Autoimmune Diseases and Patience...

BrigR

Hi all!
Just need to vent a bit. I know there are a lot of threads about autoimmune diseases but mine doesn't really fit into any of them. But I suppose everybody will know about the patience issue...
I've had aches and pains since last September, first a nuisance, then interfering with work and eventually so bad that I couldn't walk or stand without holding on to furniture. That was late October and I've been off work since, tried to return for a few days in November but gave up, it was ridiculous, I paid 40 Euros per day for a taxi and was basically dependent on my colleagues to do fetch and bring for me. First lesson in patience. The second lesson in patience was getting diagnosed. My GP- excellent and most supportive btw-was completely baffled in the beginning, apart from wandering pains I had nothing to show for, no swelling, no redness in the joint. After several blood tests and other tests and trials he referred me on to a rheumatologist, that was mid November. I was so lucky I got a cancellation within a week, because at that stage my patience had worn very thin...
More patience, the rheumatologist needed more blood tests, some of them he said would take at least 4 weeks to come back, prob even more coming up to Christmas and the New Year. He suggested steroid injections and promised 4-6 painfree weeks. A week later I had the next flare up and the worst so far. Intense pain lasting for hours, unable to move. My GP upped the painkillers and at least I could manage.
I was living towards the next visit with the consultant, all he could say was that it was some kind of an autoimmune disease, that there was an inflammatory process and he could rule out a whole list of diseases, no Chrons, Psoriasis, AS, maybe rheumatoid arthritis, but extremely atypical. It started with ankles and knees, now the ankles are absolutely fine, but the knees are not...
Anyway, I've started Methotrexate now and was told to be patient- once again!!! In fairness, I see a huge difference, I can walk short distances, drive, do things around the house with lots of breaks, short grocery shopping. I have to remind myself how bad I was before Christmas to appreciate how well I am now.
Next lesson in patience- going back to work. I have the medical review coming up next Monday. I really want to go back to work, the idea of someone else telling me to be patient doesn't bear thinking!
I want normality!!!
I know that on a good (and patient) day I can count myself lucky that the treatment seems to work and I'm getting better, but other days...
Thanks for reading this. As I said, I just had to vent after a phone call to my boss about getting back to work and being told to be patient.

Graces7

So sorry re this.

"Lord. Give me patience, but not today!" is an old prayer.

Hopefully they will sort it soon... I had this kind or runaround etc with M.E also. Showed RH A one month, then not the next. etc etc etc

All good wishes.

BrigR

Thanks Graces7 and thanks to everybody else on the forum. It means a lot to me when other poeple share experiences, frustration and joy. You feel less isolated and lonely. Hopefully there will be plenty of good news for everybody soon.
Brigitte

i-digress

I don't have an auto-immune condition, I have fibromyalgia, but I understand how you're feeling. My illness limits my life so much, and while I'm upbeat most of the time sometimes you just need to vent and get the frustration out.

I hope your review goes well, that you can go back to work and that you continue to improve

Graces7

We are here!

I didn't get a diagnosis for 30 years..;)

And now I live within what I have.

But then I am getting old.

BrigR wrote: »

Thanks Graces7 and thanks to everybody else on the forum. It means a lot to me when other poeple share experiences, frustration and joy. You feel less isolated and lonely. Hopefully there will be plenty of good news for everybody soon.
Brigitte

LavaLamp

Sorry to hear you are suffering so much at the moment. It is so frustrating when doctors etc. don't seem to be able to help you. I'm not sure if you have already covered these avenues, sorry if you have, but I was amazed to find out that a lot of autoimmune diseases can actually be triggered by food intolerences - something that no doctor ever mentioned to me! The ususal suspects such as wheat/gluten & dairy can send your immune system into overdrive, and as a result you start attacking your own body. Now, I'm no doctor and of course this isn't medical advice, but from my own experience, cutting out as much gluten as you can from your diet, along with dairy, avoiding sugar as much as possible and also making sure you have absolutely NO artificial sweeteners can really make a huge difference to the way you feel. Also it is really worth trying to take unpasteurised apple cider vinegar every day.

Patience is definitely a virtue when it comes to these things, but taking a few small steps towards helping your body heal itself can go a long, long way. I really do hope you can start to feel better soon - you have a lot of people sending you good vibes, so grab em while they are there and bask in their healing

Oh, and while the sun is shining, you can't go wrong sitting out in it for a while and bask in that too

Graces7

That kind of dietary change needs very great care and can be dangerous in itself if those things are not the culprits.

Identifying real food intolerance is a skilled art.

Needs a proper exclusion diet to identify the ones that are the case with you.

I went down that avenue many times to no avail

All that affects me is any food additives and tomatoes. And now any fruits. Sugar is fine.

Many magazine articles said re wheat and dairy, but these are fine and they are staples especially in time of illness.

LavaLamp wrote: »

Sorry to hear you are suffering so much at the moment. It is so frustrating when doctors etc. don't seem to be able to help you. I'm not sure if you have already covered these avenues, sorry if you have, but I was amazed to find out that a lot of autoimmune diseases can actually be triggered by food intolerences - something that no doctor ever mentioned to me! The ususal suspects such as wheat/gluten & dairy can send your immune system into overdrive, and as a result you start attacking your own body. Now, I'm no doctor and of course this isn't medical advice, but from my own experience, cutting out as much gluten as you can from your diet, along with dairy, avoiding sugar as much as possible and also making sure you have absolutely NO artificial sweeteners can really make a huge difference to the way you feel. Also it is really worth trying to take unpasteurised apple cider vinegar every day.

Patience is definitely a virtue when it comes to these things, but taking a few small steps towards helping your body heal itself can go a long, long way. I really do hope you can start to feel better soon - you have a lot of people sending you good vibes, so grab em while they are there and bask in their healing

Oh, and while the sun is shining, you can't go wrong sitting out in it for a while and bask in that too

goat2

BrigR wrote: »

Hi all!
Just need to vent a bit. I know there are a lot of threads about autoimmune diseases but mine doesn't really fit into any of them. But I suppose everybody will know about the patience issue...
I've had aches and pains since last September, first a nuisance, then interfering with work and eventually so bad that I couldn't walk or stand without holding on to furniture. That was late October and I've been off work since, tried to return for a few days in November but gave up, it was ridiculous, I paid 40 Euros per day for a taxi and was basically dependent on my colleagues to do fetch and bring for me. First lesson in patience. The second lesson in patience was getting diagnosed. My GP- excellent and most supportive btw-was completely baffled in the beginning, apart from wandering pains I had nothing to show for, no swelling, no redness in the joint. After several blood tests and other tests and trials he referred me on to a rheumatologist, that was mid November. I was so lucky I got a cancellation within a week, because at that stage my patience had worn very thin...
More patience, the rheumatologist needed more blood tests, some of them he said would take at least 4 weeks to come back, prob even more coming up to Christmas and the New Year. He suggested steroid injections and promised 4-6 painfree weeks. A week later I had the next flare up and the worst so far. Intense pain lasting for hours, unable to move. My GP upped the painkillers and at least I could manage.
I was living towards the next visit with the consultant, all he could say was that it was some kind of an autoimmune disease, that there was an inflammatory process and he could rule out a whole list of diseases, no Chrons, Psoriasis, AS, maybe rheumatoid arthritis, but extremely atypical. It started with ankles and knees, now the ankles are absolutely fine, but the knees are not...
Anyway, I've started Methotrexate now and was told to be patient- once again!!! In fairness, I see a huge difference, I can walk short distances, drive, do things around the house with lots of breaks, short grocery shopping. I have to remind myself how bad I was before Christmas to appreciate how well I am now.
Next lesson in patience- going back to work. I have the medical review coming up next Monday. I really want to go back to work, the idea of someone else telling me to be patient doesn't bear thinking!
I want normality!!!
I know that on a good (and patient) day I can count myself lucky that the treatment seems to work and I'm getting better, but other days...
Thanks for reading this. As I said, I just had to vent after a phone call to my boss about getting back to work and being told to be patient.

a disease no one is taking blood for is lymes, also cause joint pain, at start, you get it from a tick bite.
my daughter got it here in last summer, she had been walking in a wooded area , she got bit from a tick, it was ourselves who asked for the blood tests, and it came back showing she had lymes

i-digress

Dealing with the psychological aspects of chronic illness is just as hard as dealing with the physical aspects.

BrigR

goat2 wrote: »

a disease no one is taking blood for is lymes, also cause joint pain, at start, you get it from a tick bite.
my daughter got it here in last summer, she had been walking in a wooded area , she got bit from a tick, it was ourselves who asked for the blood tests, and it came back showing she had lymes

That's very true, I got tested for Lyme's, but it came out negative.
Got a couple of food allergies ruled out as well...
In fairness, what is a bad day now- I can live with it. It's by far better than the best days I had in December.

But thank to all of you for your kindness and concern.

LavaLamp

Graces7 wrote: »

That kind of dietary change needs very great care and can be dangerous in itself if those things are not the culprits.

Identifying real food intolerance is a skilled art.

Needs a proper exclusion diet to identify the ones that are the case with you.

I went down that avenue many times to no avail

All that affects me is any food additives and tomatoes. And now any fruits. Sugar is fine.

Many magazine articles said re wheat and dairy, but these are fine and they are staples especially in time of illness.

I agree that you do need to be careful when it comes to cutting out food groups, and should do it under proper supervision, but I have to disagree that wheat and dairy should be staples in time of illness. The wheat that we are presented as food today is such poor quality, and dairy products are carriers of antibiotics and hormones that are used in cattle.

Just as an example:
"Nutritional expert Patrick Holford says that people can spend years suffering unnecessarily from hidden food intolerances - because most doctors aren't aware that symptoms can be cured by avoiding particular types of foods. People who have chronic tiredness, digestive problems, eczema, asthma, or aching joints may have an intolerance."

All I am trying to say it it is worth asking your doctor to test you for food intolerances when you are faced with any kind of seemingly unidentifable illness.

I personally have taken careful, measured steps to change my diet and have noticed an amazing difference in my health both physically and mentally.

LavaLamp

BrigR wrote: »

That's very true, I got tested for Lyme's, but it came out negative.
Got a couple of food allergies ruled out as well...
In fairness, what is a bad day now- I can live with it. It's by far better than the best days I had in December.

But thank to all of you for your kindness and concern.

Without wanting to sound like a broken record, do you have any artificial sweeteners in anything you eat/drink? I'm mainly concerned about aspartame - it is horrific and should be avoided at all costs. Please, if anyone reading this drinks diet drinks or has "diet" foods (a lot of which contain sweeteners), just do a quick search on how dangerous it really is, and re-think consuming it!

Graces7

Yes always professional help; and I would take "experts" with a large pinch of sea salt or any slat as they cannot agree with each other.

The only way to guarantee pure food in the way that you mean is to grow all your own and keep a goat and hens.

Which I have done in the past. Didn't make me any more well!!

There is no guarantee that eg rice and rye and other flours etc are any "purer". And they cost a lot more and are often harder to digest and are less palateable to many.

You need some pleasure in life when chronically ill.

Not all wheat is bad quality.

Many with chronic illness are on low incomes.

By staples I mean for everyone.

In illness, eating at all can be very hard indeed. That was my meaning. Getting enough nourishment is hard work. In the forty years of my own auto-immune illness I know that.

Retaining weight can be a great issue. Cutting out sugar is not an option. Chocolate is good food.

As for artifical sweeteners; would not go near them. Or diet foods.

LavaLamp wrote: »

I agree that you do need to be careful when it comes to cutting out food groups, and should do it under proper supervision, but I have to disagree that wheat and dairy should be staples in time of illness. The wheat that we are presented as food today is such poor quality, and dairy products are carriers of antibiotics and hormones that are used in cattle.

Just as an example:
"Nutritional expert Patrick Holford says that people can spend years suffering unnecessarily from hidden food intolerances - because most doctors aren't aware that symptoms can be cured by avoiding particular types of foods. People who have chronic tiredness, digestive problems, eczema, asthma, or aching joints may have an intolerance."

All I am trying to say it it is worth asking your doctor to test you for food intolerances when you are faced with any kind of seemingly unidentifable illness.

I personally have taken careful, measured steps to change my diet and have noticed an amazing difference in my health both physically and mentally.

Graces7

Winter is always hard. Many of us go downhill in August when the days shorten; a form of SAD.

You will find the summer easier, please God.

BrigR wrote: »

That's very true, I got tested for Lyme's, but it came out negative.
Got a couple of food allergies ruled out as well...
In fairness, what is a bad day now- I can live with it. It's by far better than the best days I had in December.

But thank to all of you for your kindness and concern.

BrigR

Back from my medical assessment and I'm going back to work on Thursday! Delighted, over the moon!
So this week I'm doing 2 days, the following week I'm given a 3 day week to ease myself in. After that I'm hoping to be able to work full time. Well, i'm planning on taking the odd day of and after all, Easter is not too far away.

Erren Music

I have Pernicious Anaemia. It's headwrecking, it has turned my life upside down and I can be a complete assh0le to deal with. I still look normal and healthy -- ISH.

But I can still walk talk and drive. I have learned that there is very little I can do.

Erren Music

LavaLamp wrote: »

Without wanting to sound like a broken record, do you have any artificial sweeteners in anything you eat/drink? I'm mainly concerned about aspartame - it is horrific and should be avoided at all costs. Please, if anyone reading this drinks diet drinks or has "diet" foods (a lot of which contain sweeteners), just do a quick search on how dangerous it really is, and re-think consuming it!

This is about the formaldehyde issue, and the damage that can be done to your system by overuse.

LavaLamp

Erren Music wrote: »

I have Pernicious Anaemia. It's headwrecking, it has turned my life upside down and I can be a complete assh0le to deal with. I still look normal and healthy -- ISH.

But I can still walk talk and drive. I have learned that there is very little I can do.

I too have Pernicious Anaemia, and an underactive thyroid, however I was determined I wasn't going to be "ill" I had an intensive course of B12 injections, and now give myself one every 12 weeks. This combined with a good diet and additional vitamins means I am fighting fit, in fact 2 years after I was diagnosed I ran a marathon in 4:30 hrs.

There is hope, you just have to believe in your bodies ability to heal and be strong again

edit: has your doctor given you b12 shots and any advice on diet and things? just wondering cos they can be crap sometimes!!

Erren Music

LavaLamp wrote: »

I too have Pernicious Anaemia, and an underactive thyroid, however I was determined I wasn't going to be "ill" I had an intensive course of B12 injections, and now give myself one every 12 weeks. This combined with a good diet and additional vitamins means I am fighting fit, in fact 2 years after I was diagnosed I ran a marathon in 4:30 hrs.

There is hope, you just have to believe in your bodies ability to heal and be strong again

edit: has your doctor given you b12 shots and any advice on diet and things? just wondering cos they can be crap sometimes!!

Hiya guys, I get weekly injections, and weekly bloods, got diagnosed in late 2008 and I have had over 70 injections since then. My diet is excellent, high in fruit content (5 pieces + daily, good brown breads, heavy veg dinners.

My levels never go above 200 with the exception of the week I got neo cyte, 4 injs in 1 week and my levels went to 1500.
7 days later it was 750, 1 more week 430, next week back down under 200 again.

I had a level under 100 when diagnosed first and I now have a lot of nerve damage. I have had other psych effects, fatigue, sore legs, crazy electrical impulses going through the legs, as well as all the standard symptons.

My doc charges 10 euro an inj.


Also had TMJ (stress side effect from such a low level).

Get lots of tests because it is a sign of something bigger. I have had MRI, cat scan, test for cushings, stomach and bowel investigation, I have seen 6 specialists and next on the list is an immunologist. Pancreatic cancer is the main scare at the mo.

LavaLamp

Wow, you really do burn up B12! Sorry to hear you are going through the medical mill though, it's not easy, especially when specialists etc start on the possible cancer route *hugs*

Do you take Folic Acid - it's meant to be a vital companion to B12. It is really important to get a full B vitamin range, I have found something called Hemaplex which is like a magic supplement to me. Of course I can't advise anyone else, just saying what works for me :-) Another thing I highly recommend is very high doese of Vit C. along the lines of 2-3 grams a day, it's a wonder vitamin really. I'm guessing you have had your thyroid levels checked as that can eat up b12 if it is out of whack.

Hang in there - things will get sorted in the end and you will feel like a new person!

Oh, one last thing - candida - probably something dr's don't think about, but it can wreak havoc on your body, so worth maybe having a read up on if you haven't already!

perhaps ask your dr if you can do your own b12 shots - €10 a pop is ridiculous. I was a little unsure until I did my first one, but it's dead easy

Erren Music

LavaLamp wrote: »

Wow, you really do burn up B12! Sorry to hear you are going through the medical mill though, it's not easy, especially when specialists etc start on the possible cancer route *hugs*

Do you take Folic Acid - it's meant to be a vital companion to B12. It is really important to get a full B vitamin range, I have found something called Hemaplex which is like a magic supplement to me. Of course I can't advise anyone else, just saying what works for me :-) Another thing I highly recommend is very high doese of Vit C. along the lines of 2-3 grams a day, it's a wonder vitamin really. I'm guessing you have had your thyroid levels checked as that can eat up b12 if it is out of whack.

Hang in there - things will get sorted in the end and you will feel like a new person!

Oh, one last thing - candida - probably something dr's don't think about, but it can wreak havoc on your body, so worth maybe having a read up on if you haven't already!

perhaps ask your dr if you can do your own b12 shots - €10 a pop is ridiculous. I was a little unsure until I did my first one, but it's dead easy

Yeah thyroid checked once a month, insulin checked, normal glucose. heamoglobin checked, been to haematologist, awaiting results on cushings test, i have 4 symptons of cushings so hopefully will be that and not worse. feel like I am on an episode of HOUSE. I eat lots vit c but I do not take supplements and will not. anyway 16 months on and I am wrecked all the time, brain faded, and an assh0le of supreme proportions, its like i have gone bi polar / schizo (no offence) some days.

CathyMoran

My husband and I have a couple of them between us (including chrons, graves, sarcoidosis, type 1 diabetes, arthritis)...I was very lucky not to get chronic fatigue at the time from mine but ended up suffering chronic fatigue from another illness...it took me until then to understand my husbands fatigue, people will not understand unless they exerience it themselves.

In the final stages of a very high risk pregnancy (he could arrive any day) but making the most of my life.

Erren Music wishing you all the best with your cancer scare, hopefully it will be nothing.

Erren Music

LavaLamp wrote: »

perhaps ask your dr if you can do your own b12 shots - €10 a pop is ridiculous. I was a little unsure until I did my first one, but it's dead easy

I thought about this but I just use the left cheek right cheek weekly rotation. €10 a week doesn't bother me, and we get to have a 5 min chat. I don't even have to queue. The doc is brill and his staff are lovely too.

New medical advice suggest subcutaneous inj's may be the way to go.