ESR, MTX AND PAIN

Hey guys my first question on this site, im so hoping im not alone as i really think im going of my head, been diagnosed since 2006, on mtx for about a year now on 25mg a week, totally drained all the time its like my body is still flairing and i get very low crying ect a lot, some days is just a struggle to get though and some not to bad, been at the docs today and my ESr is jumping for the last few month around 21, 17, ect doc says this is normal ESR, im just so low cause im so sore even on my pain killers and anti inflamatries, my old doctor was fantastic but new practice dont seem to be as if u know what i mean, it was my new doc that said to join a support site so i could consult with people like myself, but to be honest i feel so tired and yucky all the time i just feel it all in my mind xxx

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  • Hi Tipper, it sounds like you may be suffering from depression, the advice from your doctor is good advice, though you may need a anti depressant just to help get you through the rough period your going through. Getting support from others who have been through this can really help and reassure you your not going mad and your not alone.

    Don't take to much notice of ESR, mine is constantly really low even through a severe flare where I can't even stand never mind walk or look after myself.

    When diagnosed you have to fight your way through all the emotions a bit like grieving after a loss in the family. Feeling of loss, anger, guilt can be overwhelming and leave you a bubbling mess for some time. You have to allow yourself to work through these feelings to help come to terms with a new chapter of your life and learn to accept that you can no longer do everything you once could.

    Have a good cry, get angry and allow yourself to feel sorry for yourself. Always remember there are many on here of differing ages, different lifestyles and different degrees of RA, we are here to support each other through the bad days and offer support/advice when needed.

    Take care of yourself and remember we are all here to listen and support you when needed.

    Beth xxx

  • Hi Tipper - I have asked quite a similar question to yours really but I'm not in so much pain all the time as you seem still to be - but I'm only about 3 and half months since diagnosis and about to go up to 15mgs MTX tomorrow. I was thinking it must be something else wrong with me other than the RA because I'm so tired and depressed off and on but not in as much pain as i've been - but now I've had 2 ESR readings at 40 and 36 today and my GP told me she thinks that my flare of a few weeks ago is responsible for the systemic inflammation and tiredness. So I am starting to understand that I can still feel bad even when not in flare and not even in that much pain. I think people here do know a lot more than our GPs about the full impact of RA. I go to 2 different GPs in our practice and the woman said today that she thought i was being brave and I felt quite proud but then she doesn't come on here and read what some people with RA experience. It's good to come here sometimes to put our problems in perspective as well as to get some support. Take care and welcome to HU - you are certainly not alone. TTx

  • Welcome Tipper!

    I'm still a 'newby' to RA, only diagnosed Feb last year and very lucky to have it under control for now.

    This site (as your about to find out) and the people on here are amazing, your NOT alone and now that you have become a member you shouldn't feel so alone again :)

    The yuckyness you describe is exactly how I did feel, I just counted the hours until bed so another day would pass hoping it would bring me relief, every day was like ploughing through treacle! Even when my esr was down I was so drained as you say that I couldn't feel any better for it.

    It's not in your mind, we all have felt the same, your SO in the right place Tipper!!

    I'm not so good at the advice bit (I'm just nosey) but there are plenty of others who are, take care and keep coming back, write a blog??? tell us about yourself??

    :) xx

  • Hwy guys thankyou so much for ure understanding xxx :)

    When im having good days I could take on the world, when its not its as if i can feel it coming on, tiredbess, sicky feeling, severe sweat in morning when i wake up, some nites i dont even sleep, just thinking oh here it comes and cant wait for the next few days to pass to feel a relief, suppose its like a routine sometimes, im normally a happy go lucky girl and do try to fight it hard, but when im down i hate it, I have been of sick from work for 2yr coming uo now and have come to the conclusion that maybe worying about my job is stressing me more, after 3 or 4 comments, ure rite Im not alone, but when ure gp is saying all is ok with ure ERS and u having all those other issues attached to RA its not easy, but hey guys thankyou so much for being so friendly xxxx :)

  • Hi Tipper. When you say Doc, do you mean your GP or the consultant? Cos I'm wondering whether you need your meds reviewed as also sounds as if the MTX isn't enough to keep your RA under control if you're still in so much pain. Yes, stress about job and depression don't help - and not having a sympathetic doc makes it even worse, but it's also important to keep nagging about the pain and inflammation. I've found that the consultant is only interested in things like pain and swelling and doesn't really care about how I'm feeling. And my GP is the opposite! But sorry you're having such a bad time, and no you're not alone -I'm not to bad at the moment but have had really bad patches too. Polly

  • Yeh Polly my GP, my old one was great sympothetic, had no prob lifting the phone or cotacting my consultant but new ones they dont seem much they can do, I have acepted long time ago now my life has changed ect Not sure I have depression thou as ev1 says im happy go lucky, but must admit i do try hide it a lot especially pain from kids, seen my consultant in Nov and he says my mtx was doing its job as ESR was coming down, when i went to docs the day he just looked at me and said try support forums but coudnt tell me what ones or councilling, tryed to tell him it was only down when i felt my body was flaring and then i bounce back again, but to be honest untill tonight i didnt think this was normall but reading this site, it seems to be normall, i just thought having low ESR ar 21 or 17 around that u shoud"nt have any pain ect or flairing but i have learnd tonite this isnt so, :) xxxxx

  • Ohhh Thanks Beth58, Wilby,TildaT,Polly u have all been fantastic, hopefully I will be doing the Highland Gig very soon, xxxx :) :)

  • Tipper,you poor love your having a really tough time of it haven't you. Well my love heres my advice, you do sound though that your depressed as others have said. See your gp and tell them how your feeling. You have ra and your body is attacking itself any wonder your depressed. Look at all the tags on here and you will get all the answers to what each name means eg;mtx,esr. I am on antidepressants, it just goes hand in hand with ra. Tiredness also the same.,As is pain in hands.

    I wish you well my love, sylvi.xx

  • I moved a few years ago and initially signed up with small gp round the corner. Seemed ok ,but then got diabetes diagnosis and I lost confidence in their ability to support me. Researched a bigger practice up the road, went to see them and changed. That was the best decision ever. I just had to fill in form. This is in Scotland. I do hope you can start to feel better

    Cathie

  • Tipper - I have no choice about the practice I attend as it's the only one in my area but there are 4 GPs in it and all have their followings I believe and they all have different skills and things they are good for. I go to one when I am looking for sympathy or need to talk on a level with someone and get things done and another when I am looking for detached advice about drugs and the disease itself - both are good for different things and maybe there is someone in your practice who would suit you better? - worth trying them all out to make sure. But if you feel they are all just pushing you away then I suggest you follow Cathie's advice and find another practice because I think GPs are very important if you have a chronic disease to live with such as RA.

    It's good that this GP advised you to come here but he should also be listening to you one-to-one and be telling your rheumatologist how things are going and advising if he feels you need to increase your medication because disease not yet being controlled I believe. The consultants only give us a limited amount of time and focus on controlling the disease but the GP needs to focus more on helping you get through this period of pain and fatigue by listening and being sympathetic to a degree.

    Mine don't even take patient's ESRs or CRPs for exactly the reason that you are showing - they think it upsets people when their readings are low but pain is still great and they certainly don't set much store by them. Reading your post I'm really seeing why they don't now. RA is systemic and can make you feel rubbish regardless of what the bloods are saying and anyway your ESR is still raised considering how long you've been on MTX and had RA - so the drugs are obviously not working for you yet. TTx

  • Ggrrrr... GPs that don't listen to people really make me mad. I agree with Cathie & Tilda - if there isn't another one in the practice that is more approachable then do try to change GP again as a waste of your energy to re-educate him/her. But if you can't then I think you really do need to try to discuss short term treatment for depression with the GP AND get an appt with your rheumatologist for your RA meds. It really doesn't sound as if your RA is controlled yet as well as being down mentally. Do you have the direct number for the Rheumy so you can phone and ask for an emergency appt with the doc or nurse rather than go through the GP? Also, do you have a blood monitoring book with your MTX so you track your own ESR? Everyone's different and as Tilda says for lots of people it doesn't mean that much, but for me an ESR of 21 would mean I was flaring as my normal is 5! What's more important is your trend so if yours started at 175, and has slowly been coming down then that's a good sign and that could be reasonable for you.

    But anyway, just keep telling yourself that you're not nuts - it's the RA that is. Polly.

  • Hi everyone, when i visited mt GP yesterday I told him exactly how I felt, sore tired ect I even broke down in front of him, My last GP was on the ball he was great, understanding and he would even move my meds around to see if it would give me better relief sometimes, i also felt he had a better understanding of RA and as stated above if anything was unto wars he had no hesitation in calling my consultant, my new docs in a small village practice where the one before was a town practice. finding it all so different, really felt like i was wasting his time yesterday, when i was only going on another docs advise that to go alternative to each of them so they could both know me and get to know how my RA was, but when i enetered i explained to him this but as I said just felt his attitude was ehhh rite well what wrong wi u and is it tablets u need, then i could just feel myself whailing up inside and my eyes filling up he just sat and staired at me and said well do u more tablets or ure sick note, when i had told him how i felt, low sore ect all i got was try a RA forum.

    I loved my last docs and cant go back as im not out of the district as they say, even asked for a letter to send for mt SEA review and he said fil in form and they will write to him if they need anything, oh an to photo copy it first before sending so he has a record.

    When i asked about my ESR being around 21 and 17 he said it was really fantastic and he wasnt concerned about it only if it rose to around 60 80, then he just asked if there was anything else honestly I just wanted to burst out crying, stood up and said ohh well then i just have to get on with it and he just smiled, just seems im at a dead end as as i said to my partner if my doc not listening then there nothing I can really do, I cant make them but dont want to come ove as im a wreck, all i want is some support and a wee drop understanding, not him pushing a leaflet in my hand for fast track back to work, my old doc said there was no way i was going back to work untill i was stable for about 3 moths just incase i was juat back then of agian and also comfortable, i explained to new doc yesterday that i coudnt cope with fulltime work in my old job, and i wasnt being lazy as i have always been emplyed also that i was draining myself before cause i was trying to cope working ft, keeping the house kids ect and trying to deal with my RA and i just dont want to go backwards, I have never been of work before and sure I will get back in the near future, Just feel there not much i can do or turn to at the min, just feel i have to get on with it to be honest, I hate feeling so down but especially when ure docs not listening, as stated above diagnose since 2006 so feel I have accepted it and been on and off the roller coaster prob just like everyone on here, but when ure new doc isnt listening, or to be honest i dont even think he has read my files then its gona be a long ride xxxxx :)

  • Hi Tipper,

    You must be absolutely furious that your GP is so useless. My GPs never want to know about my RA, they just rely on the hospital to deal with my "issues". I think they prefer people with sore throats or a bad cold. Simple things.

    Can you get to see a Rheumatologist fairly soon, by phoning for an emergency appointment. They need to sort out a better course of treatment for you.

    In the meantime, please don't worry about your ESR readings, try and focus on your pain levels. What do you take for your pain?

    I have diclofenac once or twice a day, and in bad flares I start the day with paracetomol and take 2 of them 4 times during the day.

    I use ice packs, or sometimes hot wheat bags. If you can get a little bit of control of your pain levels you will feel a bit more able to cope.

    One day at a time, don't even think about returning to work for now.

    Just one small step, then another. Find a way to learn a relaxation technique. These are many of the things my OT taught me. Anything you can do to distract yourself.

    It will get better, you will get through this.

  • Hi Phobe thanks, Im on diclofenic 3 x day, 120mg dyhidrocodine 2 daily, amitriptyline 2 at nite poaracetomal and noral dyhydrocoiine when needed if im in a lot of pain.

    My next app with my Rhemotoligist is first week in september, any other referalls was normall done by my old gp, so dont know what will happen now with thi new one, think i will call around to see about moving to be honest, just get the impression that im to much hard work for thenm and agree seems to be only interested in coughts and cols, from starting thei post from last nite, i would say im now starting to get angry about it all, lol ohhhh hope thats normal xx :)

  • Angry is really really useful.

    Please don't wait till September.

    Use your anger and phone them directly now!

    LOL

    Good luck.

  • yey, I'd phone them now, ask them to pass on amessage to RA nurse or consultant, tell them your struggling, in pain and need some help, surely they won't say no....your quite right to get angry, it's just not fair :(

    xx

  • hey guys thanks agin spoke to nurse main thing today is my knee, told her pain is quite bad even when it not swollen but it reallt sore today she was nice, told her about my other issues and im not alone it all part of RA, i to go get an appointment wthi a new doc if not happy then change doc if i find they all the same, ice and heat recomended for my knee and ure rite someone can go along witha a swollen joint and dont mean there ESR would be up or down, also u dont have to have swelling in joint for it to be painfull either I havei to take my 10 wee tablets of MXT to equal my 25mg tonight rest and see how i am over next few days to see if it helps, she gona send me a quicker appointment through the post and when i go i have to request OT or physio support from him also tell him how i feel, as for recomending forums and counselling he should have at least had a few that he would have recomended, not leave me to find one myself xxx thanks guys xxxxxx

  • Just dropped by to see if you were getting anywhere and you are! Really pleased for you.

    Write a list of everything you want out of your appointment and make them listen.

    I think OTs and Physios are more understanding than plain old GPs.

    Meanwhile, keep a little bit of anger handy, just in case!

  • Pleased you have a better result with the rheum nurse, it could be that you are in a lot of pain because your Ra isnt well controlled yet.. 25MG OF Methotrexate should hit it hard.. not sure how long you have taken this dose, but it may take a few weeks to work. ,so dont give up.. you may like some of us here have another condition called fibromyalgia as well as RA, this raises pain levels. but the amitryptyline helps with this.

    Im lucky that I have an excellent gp practice.. it seems yours is lacking patient care skills in a bad way x

    Welcome.. we all help if we can

    Alisonxx

  • I agree with everyone and if you find you have enough anger I would go back to the GP and tell him that you did as he suggested and came on here and we all said you should be getting better treatment from your GP! Honestly it makes me so cross when they can't see that RA is a serious disease that needs sympathy - suggest they go on a rheumatology course as the other larger practices mostly have been to keep themselves up to scratch! As you say you can't give someone compassion skills they've either got it or they haven't - but they could at least try to be decent enough doctors to know the impact RA can make on their patient's lives?!

    I go to two different doctors in my practice as have no rheumy nurses here. The man can be a bit like yours and I've never cried in front of him as not sure what he would do but sense it wouldn't be great. On the other hand he is interested in rheumatology and seems to know a lot about it and is a good medical doctor and not only interested in coughs and colds. The woman is compassionate and so I see her when I need sympathy or the human touch or some humour to cheer me up.

    Maybe the other doctor in your practice is better and if so suggest you stick to them? I wondered about Fibromyalgia too just from what you say about levels of pain, depression and tiredness so maybe look into this as Alison suggests. Good luck. TTxx

  • Hey summer, I have been on MTx for about a year and 25 which is suppose to be the max dose of mtx has been upped to this since last sept/oct 2011 so been on max dose for a good 5 months.

    OMG funny you mentioned fibromyalgia hun as my sister has this condition, at first they tested her for RA cause it is very strong in my family but her end result is fibromayalgia.

    partner says not in a cruel way that if my knee errupts worse tonight or tomorrow that i have to bypass the docs and call my rhem nurse,

    Ev1 seems to be saying opposite of ny new doctor that my rhemo dont seem to be under control especially being on the high amount of MTX for ages, but he keeps saying my bloods are great at the level of jumping from 21-15, I just dont know, maybe i had it too good with my old practice i was with them since diagnosed in 2006, took 2 years before this to be diagnosed as they kept pushing, they were fantastic, always supportive, and everytime i went in they were always asking about the kids ect, nothing was a problem, even sometimes when I was finding it hard, they always had a tissue to hand, I miss them so much and to be honest they had helped me to come a long way, just dont want all this undone by the new practice xxxx

  • must have crossed writing with u Tilda sorry hunnie, just with u both saying about fybromalgia and my sister having it, noone has ever mention this to me before, hahah imagine my new docs face if i went in a suggested that to him hahha he would prob have me down as patient totally lost the plot xxx

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