With CIDP... Doctor... What not to take?

To Doctors who may give free consoltation
Or who ever may have helpful answers
Please help…

I was diagnose with CIDP since a year ago… after a few months I haven’t been back to my doctor or had any medical treatment because of finacial probs.
Dealing with 24/7 pains… numbness… weak… just taking over the counter pain killers.

I just would like to know what type of meds and suppliments not to take?
To CIDP worst.

Thank you

Hi Cam - If you were diagnosed with CIDP and are not getting any treatments or relief from the pain, I would strongly suggest finding a way to get back to the doctor. CIDP left untreated, is not good for your system, especially since it sounds like you are in constant pain. It always comes down to money, doesn’t it? Its the way of the world right now, but honestly, if there is anyway you can seek treatment, it is critical for you to try to control the demeylination . I have been diagnosed with CIDP since 2012 and receive IVIG treatments every 6 weeks, and take
Lyrica for the nerve pain. The doctor prescribed a pain killer, but I find that Tylenol or Ibuprofen
also helps with the pain. I hope this helps. Hang in there.

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Hi Cam

Like your self , I was just diagnosed with CIDa few months ago: so First is like to say I am sorry about your dx. I would agree with the others who are going to tell you, you need to get and continue some form of treatment. I am currently managing on a regimen of anti seizure drugs and pain management meds that were just changed to oxy. I will say some of the best support I have received has been from this group here… ask a lot of questions, make sure you have a doctor you can trust and also talk to. I personally can’t tell you what happens if you don’t treat CIDP consistently but I am sure it’s probably not going to be a great outcome. I hate to say welcome to a group like this but people here are really good


Cam - I was first hospitalized w/ CIDP in December 2014. I am currently looking into a diet focusing on foods with anti-inflammatory features.

Below is the link I found the other day.


To be honest, I only started looking because I had a relapse a few months ago. I will let you know how this works - I see my neuro in less than a week and attending a conference in 10 days. Steve

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So sorry to hear of your situation. Please realize non medical people, no matter how well intentioned, should Not be solicited for advice as to what medications and supplements to take to help you feel better. They/We can’t act to direct you re: what to safely take, supplements or otherwise. That should only be done via an MD or perhaps a Nurse Practictioner local to where you live as a starting point.
No idea what your financial situation is like which seems to be a major issue for you. Over the Counter meds are likely NOT appropriate in your case with the degree of pain response you say you have daily because they aren’t strong enough. You have had a CIDP diagnosis for a year now. That isn’t something that anyone other than a licensed MD, preferably a Neurologist, should be helping you with.
While I empathize with your financial issues, the bottom line is you need the help. Do you qualify for/have applied for MediCal or whatever that version is called in the State where you live? You have access to a computer. Find out where the nearest office is located based on where you live, make an appt and go in to speak to someone to see what options may be avalable for you or try at least calling to request help based on your diagnosis (that you will have to explain to whoever you speak with).
Are there any free medical clinics anywhere near where you live that you can get to?
CIDP really requires the oversight of a Neurology specialist. Call your local hospital(s) and get names + phone numbers. Go online and do your own search based on where you live and your ability to either drive or obtain transportation to be seen. Hospitals can also be a source of info re: Financial Aid re: where to call for info/help. See if your MD who last saw you can help as I am sure his office has likely treated people with financial issues before as well and may be able to steer you as to who to contact for assistance if your finances are the sole thing holding you back for obtaining any further care. Best Wishes!

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LJ11, thank you for your very comprehensive and helpful advice. You are absolutely right about asking non-medical people (and strangers at that!) for medical advice. This is a peer support site, so we can only share our experience here, and offer each other support as we deal with our condition.

Cam is in The Philippines, where the medical landscape is very different from what it is in North America. But the same holds with regard to asking and giving advice about treatments: we don’t. We share our experiences and support each other. And we are pretty good at that!

Thank you nonetheless for your help. Your post made excellent reading!

Seenie from Moderator Support

PS: to figure out where a member is from, click on their avatar, and then on the second avatar that appears. Unfortunately, members who were with us on the old platform lost their profile information in the great migration of 2016.

Cam, welcome to our support community. When you joined, you said that you were “just looking for others who may understand how it feels like.” Well, you’ve found them! Hundreds of them, and many of them friendly and helpful, as you can see.

This is a peer support community: we share our experiences and support each other. We cannot give medical advice, because that must come from a qualified medical practitioner. Do enjoy the support and the great company here, but please do not ask for medical opinions or suggestions for medications or supplements. We cannot provide that.

All the best to you

Seenie from Moderator Support

I understand… I thought there are medical experts here that could help. Since all we can afford is the cheapest over the conter pain killer like Ibuprofen or Paracetamol. Or perhaps some organization nongov/private that could help. With this specific disease.

Its alright never mind that. Either way for a almost a year I am just use with the 24/7 pains. For others who does not understand thinks I am a slot or a burden to my mother. I tried to understand them my self. Every time I feel pain in feeling and physical such torture. I already gave up. Thanks for the comments anyways.

The point was about understanding CIDP more.
Was it the main reason of CIDP was the abnormal action of the Immune System attacting the nerves.

What if I take suppliments or food that improves the Immune System… will the disease go worst?
What is worst? Or How will it be worst? What is the worst part or symptoms of CIDP?

Cam, I know, it’s torture: simply torture to have your body attacking your nerves. Meanwhile, you are in a place where good medical help is not easy for you to get unless you have lots of money, either for treatment or for expensive insurance. The Philippines is a beautiful country but one with a lot of challenges for its people, and getting good medical care is one of them.

Even though we are not doctors, and we can’t give medical advice, there is a lot to be learned from the people on this community. Have you had a look at our Complementary Therapies section? That’s where people share their experiences of non-medical things which they might have found helpful. You never know what you will find in there that you might be able to access.

Your question about taking foods or supplements which improve the immune system making the disease worse is a great one. I don’t have CIDP, but I do have a nasty autoimmune disease, Psoriatic Arthritis. My immune system is malfunctioning too, but supplements and “immune strengthening” foods don’t change that. I don’t think you need to worry about your immune system getting worse from anything that you can do. As far as I know, only very specialized medical intervention can tinker with malfunction. And it’s not your whole immune system: it’s only a part of it that has gone “wonky”.

Eating a balanced diet high in fruits and vegetables can never hurt. You do need to be careful with supplements, though, because they can do harm if not used wisely. Why not have a look, and join in a discussion on complementary therapies?

You also asked about doctors who give free consultations. I doubt there would be a trustworthy doctor who would do that without seeing you and your medical record. (And the important word is “trustworthy”. Just because someone says online that they are a doctor, doesn’t mean that they are the kind of doctor that you need.)

I really do empathize with you, you’re in a difficult situation. As you can see, though, the good people in this group will do the best that they can to support you emotionally, and with helpful suggestions about complementary therapies that may be available to you.

All the best to you, Cam, and take good care

Seenie from Moderator Support

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