What's the difference with CFS and OI? EDS and Fibro?

AnneVA

Active Member
I just looked at the IOM Diagnostic Guidelines for ME/CFS For Physicians and my daughter hits every criteria. She was dx'ed 4 years ago with EDS and then POTS. Chronic Fatigue was never discussed.
  • IF I had taken her to a dr. that focuses of CFS, would he have not dx'ed OI?
  • If you had gone to a dr. that specializes in dysautonomia, would you have been dx'ed with OI and not Chronic Fatigue?
  • Are they one and the same?
  • Are they treated differently?
  • EDS and fibromylagia the same thing; depends on speciality that dx.ed you?
THis is a totally new area for me to explore and I've got lots of questions.
 

Issie

Well-Known Member
Here again we are talking about subsets. Not all FMS people are Hypermobile - like those of us with EDS. For me I was DXd with FMS first and then EDS. Do I have both????? Maybe, not sure. With dislocations and easy bruising and with age more saggy skin - there is a definite collagen problem. But EDS III, is the only form of EDS that they can't yet identify with genetic testing. (But, 23&me has picked up plenty of markers for identifying it being in our genetics.) and it is in multiple family members for our family. My sister has CFS very badly with OI. I have HyperPOTS and FMS/EDS. All three of her kids have POTS and one has EDS. So it's very confusing. All of us present differently. What works for me does not work for my sister. And there appears to be varying degrees of MCAS with all of my family. Mine being the worst of all of us.

First you need to figure your subset out and then connect with those who fit your type the closest. I've spent years educating myself in all that I could find about the connections. It's very complex and not something a few threads of conversation can help you understand.

I think there are genetic dormant genes and something triggers the turn on of those genes. Be it vaccine, virus, protozoa or trauma - something makes things go active. This compromises the immune system and cause a lot of inflammation in the body. We can work on those things. We may not ever figure out the WHY but maybe we can figure out what to do about it.

The journey is long. But some are finding rainbows at the end of it. The more you learn the better you can figure out the function. A lot of what our body is doing that we consider symptoms - is our bodies trying to compensate for the dysfunction that is going on. If you disrupt that compensation, you could cause yourself to get worse in other ways.

Issie
 

AnneVA

Active Member
I understand the spectrum these disorders lay along and the variability in generations and individuals. I wonder if we're missing something that could help my girl if we keep our focus on POTS and EDS. Would a savy CFS dr. be a plus in her life? Saline infusions have helped so much. Are those common in the treatment of CFS or is there resistance like we have found within the POTS medical community? We are wondering how different her medical care would be if we were to look for a CFS dr.
 

Issie

Well-Known Member
It's still not known what to do for CFS. We actually have more help with POTS than people with CFS has. My sis sees a world known CFS specialist and is included in a lot of the research projects looking for answers. She has found very little to help herself. She is slowly starting to do what I've been doing with diet and thinks it is making a difference. But what we do supplement and medicine wise is totally different.

Issie
 
Last edited:

Issie

Well-Known Member
I have fatigue, I can mark every box of the old list except for two and every box of the new list to qualify for CFS but...... I don't think my fatigue is CFS. I think it's connected to my other issues. My fatigue and my sisters fatigue is different.

But I do think we are dealing with a similiar issue. We are just presenting differently.

Issie
 
Last edited:

AnneVA

Active Member
Thanks, Issie. I appreciate your take on all of this. My girl meets all criteria for the diagnostic guidelines recently put out. The descriptions of brain fatigue, physical fatigue all seemed right on target for how she was feeling at her worst. I guess we just tackle the symptoms to each unique presentation. It appears to be so individualized. And I am starting to explore the Mast Cell angle. Thanks again.
 

Issie

Well-Known Member
With her having POTS and EDS - I'd for sure look closely at MCAS. When I started treating this and my autoimmune system dysfunction - I started really improving.

Issie
 

AnneVA

Active Member
What type of dr. would be best in looking at this possibility? I recently switched her from a proton pump inhibitor that she'd been on for 2 years for GERD related to POTS/EDS to zantac, one of the 2 histamine meds recommended for MCAS. She senses an improvement in mental clarity, etc. Next step is to add zyrtec and see what happens. Her POTS dr. is wonderful with the hypovolemia and low blood pressure but is very narrow in his focus. He's not interested in anything else. Thanks for that bit of direction.
 

Issie

Well-Known Member
Adding the H1 will for sure improve things. I was told to never take an H2 (Zantac, Pepcid) without an H1 (Allegra, Claritin, Zertec). The reason is the H2 will convert to an H1 and you have even more problems. There is also an H3 that some find helpful, but I'm not able to take (Singular). The thing that helped me the most is GastroCrom. It is a mast cell stabilizer. I had to start out much lower than DXd with it and still use less than prescribed. It's very expensive - so insurance is very good for this one. There is one other mast cell stabilizer, but it has to be gotten from Canada - Ketotifen.

As for doctors - I'm very fortunate to have some of the best. I've seen docs at Mayo in AZ. My neurologist - Dr Brent Goodman and allergist/immunologist Dr Lewis are the two that helped me get MCAS figured out.

I also have a Protozoa that is similiar to malaria and some confections connected to Lyme disease. My doc for this is Dr Stephen Fry. What he is doing with diet and some meds and supplements addresses the autoimmune system. This has been one of my BIGGEST helps. If you want to learn more about this, I posted a thread on this forum that will take you to another forum where I have written at length about it. Giving a lot of science and research behind how this can be a big part of POTS problems. It can be gotten from mosquitoes and ticks. Being from the South I had plenty bites from those. They are thinking it can also be passed down to unborn child from mother and they think might can be spread through sex. So if ones immune system isn't strong enough to keep it at bay, it can make you very sick.

Issie
 

AnneVA

Active Member
Thanks for the H1/H2 info. and the type of dr. who helped you. I haven't yet delved into this. The link come up as an error. How do you keep looking? Protozoans? Mosquitos? Ticks? Who found that? Thanks again.
 

Issie

Well-Known Member
I'll try to get Cort to add the link. I'm on my phone and it's a bit tricky. You can look it up under Dr Fry or look my profile up and my content on this forum.

I've had a lot of years searching for answers. And I found the Protozoa by accident. One of my friends went to Dr Fry with Chronic Lyme and invited me to go with her to the doc for the first time. When he found out I had POTS the attention turned to me. He said I know what's wrong and how to fix it. I made an appt.and got tested and sure enough I had the little invaders. He uses Labcorp to do the Lyme and co infection testing and his lab for the other Protozoa. I've been on his protocol for 2 Years. There are times when my POTS is very minimal. Sometimes I don't even qualify with the heart rate testing. It's still there but I went from being in a wheelchair to pretty active and having a life. I was 3rd stage Chronic Kidney Disease and its reversed to stage one now. So some very positive things here. There is another doctor here that also has POTS and the Protozoa. He went from being bed bound to riding a bicycle 1,000s of miles a year. He is back practicing and an inspiration too. Diet and addressing the immune system and inflammation has literally been a life saver for me. I don't think I would still be here without doing this. I can tell if I splurge to much on my diet - a huge difference in how I feel.

Issie
 

Get Our Free ME/CFS and FM Blog!



Forum Tips

Support Our Work

DO IT MONTHLY

HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT

Latest Resources

Top