take tablets now daily - no noticeable improvement yet but it's early days. I haven't got half the things you talk about - poor you - although I have noticed my eyes are a little dryer than they were but assumed that was ageing rather than RA or MTX. I did recently have 3 weeks of gallstone pain which I thought I recognised as that but it's gone away again now -GP said to go back on Omaprezole and the stomach pain seemed to vanish with that thankfully. I agree about 2011 wholeheartedly.

    Last week my fingers went bright white and I had a day of shivering that has not been repeated but that might be Reynauld's syndrome others here have told me - another side effect of RA so that's one you haven't mentioned having at least? Also the funny taste - I haven't had this since starting MTX but when the RA first kicked off last March/ April I did have the most disgusting taste in my mouth for over 2 weeks that I just couldn't shake off? I thought at the time that this might be something called Pine Mouth from eating dodgy (past sell by date) pine nuts but that doesn't sound quite the same as your metalic tast which reminds me of the moment I knew I was pregnant all three times so may be to do with hormonal shifts perhaps but I would get the diabetes and thyroid checked out before blaming the meds for it.

    Take care and I really hope you get some answers to all these other additional things soon so that you start to improve. TTx

  • Hi, i have had sjogrens for over 20yrs and i agree with lavenderlady about the actimist spray. sometimes i feel like plucking out all my eyelashes because the gritty feeling is like eyelashes sticking in my eyes. there is a mouthwash which isnt as drying as others called Biotene the y also do toothpaste and a mouthspray. sugarfree gum is ok but i usually rely on milky tea and coffee followed by mineral to clean my mouth. i spend most ofmy working day using the loo but i dont mind as long as my mouth is not too dry. Ditto about the thirst and sugary drinks i would get checked out for diabetes. take care and let us know how you get on xxxxxxxxxxx

  • That should say mineral water. xx

  • I would definitely have thyroid and diabetes check. As for the iron tablets i know a lot of people who have trouble taking them. Have you tried Spatone. It is liquid iron that you can dissolve in orange and it might work. I have also had to use paediatric iron syrup for one lady. She had to take more obviously but it did the trick. Worth asking

  • Oh yes, I also have Fibro & Lupus & Sjogrens. I have every symptom you have listed under Fibro. I used to get a metallic taste in my mouth after my Mtx injections, it was so strong & wouldn't go away for anything, so I went back to the pills.

    I also don't sleep well, and can never really relax. I really squirm when I'm sitting, I have to adjust often to relieve my joints & keep moving so that they won't get stiff.

    I hope that you feel better soon, Tricia.

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