Complex illness

[Mishque]

I have ME, Fibromyalgia and Vulvadynia and I now have Interstitial Cycstitis!! The problem is that with ME your body will not accept conventional medicines, not even strong painkillers! I just have to suffer pain most of the time.

I am looking for alterative medicine help that hopefully my body will accept.

Personally I wish these doctors and scientists would look at what is causing excess acid in our bodies. It must be some kind of imbalance in our systems. If they could solve what part of our body is not working properly, i.e. liver, gald bladder, hormones etc., we could take the right drugs to cure the problem. All they do is look for a treatment to solve the symptoms which to be honest dont work, or if they do, not for long. Having had Vulvadynia for many years I have tried all the acid free diets, drinks etc etc., tried potions, creams, medications, exploratories, but to no avail. I keep asking the consultants, "why am I producing too much acid" but they cannot answer it because no one is investigating it and none of the doctors actually know, they just try to make you think that they do. I have found that all they want to do is use you as a guinea pig for different tablets that in the end cause you more side effects and problems than you had in the first place!!

Sorry, but I had to get this off my chest!!

Has anyone else got problems the same as me?

Kind regards
Mishque

[Mishque]

Hi Laura,

What do you mean by weak acid? I have been on a low oxalate diet for years and it doesnt help. I dont eat any fruit except for an occasional Banana. I only eat peas, runner beans and carrots as they are the only ones that agree with me. In fact I dont eat any acidic foods. I have lots of antacid because I have a hernia anyway and Prelief is basically the same thing. We dont have it in the UK. I have tried it though and it doesnt help.
I went through a proper elimination diet with my consultant many years ago so I do try not to eat foods that upset me.

I have also tried most of the cream and potions on the market and even tried special washing powders etc to see if that would help.

Aloe vera juice helps when my bowels are upset and Aloe vera gel sometimes gives me relief but that's about it. I have also tried Homeopathic medicine but that doesnt help either.

Mind you sometimes I am in so much pain with the Fibromyalgia and have so many electric shocks going all over my body that the Vulvadynia is a minor problem in comparison.

Such is life I guess. Until the doctors can sort out why we produce so much acid I dont think any of us will have a pain free life.

Good health to you to.
Kind regards
Mishque :cat:

[Kara29]

Mishque,

I'm sorry you are suffering so badly. I wish I could help you about the alternative medicine. Maybe some of the other ladies here can help you with this.

Well Wishes,

Kara

[Mishque]

Thank you Kara for your kindness.

Best wishes
Mishque :cat:

[Ginny]

I also have a very complex system. I don't even want to explain all the illness I have. I have tried everything at least once.

Years ago I was helped by Accupressure. Not accupuncture. It's more like a massage on the accupressure points. Much more pressure than a massage.

I am now being helped by taking Quencetin. I am shocked how much help I am getting from it. I also stopped working full time so I am giving my body the chance to heal.

Ginny

[Mishque]

Thank you both Laura and Ginny for caring.

I must admit I am very interested in your theory Laura and maybe when you have written your book, I can have a copy to try the diet etc. It is obviously very complex and I would have to order some PH strips. I am not sure whether they sell them over here in the UK but I can find out.

Where did you get the idea from? Was it your doctor?

I must admit though Cucumber makes me worse so I leave that alone. I havent tried Avocado so I dont know. I dont normally eat leafy vegetables as I find they give me too much iron, which again causes me problems, but I will try a little at a time and see what happens. I already drink Avian as I find that a really nice bottled water. The only dairy I have is milk which I have to have to help with my stomach and my hernia. I cannot drink herbal teas very often because they upset me. I am on a very basic diet to be honest.

The trouble is with these illnesses is that none of us are the same. Different things help different people and that is what makes it so hard to find the right cure for yourself. If not cure, something that helps and doesnt upset the other illnesses. It is so complex.

Thank you so much for your help Laura.

Best wishes
Mishque

[Kara29]

Please try to remeber that we are not here to give out medical advice. IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

[Mishque]

Dear Kara,

Thank you. I would always contact my doctor before starting anything but new ideas are interesting and worth looking at to put before him.

In the UK the consultants do not monitor you, once they have diagnosed you they leave the rest up to your doctor, even medication. Patients are left to solve their own problems as regards diet, etc., we get no back up here like you do in the USA. The NHS do not cater for that unfortunately. A lot of the things I have found to help me have been through my own investigations and trials and not through the doctors. It is a long process.

I do wish you well Kara.

Kind regards
Mishque

[christinaw]

Hi Mishque,
Have you looked for an alternative medi MD in your area? There are some folks who are herbalists, some who are massage therapists, and then others who receive doctorate level degrees in alternative medicine. You may also find traditional MD who also works with alternative med-this is best option I have found.

[Mishque]

Hi Christina,

Yes I have looked around but there are none within my area that are both doctor and herbalist. They dont have many of these doctors on the NHS and they are too expensive in the UK to pay for on a private basis. However, I have just contacted a homeopath to see if she can help me but she is not a doctor.

Anything is worth trying just to get rid of a little of the pain.

Thank you for writing.

Kind regards
Pauline

[Charisse]

What is ME? I am sorry to hear you suffer from so many illness. I have the same problem. I have Gastroparesis (delayed gastric emptying), Fibromyalgia, IC, IBS, anxiety, allergies, over-production of stomach acid and reflux (both from my stomach into esophagus and bile refluxes into my stomach as well). Because of all these I also suffer from depression at times! I have also wondered why my stomach produces so much acid? It's obviously not normal. I was having bad diarrhea before getting on stomach acid medication becuse the acid was just running right through me. I have heard that there is a connection to mast cells and allergies and production of acid in your body so maybe this is why? Have you tried Atarax? I don't take any painkillers other than Ibuprofren maybe once or twice a week.

[Kara29]

:) not sure what ME is referring to.

[Mishque]

Hi Charisse,

Sorry I havent replied sooner but I have been very poorly and havent been able to sit at the computer. Please forgive me.

ME is the new word for Chronic Fatigue Syndrome, the M and the E stand for some new words but I cannot remember them right now as they are quite long.

I am sorry to hear about all your troubles. I too have a lot of acid. Whatever I do, nothing seems to calm it down. I have Institital Cystitis most of the time which is really uncomfortable but there isnt much I can do. I also have IBS and the allergy problem. In fact it is getting to the point when I cant take many medicines at all. All I take is Ibuprofen as all the other painkillers just knock me out and then I cannot function at all.

I am waiting to go into hospital to have my bladder examined as I keep getting urine infections and none of the antibiotics seems to be working. The trouble is every time they give me a date, I am not well enough to go in. It is most frustrating!!!

I havent tried Atarax. What is it for exactly?

The photo looks lovely and you look very happy. Its nice to see. These illnesses are so painful and upsetting and its hard to cope every day. But we must keep smiling. :smile tee

Kind regards
Mishque :flower:

[Eccles]

M.E. is myalgic encepphalomyelitis. I'm in the UK too & have severe ME., fibro & I.C. ( no vv, but I do have kidney stones). I agree with you that the doctor's never look at the whole picture, they just look at us in bits. The only pain killer that works for me, Co-Proximal, has now been banned by the government.

Ibuprofen is very acidic - don't take it, it will make your IC much worse! It makes my bladder bleed & drives my IC crackers.

I take Prelief with food to alkalise it, & am following the Guaifenesin protocol for the ME & fibro. My urologist is talking of Botox for the IC.

Have you tried Gabapentin?

[Mishque]

Hi Eccles,

Thank you for the ME bit. I can never remember it!

That may explain why I have blood in my urine as I take a lot of Ibuprofen. Its possible that I have kidney stones too. I will have to wait and see on that one. You can still get co-proximal if your doctor supports the fact that nothing else helps you. A friend of mine has just started taking it again as it was the only thing that helped with her problems. So I would ask, you may be lucky.

As for Gabapentin and Pregabalin, I tried both when this all first begun but unfortunately cannot cope with the side effects even on a 12mg dosage. All these kind of drugs including Amitriptaline I cannot take, even on minute doses. A quarter of a tablet knocks me out for at least 24 hours which is no good when you have life to get on with. On both of the drugs I felt like I was on cloud nine and could not function. Oh it solved the nerve problem by making you so dosey you didnt notice it!!! I am much better off not taking them because at least I can cope with every day life, albeit slowly.

I also tried Prelief but it did nothing for me at all unfortunately. I do use Losec when things get too bad.

I have become so sensitive to everything that I have become very hard to treat. At least my doctor is very patient and does understand that I am not just being difficult but that I do have a big problem.

I am working with a Homeopath at the moment to see if they can help me so I am hoping!

All we can do is live in the "Now" and keep smiling. One day the doctors will find an answer to all our problems.

Best wishes
Mishque :cat:

[Kara29]

Interesting Information Ladies. I'm not familiar with any of this stuff. Thanks for explaining it. You have a great attitude Mishque. :smile tee

Kara

[Eccles]

What is Losec? Can you buy it in the UK? I'm sorry you can't take pain killers Misque, that must be awful.

My new GP won't prescribe me Co-Proximal; her English is very poor & she's never heard of IC. She thinks Paracetamol (Tylenol?) will work for bladder & kidney stone pain - I might as well take Smarties.

Good luck with the homeopath, let us know if s/he finds anything that helps you.

[Mishque]

Hi Kara,

I try very hard to keep cheerful and not look further than today. It makes everything easier to handle then. I have read a lot of "Tolle" books which I have found most comforting and have helped me cope with the pain in a strange kind of way. I cant say I dont fall occasionally when it all gets a little too much but I do try to find the positive out of the negative.

Life is hard but we have to make the best of what little we have and then hopefully one day the sun will shine. Either that or someone will just take me away in a little white van! :smile tee :smile tee

Best wishes
Mishque

[Mishque]

Hi Eccles,

Thank you for your kindness. I really am hoping the homeopath will be able to help. I will definitely let you know if I find something that works.

Losec is the trade name for Omeprazole. Its a gastro-resistant tablet used for heartburn, reflux, indigestion and ulcer prevention. I just take them when my stomach is really bad. You have to get them on prescription though.

As for your doctor, she really doesnt sound too good. You really need someone who understands, it makes life a little easier then. Paracetamol just upsets my bowels but certainly doesnt do anything for the pain. As you say you might just as well take smarties!

Best wishes
Mishque. :)

[Mishque]

By the way Eccles,

Have you tried taking Peppermint Oil tablets. They are very good for stomach cramps and are supposed to help to eliminate stones. I take one before every meal and they do seem to ease off the pain a little.

Diet is supposed to help too so I guess that's my next port of call after the homeopath.

Just a thought.

Best wishes
Mishque

[Kara29]

Mishque,

What are Tolle books?

Kara

[Mishque]

Hi Kara,

Eckhart Tolle is a counsellor and spiritual teacher. His books help you to look outside your pain and live in the now. I guess his ideas are very similar to buddism. Two books of his "Stillness Speaks" and "The Power of Now" have been of great help to me coming to terms with my illnesses and my pain and in a way given me peace inside. I havent actually looked at them for a while but his words did help me get through an operation because I couldnt have the medication to put me to sleep.

His books are very deep but very meaningful.

Kind regards
Mishque:flower:

[Kara29]

Mishque,

I'm glad you found what works for you. Very Interesting. I am always looking for new ways to cope with my pain.

Kara

[Eccles]

Thank you Misque. I can't take any form of mint as I'm doing the Guaifenesin protocol for M.E. & fibromyalgia & mint prevents it from working. I hope others can benefit from your advice tho'.