Bunni58

[Bunni 58]

Hello, This question if for moderation? After signing up I read the rules & if I’m correct, I must have a FM doctor, is this true.
I’m 86 years old, lived in a small town in rural country, where we didn’t have a doctor. Left there after graduation & moved to a big city.
My story would include illnesses that where hereitary causing me years (1993) to find out that I had FM. Do I have the wrong forum.

 

[sunkacola]

Hi Buni, You do not need to have a FM doctor in order to be part of this forum.

We only recommend to people that they have a doctor who understands what fibromyalgia is and who will be helpful, as opposed to having a doctor who disregards or disbelieves you.

You do not have the wrong forum at all. Anyone who has fibromyalgia, or even thinks that they may have it, whether or not there has been a formal diagnosis ,or whatever doctor they may have, is welcome here.

 

[Bunni 58]

Thanks sunkacola for accepting me without a doctor or diagnoses until 1993.
This is my own story & since I am eighty-six years old it may be long. I was born & raised in a small town in rural country located in Garrett County, Maryland in the Allegheny Mountains, part of the Appalachian Mountain Range. My town consisted of 200 people & was waning because the coal mining companies were going out of business. The whole area at that time was considered poor monetarily, but we were very rich spiritually.
We did not have a doctor & each family took care of their own, with help from their families & the town folks. There was only one doctor for a big area, who delivered babies, made house calls if necessary, etc. Our family didn’t have a car & to travel to see the doctor, etc. we paid (but,could not afford) someone to take us to where we had to go. I did visit the doctor in his office twice, once when the vaccination for entry to school did not take & second when while playing I sprained my arm. My great uncle took us to the doctor in his Model T or Model A Ford & each bump going & coming home hurt so badly I almost cried. The doctor just put my arm in a sling. My left arm was never the same.
I was born in my Grandma’s bedroom with my Mom having problems. On arrival I weighed ten pounds & according to my family I was healthy & pretty.
Little did I know that I had inherited hypothyroidism from both my Grandma & my Mom.
My Grandma had an external goiter & near her death she had Congestive Heart Failure with her legs leaking fluid so badly they had to be bandaged & changed. My Mom had an internal goiter, but could not wear not wear necklaces or anything tight around her neck. She also had the Spanish Flu when she was four years old & thank goodness, she survived. I did not have a goiter but have taken Levothyroxide since I was nineteen & I’m not sure if they took this medication.
I was not diagnosed until 1993 with Fibromyalgia & Chronic Fatigue. For me it was natural to have pains I remembered that I had pain in my legs & always felt tired. I was told that the pain in my legs were just growing pains, but as I grew up they were still there. They did not have a reason for my being tired & that also became worse as I aged. My Mom told me that when I started to walk, I fell & did not walk for a long time. I found out in 2000 that my spine was not connected to the sacrum & had an operation to fix it..Since that time the left legs is worse.
Back to my childhood, we didn’t have shots for the mumps, chickenpox, two kinds of measles, scarlatina & those are the ones I had, that I can remember. However, the worst one was what we called yellow jaundice. I was seven or eight & I vividly remember being sick & throwing up. My Mom gave me crackers to eat & I felt better so she allowed me to go to school. When I got to school I had started to turn yellow & since was contagious they told me to go home. I refused & climbed under a very low table that was lifted off me. Two older girls carried me home, one holding me up using my arms & the other one held my feet, I cried. My Mom put me upstairs in an extra bedroom & no one was allowed in but her. I was so sick I couldn’t raise my head off the pillow & ached all over. I do not recall how long I was in bed, but finally with tender loving care from my Mom I managed to get up. My younger sister thought I was going to die & was beside herself to see me feeling better & downstairs.
I loved my two room school house with a pot bellied stove that was actually red at times in the winter to keep us warm. We got our water from a neighbor’s spring & took turns carrying the (bucket) as we called it to & from there. Then we poured it into a large ceramic cooler & we all drank from the same dipper. I loved school & went nine years without missing a day. It seems like I forced myself to attend school & ended up being sick every week end & during school vacations.
That is it for now, my total exhaustion is rearing its head. I hope I’m not taking too much of your time, but it is important to say what my life has been that has led me to FM/CFS/ & maybe ME.

 

[Bunni 58]

Hello sunkacola,
I am trying to get acquainted with your system & I did thank you for your reply when I started my story.
Please let me know if there anything that I need to do or perhaps what I should not do.
Bunni58

 

[Bunni 58]

Hi saukacola,
I read a post that someone had posted about swelling & fluid/water retention that you replied to. I’m sorry but unfortunately I lost the name of who sent the post. It broke my heart that you referred to the doctors using the 11 tender points to diagnose FM as being fallacious. I’m new to the forum & have never told you that from the age of 19 when my edema started I have battled it all through my life, up today at age 86. I spent a lot of money going to doctors to find out what was wrong with me & received the same reasons that it’s all in your head, you work to hard & I’ve forgotten the rest. These doctors actually did not know what to do, but looking back I feel they did the best they could. Thank goodness we do change with time & that is also true in research. When the rheumatologist told me I had Fibromyalgia after checking all my tender points I could have hugged him. At least I had a name for my illness & didn’t know until today that using the tender points to diagnose it was all fallacious. I’m very content with my diagnosis & the way it was done as they helped save my mind & a lot of other people.

 

[JayCS]

Hi Bunni - thanks for a really vivid read!

It broke my heart that you referred to the doctors using the 11 tender points to diagnose FM as being fallacious....
These doctors actually did not know what to do, but looking back I feel they did the best they could. Thank goodness we do change with time & that is also true in research. When the rheumatologist told me I had Fibromyalgia after checking all my tender points I could have hugged him.

No worry! There are 3-4 reasons the ACR stopped recommending the tender points test in 2010, but mostly because a lot of people (esp. men, or on a good day) were being missed. So anyone diagnosed that way is very likely to have the widespread pain that belongs to fibro.

Here in Germany all doctors may choose which criteria they use, so both my initial rheums did a tender points test on me, the result of the first I can't remember (didn't diagnose me), but the 2nd "confirmed" it in the eyes of that rheum, all points were hurting.

they helped save my mind & a lot of other people

Yeah, that is definitely part of how a diagnosis can help. As long as it doesn't prevent "everything" else from being excluded that might cause similar symptoms...

 

[sunkacola]

Hello sunkacola,
I am trying to get acquainted with your system & I did thank you for your reply when I started my story.
Please let me know if there anything that I need to do or perhaps what I should not do.
Bunni58

You can read the forum rules if you like.
The main thing is that you may not post outside links.....that is, no links to any website or place on the internet that is not within this forum. And other than that, just be polite to people, but I have a feeling that you are not a person who would ever not be polite.
Welcome to the forum.

As for the pressure point test: It is useless because on any given day a person with fibro may or may not feel pain when those points are pressed. I have had that so-called "test" applied to me several times and have variously responded with no feeling at all, some discomfort, and acute pain enough to make me just about scream.

This is typical for most people with fibro. So, if a person does that test and has no reaction and is then discounted as not having fibro it's fallacious. Another thing is that if a person does react to those points and is summarily diagnosed with fibro without going through the testing to eliminate all the other things that could cause tenderness to those points, that person has not been treated appropriately by the medical staff because they may have something entirely different. Many different things can cause a person to feel tender in those points.

Also, a person who doesn't have fibro or any other thing wrong with their body at all may very well react with pain to having those points pushed.......I have experimented with this myself with other people and found this to be true. It's such a simplified thing that it couldn't possibly be accurate as a test for anything and therefore has been dropped by those in the know.

 

[Bunni 58]

Hi sunkacola,
Thanks for your reply that I read with much interest. I’ve been researching many things since noon today & have determined that we are both on the same page about our Fibrmyalgia. I have two granddaughters that are both in their late thirties & I have found that they have a complete new language that don’t know or understand. Even my crossword puzzles have changed with new words in the dictionary. It seems today most of our medical illnesses have the same side effects, just read your print outs from the pharmacies or do research. So, I agree to disagree as long as it applies to Fibromyalgia, Chronic Fatigue, ME (Mono/Kissing Disease as I call it).
Again, my doctor back then was an MD who was well known & cared for his patients, then decided to keep me as his patient after getting the diagnose from the rheumatologist, who was also able to have me as a patient. My doctor told me that since he wasn’t familiar with FM he would study & learn it & oh boy, that he did.
Of course treating FM wasn’t, nor is it easy to treat & I became the Guinea Pig with medications, as we all have done. I’ve had a chiropractor, phychiatrist, phycologist for years, plus acupuncture & all of them have had a positive effect on my FM.
Recently I have had tests for my heart, liver, kidneys, that came back as normal, that I don’t believe. My thyroid test came back as low so my doctor increased the dosage of my medication. Yes I am older but haven’t been able to get rid or cure my FM/CFS/ME & other illnesses that I battle daily. I truly believe inheriting Hypothyroidism has been the crux of my FM/CFS/ME & other illnesses.
However, I feel that the grants made from the government should be allowed for more research. As it is now the money is not given to where it needed, but given by someone (I’m not sure who someone is) decides to where it should go.
Congestive Heart Failure is also hereitary & I think I am prone to it because my Grandma who had the goiter died
from it. So, I continue to take my diuretics & fight swelling all through my body. Music, Laughter & My Faith keeps me trying to do my best.

 

[Bunni 58]

Thanks for your kind reply, it was really appreciated.
This journey for me with FM/CFS/ME, plus all my other illnesses has sure been a test of physical & for me emotional health, For years I have had terrible stress & anxiety that I’m trying to handle by being calm without medication…that is a feat, for sure! I rarely have depression due to my faith, but also realize it is right at my front door, so to speak.
Edema is the worse thing bothering me now. I take a diuretic, that helps, lowered my sodium/salt, keep my feet elevated, etc.etc. Getting old is not Golden.

 

[MissNeverWell]

You can read the forum rules if you like.
The main thing is that you may not post outside links.....that is, no links to any website or place on the internet that is not within this forum. And other than that, just be polite to people, but I have a feeling that you are not a person who would ever not be polite.
Welcome to the forum.

As for the pressure point test: It is useless because on any given day a person with fibro may or may not feel pain when those points are pressed. I have had that so-called "test" applied to me several times and have variously responded with no feeling at all, some discomfort, and acute pain enough to make me just about scream.

This is typical for most people with fibro. So, if a person does that test and has no reaction and is then discounted as not having fibro it's fallacious. Another thing is that if a person does react to those points and is summarily diagnosed with fibro without going through the testing to eliminate all the other things that could cause tenderness to those points, that person has not been treated appropriately by the medical staff because they may have something entirely different. Many different things can cause a person to feel tender in those points.

Also, a person who doesn't have fibro or any other thing wrong with their body at all may very well react with pain to having those points pushed.......I have experimented with this myself with other people and found this to be true. It's such a simplified thing that it couldn't possibly be accurate as a test for anything and therefore has been dropped by those in the know.

Very interesting, Sunkacola. When I was diagnosed, the tender points test was used by a specialist (can't remember if it was a rheumatologist or immunologist or other internal medicine specialist). My general practitioner sent me to him when I reported a strange symptom of my legs feeling weak and partially paralyzed. He was sarcastic and cold, and I'm sure he didn't believe anything would come of the referral. The specialist also did extensive testing to rule out other diseases, particularly scleroderma. The lab took thirteen vials of blood one day, and 12 the next (I think it was the next day or maybe both lots at the same time). I was woozy and weak for more than a week or two. There was also an extended urinalysis, oh, and I think a barrium swallow test of the esophagus, probably to see if it narrowed. The results took a while to come back. At one point, the doctor said I definitely have fibromyalgia but he wasn't sure about the scleroderma. Finally, he decided I didn't have the autoimmune disease. For many years I felt fraudulent because I was wanting an answer so much that I was almost telling him what he wanted to hear in terms of the tender points, although in all truthfulness, I don't think I had much pain from them at all. However, he said I "definitely" had fibromyalgia, so he must have based it on additional concrete criteria. To me, it was the chronic fatigue, although morning stiffness and fatigue was definitely a symptom, and any muscle pain I did get tended to feel like nerve pain and last for a while. I would, and still do, feel twitching and pulsating in the legs. Now it's the concurrent multiple chemical sensitivities that cause the most problem.

 

[JayCS]

For many years I felt fraudulent because I was wanting an answer so much that I was almost telling him what he wanted to hear in terms of the tender points, although in all truthfulness, I don't think I had much pain from them at all.

Reminds me of the last tender spot mine tested where I gasped, but then said: no, wait, I wasn't prepared, try again (cos I wanted it to be fair and realistic). But she replied: being prepared doesn't count, that reaction did.

However, he said I "definitely" had fibromyalgia, so he must have based it on additional concrete criteria. To me, it was the chronic fatigue, although morning stiffness and fatigue was definitely a symptom,

Nowadays we can have check with the 2016 ACR criteria (or 2022 UK guidelines) to feel surer.

and any muscle pain I did get tended to feel like nerve pain and last for a while. I would, and still do, feel twitching and pulsating in the legs. Now it's the concurrent multiple chemical sensitivities that cause the most problem.

Is that diagnosed MCS? Possibly overlap with MCAS, which also has those?

 

[sunkacola]

Fibromyalgia, Chronic Fatigue, ME (Mono/Kissing Disease as I call it).

Just for clarification: ME stands for myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome, or CFS.
Mononucleosis is an entirely different thing. Rather than a syndrome, it is an actual transmittable disease, which is called Mono and used to be called the "kissing disease". ME is not contagious like Mono.
Mono is treatable with medication and is also curable, although it often will re-occur.
ME is like fibromyalgia in that the cause is unknown and so far no treatment has been found that works for the majority of patients, and there is no known cure.

Recently I have had tests for my heart, liver, kidneys, that came back as normal, that I don’t believe.

Why do you not believe the test results?

Yes I am older but haven’t been able to get rid or cure my FM/CFS/ME & other illnesses that I battle daily.

These are not things that most people with them can cure. they are not considered curable syndromes.

However, I feel that the grants made from the government should be allowed for more research. As it is now the money is not given to where it needed, but given by someone (I’m not sure who someone is) decides to where it should go.

I certainly agree that it is sad more money is not being allocated to fibro research. But other things are taking precedence at the moment. One thing that makes research difficult is that there are so many symptoms and no two people with fibro will have the same set of symptoms, nor the same reactions to treatments.

I don't think there is a "someone" who is deciding these things. It's more a matter of where the greatest interest is, and what condition or disease has the affect on the most people who can raise or donate the most money for that research.

 

[Bunni 58]

Hi sunkacola, Oh boy, I have misunderstood a lot of things & I thank you for taking your time to straighten me out.
I have all the symptom's for Chronic Fatigue Syndrome along with my Fibromyalgia starting at a very young age. I either was told, read or imagined that they can be had together. Actually I am totally exhausted, going to bed that way then waking up the same. I’ve always assumed that somehow both FM & CFS go together, is it true? I’m basically disabled & in my bed with my feet elevated for my Edema that I now read is part of Fibromyalgia, is this true? I can hardly walk using a quad cane for years, can’t go up & down stairs, I’m exercise intolerant. etc.
Due to being 86 years old my mind is changing & I have trouble doing anything. My wonderful husband passed on eight years ago from COPD & I lived alone for three years & now l live with my son & granddaughter. I’m alone most of the time because both my son & granddaughter work plus have a full schedule. I‘m blessed that they do what they can to help me & I have a friend that comes in to bathe me, clean my room, do my laundry, etc. My dinners consists of Lean Cuisine‘s (with low salt, that I microwave). My diet is not great because I can’t cook nor shop for groceries myself. When I first had peptic ulcers that turned into GERD I did my own shopping & cooking.
I finally found medical help with Mylanta & took Xanax for stress & anxiety. Then Prilosec came out & I have used it for years, but it still works. After three tries I finally got off the Xanax for good.
I don’t believe the results of my tests because I feels like all I’ve been through, emotionally & physically, what I inherited & just aging must have effected my heart, or liver, or kidneys in someway or somehow. Since I‘ve had this edema since I was 19 that has flared up really bad when I was pregnant (so bad I couldn’t get a stretch footie on my left leg & the doctor gave me a shot to lose the fluid). For years it has flared up & now since diagnosing my FM in 1993 it has overtime gotten worst to where my left side of the body stays swollen. Personally I feel that I am going to have/or may have Congestive Heart Failure like my Grandma. All signs of edema is leading me in that direction.
I do know that the things I have can’t be cured, I worded that sentence incorrectly.
When I found out I had FM I joined a forum in Canada & stayed with them for many years. Then I joined a forum for CFIDS because I thought it was connected with CFS. After awhile I left but stayed in touch with a girl that asked me to be friends with her. We talked by phone or sent emails to each other for several years. However, she stopped sending emails & did ask me not to call anymore. I send a Christmas card to her & her family wrote to me saying she had passed on. In my lifetime I have made so many friends & have wonderful memories/some very sad ones, but overall, even with my illnesses, I am grateful for my faith. Now I belong to a forum for FM/CFS/ME or ME/CFS & I’m very much aware of the trouble we are having trying to get more research done. Because ME/CFS & COVID have the same symtoms we have been lucky to learn more about ME/CFS. However, I also learned that the money we were receiving has been cut back again according to a post I received. It isn’t good new!

 

[sunkacola]

assumed that somehow both FM & CFS go together, is it true?

They don't "go together". They CAN be found in the same person, but they do not always occur in the same person. They are separate syndromes, with some overlap in their manifestation and symptoms. Most people have either one or the other.

Fibromyalgia can cause extreme fatigue, so sometimes people with fibro think they have ME/CFS. And some people with ME experience chronic pain. Basically, if the main thing you experience is pain (with fatigue accompanying it) then you more likely have fibro. If your #1 problem is severe fatigue chronically, to the point that you really can't get much of anything done and the pain is a lesser symptom, then you'd be more likely to be diagnosed with ME.

But neither one is just diagnosed by their symptoms.
All of the other tests have to be done to eliminate the other diseases and syndromes that could cause the symptoms.

Edema that I now read is part of Fibromyalgia, is this true?

Fibromyalgia doesn't cause edema. That is probably being caused by something else. One main cause of edema is lack of physical activity. Staying in bed a lot will exacerbate this. There are other causes as well, such as diet, and you can look up the causes on the internet.

I don’t believe the results of my tests because I feels like all I’ve been through, emotionally & physically, what I inherited & just aging must have effected my heart, or liver, or kidneys in someway or somehow.

I understand where you are coming from on this, but your feeling that it "must" have affected your internal organs "some way, somehow" doesn't mean that it has. I suggest that you take the word of the doctors on this rather than refusing to believe there's nothing wrong with those organs. It is much healthier for you, as well as being more realistic, to accept the results of the tests. Those tests do not lie.

Personally I feel that I am going to have/or may have Congestive Heart Failure like my Grandma. All signs of edema is leading me in that direction.

This may happen to you or may not. I always think it's best not to "borrow trouble" by assuming something bad will happen when there's no way to predict the future. Thinking negatively about the future or about what will happen to you can't help you. And there is some evidence to suggest that if you insist on believing that some specific thing will go wrong with your body it can actually cause that thing to happen when it otherwise would not have. The mind is a powerful thing; best to use it for positive rather than negative.

Because ME/CFS & COVID have the same symtoms .

Ummm....no. Covid is a virus that causes serious upper respiratory problems and flu-like symptoms. Chronic fatigue or ME does not have those symptoms. ME is characterized by fatigue, not by upper respiratory symptoms.
The only thing that ME/CFS has in common with covid is fatigue, but fatigue is generally associated with any illness; even having a cold will make you tired because your body is using energy to fight off the illness..

I am glad you can live with family and that they help you. You are very fortunate in that, even though not in other ways. You are certainly welcome here and I hope the forum will be helpful to you.

 

[MissNeverWell]

Is that diagnosed MCS? Possibly overlap with MCAS, which also has those?

Here in Canada, it's very difficult to find doctors who believe much less specialize in multiple chemical sensitivities. In Toronto, there is a specialized clinic at the Women's College Hospital, but there is such a long waiting list the goal is primarily diagnosis/research, not treatment. However, they did have support groups at one point. Nonetheless, I know that I have multiple chemical sensitivities because of the disruption they cause in my life, leading to extreme isolation - wood burning smoke (burns my throat, nose, eyes and causes hoarseness/laryngitis, disorientation/brain fog, motor incoordination and trouble breathing); perfumes (irritation of the eyes and nasal passages, brain/fog motor incoordination, fatigue); second hand and marijuana smoke; laundry detergents/softeners; scented candles; chemicals in manufactured products/construction/road maintenance; vehicle exhaust - the list goes on. It's really a "no-brainer" at this point, although I would feel much less alone if I could find a doctor who understood and could help me deal with it.