How much pain am I really supposed to cope with?
RD fibromyalgia awaiting blood results for coeliac disease, work full time, 2 kids a business and a dog, no help at home, all cleaning, food shopping done by me. Chief organiser etc etc . Sorry for the big moan. Just need to get it off my chest.
What is remission? I don't think I've ever had a day for 6 years which had been totally symptom free, is that normal?
Would just like to feel like I'm not soft/weak 
I think you'd not go far wrong letting your partner read your post! It sounds as though you're sinking & in nead of a little help & even more understanding. You don't say if you're on any meds but it does sound as though you're not controlled. There's no need to feel as you do, is your Rheumy appointment imminent? If not I'd see if your Rheumy nurse can help you in the interim.
Six years into RD & I've never reached remission, been pretty close but not without my ever increasing meds! People do though so don't give up hope. Oh & you're not soft/weak, you have a chronic disease which won't be controlled with, or without it would appear, the appropriate meds specific to you. You also have a few other issues/conditions & if they're not controlled either it's little wonder you feel as you do. Uncontrolled pain is awful, terrible. In fact I've only today been directed to increase one of my meds to double dose. Ah well such is life!
I hope you get the help you need & you have a word in you partners shell-like. 
Thank you so much for your reply. I take methotrexate and hydroxychloroquine with folic acid paroxetine and the usual mixture of pain relief. I really think I need to see my rheumatologist again soon. i try so hard to do everything but I can't always keep up. I have a busy stressful job, which I love but is very demanding and seems to be be making me more ill. It seems the activity is good for my brain but not my body, isn't life's hard sometimes ?
Yes, but unfortunately RD won't tolerate you trying to be Superwoman, neither will fibro or coeliac disease, for which I truly hope investigations prove negative, but unless things change all will keep reminding you that they need less stress. It's time to release some of the reigns, hand some responsibility to your partner & listen to what your body tells you. Your Rheumy would tell you the same & if you can bring your appointment forward that would help & please, if possible, ask your partner to accompany you. It's my guess he doesn't as a rule otherwise he would understand you now have limitations & wouldn't expect or allow even you to run the house & hold down a demanding job & remain well. That you say you try so hard tells me that you're struggling & the more you try the less likely you'll succeed. Please take a step back & think a while. You'll see why I've written as I have. Stress & RD don't make good bedfellows & the responsibility needs dividing!
Sorry if this sounds a bit harsh but it's time for a dose of reality for the sake of your health. Remember, we're always here if you need to release! We DO understand.
Let me start by saying you are certainly not soft or weak!
It takes a very strong person to do all that you do,I've had the this horrible RD for 2yrs and lost my job through it.
I was a fit 52yr old chap but there was no way I could've coped with work,I take my hat off to you for coping the best you can.
Having the right kind of support can make things a little more bearable,maybe a chat with your other half is long overdue?
This site is a great place to vent your frustration and let off steam,lots of kind friendly people who will listen without judgement.
I found this site after being diagnosed and the folk on here helped me through some tough times.
So rant away
You don't say how old your children are, but at any age they can help in some way and should. If you have a partner they should help as well Tell them what needs doing, don't just ask. Do what you can and leave the rest; your cleaning won't go anywhere if you don't do it! p.s. you are not weak!
Strangely (!) you don't sound soft and weak at all - you sound like wonder woman even before factoring in the conditions you have to cope with.
Random thoughts: can you afford to get help at home? What's happening with your treatment? Are you able to include some total and complete 'down time' in your schedule?
What is remission indeed! I think I'm close though we'll see what my rheumy has to say this month. My stamina's good now and that counts for a lot, it's the most important thing for me. Even so, I have to just give in some times.
Just seen your reply to nomoreheels. All I can think is 'are the DMARDs working?' Biologics can be a game changer.
So sorry you are feeling so unwell. I understand totally where you are coming from. By your not wanting to let others down you forget to place yourself near the top of your list of priorities. This is not a sign of weakness or being soft, just being sensible. It has taken me a long time to put my well being first on the long list of things that need to be achieved. I hope you are feeling a bit better soon. My thoughts are with you.
Hi Maud, well done for coping alone for so long. Like the others have said , it's now time to ask for some help. I decided I couldn't do it all last summer and sadly had to give up my job but as you say you love your job this may not be right for you. Perhaps start by doing your shopping online and having it delivered at a time when your partner or children are available to put it away. Ask your partner to take over more of the household chores or at least share them. If you can afford it, get a cleaner to come in once a week to keep on top of the house leaving you only light tidying to do in the week. When in pain it can make it hard to see a way forward. You're not soft or weak, you just need support to cope. As for remission, have you seen your rheumatologist recently? Maybe it's time for a medication review. I hope you feel better soon x
Your not soft or weak you are trying to cope with this awful condition and be super woman at the same time, sounds like me five years ago. NMH gives good advise. Contact your specialist nurse and ask for an appointment and let your family know how you are feeling and ask for support at home from them. I'm sure they would be upset if they knew how you was struggling and would want to help. I hope that the specialists can soon get your conditions under control and you are able to then cope with the stresses and strains of every day life. X
As others have said this site is wonderful for support. The one thing to remember is you are not alone. Every reply you receive let's you know this. This is a chronic disease and varies day to day I think our idea of remission is different to doctors . It is difficult to cope but support is here.
Patsy-57
Hello nomoreheels, I admire your to keep going! It sounds as if you're in need of a great big hug. Hopefully all the replies you get will go someway to show you that there are people who understand your woes. It sounds like you're desperately in need to get your med re evaluated. Biologicals can make all the difference. They enabled me to get back control of my life. I may be hard when you feel like you do, but why should you have to put up with it on your own. Be a pain in the neck for your health team. Insist on a re evaluation and get better meds. I wish you all the strength and send you a great big hug!
stbernhard.......could I have a big hug too? janni51
Maud,you MUST get help.Fibromyalgia is a serious disability,and it gradually drags more and more conditions along with it.You're not soft or weak.I've had Fibromyalgia for 15yrs now and I've been bedridden for the last 2yrs.I send you my love Maud,as a fellow sufferer you are in my thoughts and prayers.Look up "FibroHell Michelle" on U Tube .We sufferers should stick together,but you need more rest and more help.God Bless you...Janni51.
You are not soft or weak just overly challenged like most of us with these debilitating diseases. Hang in there, you've got a lot to be thankful for compared to young kids that pass at at an early age without having the opportunity to lead any type of life; just food for thought. Keep as positive an attitude as you can, it's gets you through the day...
I think there's good advice here. It is possible to get ra under control, I didn't need painkillers for years until Dr thought I was in remission and took me off meds. Now I'm looking for a new treatment with a new Dr. Biologics are well worth considering if you can qualify and it's worth talking to rheumy about it. The other thing that would help would be to try to destress and get more rest. I hope you can
Xx
Sorry you are feeling down, if you are not been assisted by your family personally I would be screaming to the roof. I have an unusual type RA and I get frustrated that I cannot help more as I feel that the fatique I suffer is always there in the background and when I want to do anything it is dictated by that moment. So itis important for your partner to realize the situation you find yourself in.
I go into a remission about twice a year and I can generally predict when it is about to happen, this is the same with a flair. Generally a remission is a reduction is the activity of the RA to some level where swelling and pain is reduced. Blood tests can generally show this although sometimes this will not be shown as such.
All depends on the type of RA you suffer from. Every one is different and some people may only get a very small period of remission. Sometimes this may be so slight as pain itself especially chronic pain is felt at different levels by each sufferer so you could put two people in the same room with the same condition and at the same stage and both will feel their pains in a different level and intensity.
A flare is when something is worse than the level you generally feel your discomfort and pain to be at. This again can be picked up by blood tests, although again it will be how the patient feels, with the discomfort and pain. You again will feel more pain and sometimes you will see changes that may not be seen when you are suffering from your day to day pain
RA is dictated by the immune system. This is when the immune system attacks the the joints, when this is why the RA Specialist will give DMARD medications to slow down the damage caused by your immune system. These medications are also used in the treatment of cancers for the same reason.
You may need to take several types of this of medication at the same time, a further type of medications have been introduced called -TNF they again are taken to reduce and slow damage to your joints
Blood tests are taken regular to make sure the blood composition is correct, sometimes it may be needed to reduce or withdraw these medications if problems are shown and contraindications are proving a problem.
The whole whole point of above is to get your complaint into remission and slow down damage to joints
BOB
My god woman stop beating yourself up and starting beating your family and the doctors up. If you have not been to Rehumy recently and you have a help line get on the phone a insist on help. They have emergency appointments. Kick and scream until they do what you want. Then get a list of the symptoms and side effects of all your conditions. Sit your family down and make them read. Then tell them if they don't help you could end up severely disabled and unable to do anything. They need to be woken up, you have if confirmed some serious conditions. Start shouting you deserve help. All the best. X
Shazbat
Thank you so very much all who have replied. I'm overwhelmed with your comments which have given me so much comfort . Well I've just got home from work and had a discussion with my husband which left me in tears ( not happy ones) but he has said he will help more and we are going to talk to my kids ( well I say kids 22 & 17)! I have decided I'm taking a step back or I feel I will end up in an early grave. Those grim thoughts of not being here keep arriving but I will try to be positive. I've also rang my rheumy today and am getting an emergency appointment. The guilt is still there though ... Not really feeling good about this.
Thanks once again much love to you all
Thank you so very much all who have replied. I'm overwhelmed with your comments which have given me so much comfort . Well I've just got home from work and had a discussion with my husband which left me in tears ( not happy ones) but he has said he will help more and we are going to talk to my kids ( well I say kids 22 & 17)! I have decided I'm taking a step back or I feel I will end up in an early grave. Those grim thoughts of not being here keep arriving but I will try to be positive. I've also rang my rheumy today and am getting an emergency appointment. The guilt is still there though ... Not really feeling good about this.
Thanks once again much love to you all
Thank you so very much all who have replied. I'm overwhelmed with your comments which have given me so much comfort . Well I've just got home from work and had a discussion with my husband which left me in tears ( not happy ones) but he has said he will help more and we are going to talk to my kids ( well I say kids 22 & 17)! I have decided I'm taking a step back or I feel I will end up in an early grave. Those grim thoughts of not being here keep arriving but I will try to be positive. I've also rang my rheumy today and am getting an emergency appointment. The guilt is still there though ... Not really feeling good about this.
Thanks once again much love to you all
Leave the guilt where it belongs......in the bin!!!
I know exactly how you feel, I am struggling myself with a similar problem. BUT I know it's impossible to be the person I was, and I have to understand my limitations, and live within them
So please be kind to yourself, the family are grownups, and should be prepared to help you for a change. I know it's hard, but you can't go on as things are.
Best wishes, (I'm better at giving advice than doing it myself!!!) M x
Plus what you can't do then don't do. Don't kill yourself cleaning up or doing the washing. While your still doing it even though it's killing you your family will carry on in the same old way. They will wake up when their favourite top isn't washed or a meal not made. Tell them you can't and wont do it. They will soon get the message when it impacts them. Good luck
Hydroxy Not Strong Enough. mattcass
Clips out tomorrow and it can't come quick enough
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