Hi everyone, just needing to offload as I'm feeling rotten...as well as the PIP situation, I've also been taken off Humira injections while I wait to see the orthopaedic foot specialist on 14th. But the pain in my feet has just gone off the scale today, but have no choice but to limp on and swallow ibuprofen. Wasn't helped when I had phone appt with my GP this morning, and when the subject of me seeing the foot surgeon came up, GP said "What do you think HE can do for you?" a bit like he hasn't a clue about the joint damage, the extent of the pain, and that no medication has helped up to now! I felt like saying "well you've been fully in touch with what's happening to me for nearly 3 years now, and you've had the letter from my Rheumy about this referral - so why are you asking stupid questions??!" But of course, his dismissive attitude has "stuck" in my head all day, and what with the pain being so bad, I'm worried now that maybe I'm wasting everyone 's time seeing this foot guy - maybe it's a different drug I should be trying instead? And it'll be months before I could get started on anything anyway, and I'll never stand the pain if this is how it's going to be! Then I read all the "gluten makes inflammation worse" posts, and started beating myself up that maybe it's my rubbish diet that's caused all this in the first place! Could glutenintolerance really cause inflammation in my feet so bad that the joints have been damaged?
I'm so miserable, does anyone have any words of comfort?!
Will probably head to bed shortly so don't feel you have to reply tonight!
Thanks, S. x
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Please don't beat yourself up unneccessarily, a healthy diet , probably mediterranean type, is often recomme nded for people with RD, but I am sure we all have spells when we eat rubbish, especially when we are down. You are not to blame for having this wretched disease!! You certainly haven't caused the damage to your feet!!
Everyone is entitled to their beliefs, but I get really irate at people who imply that if you cut out gluten / nightshade veg / red meat/ dairy/ etc etc it will make your disease go away magically. If that were true, the NHS would definitely not fund the expensive drugs some of us take!!!
As for your gp, I really can't understand why such insensitive unprofessional people go into medicine.
The truth of the matter is that you have had a very stressful time, you have had all the problems of your PIP appeal,your RD is not controlled, nor is your pain, and you need a bit of t l c, not to be treated in such a manner.
I am a bit puzzled about you being taken off humira because of seeing the orthopaedic surgeon, I had to stop my biologic when I actually had my ops,but not before I saw the surgeon. That certainly won't help you .
I also wonder if you have seen a good podiatrist, I have been helped with my foot problems, and after one foot op, am working with her to try and avoid surgery on my other foot.
I do hope you have had a good night's sleep, and that things don't look as bleak now. Look after yourself, and don't lose hope. I'll be thinking of you. Maxis xx
Thanks so much - if it wasn't for the support on here I'd be totally lost! Humira was stopped becos the scan showed it really hadn't made any difference to inflammation, even after 20 weeks, and even the pain wasn't a lot better, so had indepth talk with rheumy, she thought best to discontinue it, see what foot surgeon thinks, and if necessary try a different biologic after that. Probably abatacept. Have had all the help that podiatry can give too. Slightly better today thanks! Sheena x
Hugs for a start. The drs don't know how to treat us to be honest because they are not rheumatologists darling. You will have to be pro-active in your health and if you want to explore what the foot specialist can do you tell the dr and why. The drs that treat us can't be specialist on everything and some drs do know more on some subjects and others on other subjects. Your dr was not the most polite and he was out of order being so dismissive of you,speak to your practice manager and tell her you want that referral to the foot specialist and also tell her that the dr upset you with his attitude and you have enough health problems without the dr treating you like that. xxxxxx
Hi I hope you are feeling better this morning. I think all the time about what I am doing wrong but you can't beat yourself up about it and worry is probably one of our worst enemies! You have been referred for a reason and you need help so wasting people's time is not an issue you should worry about . I too am struggling with feet so totally understand and am looking at seeing a,podiatrist. It just never ends does it xxx
Hope you've woken up after a decent night's sleep feeling a bit more assertive about getting the help you need. I think it's a good idea to consult a foot surgeon - even if not for an op now then at least you'll know the options. But like others I don't quite understand why you've come off Humira?
Maybe a different diet would help your inflammation a bit - but you'd still have the disease and it wouldn't repair any damage done, so forget about it. But if you have the motivation to change a bit,I do sometimes think we are great at self sabotage as we set the bar so high that there's no way we'll ever achieve it and so end up going back to bad ways. So personally I feel that trying to improve diet & exerciseneeds to be taken slowly & gradually and it's a bit much to expect to go from rubbish diet to the perfect one in one step. And there is no one perfect diet for everyone. So start just by something manageable - replacing a chocolate biscuit with a banana and then feel proud of yourself for doing so.
Hey you! Go ahead and see the foot surgeon because he may just have the trick you need and your GP will have to take responsibility for his own off days.
Yeah a cleaner diet may take the edge off things but it's a flaming cheap cure all that the NHS aught to look more into if it can do all that some claim... Having said that I know that I've let too many refined sugar products back into my life lately and am in pain againmmmm time to tidy my own plate up again.
Hope things look up for you soon
Ali
You sound like me - when one thing goes wrong, then another, it all snowballs and I top it all off with an unhealthy dollop of self-blame.
I'd obsess about the GP's attitude too. However I've noticed that this happens so often, sensible, caring doctors say something callous and hurtful out of the blue. You know him & are the best judge, but I'd be inclined to put it down to over-work and stress. And if you really do not think that might be an explanation then complain. It's not that I'm keen to get him off the hook, just that I know I'm going to have this disease a long time and am going to hob-nob with NHS staff on a regular basis for ever (oh my, I'm getting depressed here). So I need to insulate myself against these occasional barbed comments etc., I need to understand the conditions in which these people work I guess.
I bet the food thing has been on your mind for a while. I doubt very much that a better diet could have prevented damage to your feet. But I'm sure it would boost your health in loads of ways. I think helixhelix's post is spot on ..... if you want to change something about your lifestyle, do it with conviction but gradually.
Here's me giving advice. Please bear in mind that if my foot pain was off the scale and I had a frustrating PIP situation I'd probably be too crazy & distraught to post at all. I hope you slept well and that things improve soon. Good luck with it all.
Yes, yes, yes! Gluten intolerance is more than enough to cause your foot problems!
Please try to stay off gluten if you possibly can. If you cannot do without then have a look for some of the lovely gluten free recipes and gluten free grains and flours. Enjoy making and exploring these awesome ingredients, buckwheat flour , coconut flour, Amaranth flour, Arrowroot flour, Banana flour, Brown rice, flour, Hemp flour, Teff flour. There are loads more too!
White bread is one of the four white devils!
Milk
Sugar
Bread
Salt
These "foods" are responsible for the majority of health problems in today's society. Eliminating them will drastically improve your health, pain levels, vitality, emotions, abdominal bloating, and energy.
Eating processed pseudo foods of any kind will result in negative reactions in the body like allergies for a start. These foods also deplete you of nutrients due to them literally having no nutritional value.
Your body has to expend energy when it assimilates food, eating these nutritionally dead foods robs you of that initial energy output needed to assimilate and remove this dead food.
Some foods cause the body to use 90% of the energy they provide in their assimilation alone. This bad cycle of poor food choices results in further deficiency. You are literally eating yourself dead by exchanging all of your bodies resources for toxins and useless wastes.
Not to mention that white bread, cakes, biscuits and the like all contain dead inorganic calcium that builds up in the joints.
As I have said previously in this forum, the body shunts this calcium to the extremities, because your body cannot use inorganic calcium! Your feet are one of the first destinations, as are your fingers and toes...Why do you think arthritis attacks these joints the most!
The body will do all it can to protect the internal organs. It thinks nothing of sacrificing your feet or fingers if it has to, it is a survival mechanism. You need to stop putting those foods in and start work on removing the calcium deposits that have built up. Removing bone spurs is quite easy if you do this and I have had great success with that through using this method.
Make a food diary your top priority and fill in some of the trackers.
Data is your light in the dark. Follow it!
You can do this on your phone in an app or on your desktop, there is no excuse for not doing this if you are really suffering.
If you negate this task you only fail yourself and whilst this sounds harsh it is a reality because we have all of the information we need to beat this thing so anything less than total all out attack is your choice.
No one ever does a food diary and it is the single most effective treatment in all of this. Be warned! Certain people rely on your ignorance and lack of effort to make their living, do not be one of those people!
Fill the trackers in as you cook your meals.Make time, it is vital to your recovery.
Your first responsibility is to not have pain and suffering in your life. xx
It doesn't take long and is the ONLY way you can begin to pick the complex strands of this disease apart. Auto immune disease is caused by many different issues from toxicity to mechanical damage, emotional stress, food intolerane, leaky gut and on and on and on.
You have to get hold of all of these causes and tick them off like a check list. Writing this stuff down is the only way to do it because your head is not a filing cabinet and shouldn't be used like one.
If you use a brain for anything it should be to watch your thoughts and not let fearful nonsense like that garbage that comes out of the daily news or television into your life.
Your body will respond negatively to stressful information sources and literally switch on the fight or flight response. Causing a release of cortisol and adrenalin which keep you in fight mode.
These are deadly toxins to the body!
You need to get away from that stuff and meditate, get real quiet and peaceful because the body switches on the repair mechanism only when you are in that quiet mode. It can't do it in fear? It's desperately pushing your blood into your limbs and looking for any immediate threats it may have to deal with, it is not concentrating on healing you.
Healing happens in the quiet moments.
And back to the feet.
The legs and feet are very poorly drained by the lymphatic system. Gravity is against you big time! Unfortuantely the lymphatic system doesn't have a pump to work against gravity, like the circulatory system has the heart.
This means you are the pump! Or more accurately, exercise is the pump you use to get the lymphatic fluid moving.
If you don't exercise vigorously your immune system (which resides partly in your lymph) will stagnate, fill with toxins, inorganic calcium and so on. You need to get moving. Cycling is the best way I have found and if you can't afford a bike sell everything you have and buy one! That is how important this is.
Get a rebounder too and force yourself to use it as soon as you wake and before you go to bed.
Your feet are literally being turned into a garbage can, so lets get those things cleaned up from the inside and get that lymph moving.
Even if you only pump the lymph you get results because your circulating the fluids and disrupting the cycle of the attack. if the fluid doesn't move you are powerless to disrupt the attack that is happening.
Exercise will also help you to sweat and remove these toxins so it's a win win. The lymph is part of the glanduar system so you automatically get a two fold benefit through the toxins being released through the glands, skin and breath.
Magnesium sulfate footbath's are awesome too and help to draw out the toxins as well as increase the levels of magnesium in the blood.
This is also wonderfully relaxing and puts you in repair. Magnesium is essential to bone building, calcium assimilation, and every other process imaginable. You are likely deficient and magnesium is super safe so it's always good to add a bit extra.
Your aim should be to get off ibuprofen or at least reduce it because it is indicated in being bad for cartilage production. Try to cycle between all the different pain killers like asprin at different times to minimise the risk of reliance on one thing.
Serrapepetase and eggshell membrane will have you on your feet in a week but you will have to get hold of all of the stuff I have put here or you'll end up back on this forum asking for help.
Problem is you'll also be further down the disease process and may end up being past help. That's when your in the hands of the surgeon. :/
You are not at fault for having a poor diet, you have been mislead by marketing men like the rest of us.
Here is your chance to change and be better.
Have a great pain free day and remember that health is a state of mind and body working in unison.
Hit every pathway hard!
If you need to chat privately please don't hesitate to pm me.
I was eventually refered to the rheumatology podiatrist after several years of constant foot pain because of my rheumatoid arthritis. I have got some damage to joints and had corrective surgery for a dislocated toe. The most useful advice from the podiatrist was to wear skechers shape ups which take the weight away from the ball of the foot. Now my disease is better controlled with different medication and I am relatively pain free and can walk miles as long as I have the right footwear on Dont give up hope!
Oh my poor lovely. I hope you've woken feeling things are a little less grim. About your GP, he patently doesn't know about the damage RD can cause feet, after all he's not the specialist so why should he but that doesn't excuse him for his reaction. As Postle says maybe it's down to overwork & stress but still it's not professional. Had I been spoken to in a similar vein it would have knawed away at me too but I think unless similar happens again I'd try to put that one to bed.
Your thoughts about gluten may hold water but honestly, I think you've enough to concern yourself with just now, what is done is done, there's little point worrying about it. Get the PIP reconsideration out of the way & then revisit your eating habits? New year new you type of thing. Maybe start off by seeing what you react to rather than going headlong into taking lots out from your diet. That's something for another post, we need you to be in a happier place before messing with your diet I think.
Are you not taking celecoxib any more? They may be a better alternative to work on your inflammation than ibuprofen if you have some.
I hope you have a productive appointment on the 14th, do let us know how you think it went.
Sending you hopes that your pain has eased somewhat Sheena & hugs to.... well, hug you! ((x))
You poor love. I totally agree with everything Sylvi has said. I hope you get some respite from your pain soon. Sending lots of hugs for Christmas and a painless 2016 x
Hi ya hun good news i won my rethink i really hope you get yours dont give up god loves tryers and i got both componants they refused me like you got my fingers and lega crossed took 6 weeks so hopefully january 2016yours will arrive... i know its a long wait but im hoping you get it as ive got FEET problems too... dont give up hope... look at me.. i was like you disappointed but hun they will LOOK AT IT AGAIN please dont give up hopexxxc from mexxx
I am so sorry you are having a bad day. If your medication isn't working then they will take you off the Humeria. My nurse said that if I don't have any luck with the Humeria they will take me off and put me on another one. I expect that is because they are very expensive. Don't get down you will get there,tomorrow is another day.
Oh dear the it must be me, I've done this to me etc etc, well you haven't! you like me have a disease. We did not ask for it nor deserve it but we got it. My heart is sore for you as it seems so unfair. But I do have Celiac so don't eat gluten and I can promise you it has made no difference whatsoever to my RA it still hurts! lol.
I hope today things are not so dark and you should look up the condition Mortons Nuroma as well, I have this and its like walking on glass, been operated on twice and will have it done again in new year. The pain is unbelievable and seems as well to be linked with RA, but I only found that out recently (surgeon told me) as my painful foot story began 20 years ago but the RA did not appear until 3 years ago. I'm really so to say only surgery really worked for me, but was a private patient so it was not the struggle to get it sorted out. Please accept my heartfelt sorrow for your situation but things can only improve so stay strong and be patient.
It was the RA consultant who found the Celiac disease as I had low B12 and pernicious aenemia as well as low bit D, to be honest although I have a great GP the tests done by the consultant revealed a lot more than RA and now that has been treated the RA has less impact. I will only add that you will feel better and be in less pain eventually and stay positive.xx
I forgot to add if you have any suspicion that gluten is giving you some very unpleasant tummy pains etc etc then get tested before stopping eating it. Its vital to be eating gluten to get the right test result as its auto immune and the antibodies switch off if your not eating it. Don't know much about it but it is not hard to avoid but is expensive and not recommended I'd kill for toast and a donut. lol
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