Diagnosed This November

[BrendaNY]

Hi all, I'm so glad I found this site! I have been poking around for about a month and there is so much to take in. I was finally diagnosed in November, 2 months into a debilitating flare. I have had many symptoms for years that I was able to "deal with" but this time, I couldn't even make it from my couch to the bathroom for months. I was poked and prodded by both the Rheumatologist and Oncologist before receiving any kind of treatment or medication. Thank goodness, neither doc feels my illness is terminal. The Rheumatologist informed me that I'm her first FM patient. This worries me a bit, she's young but not 20s-30s, easily 40 so I'd think she would have other FM patients. Do you guys agree? I don't have many options in the area but found another Rheum with high ratings so I'm on his waiting list, likely to see him in about 6 months. Until then, I'll plug on with my current provider.

This flare occurred in conjunction with flares of both my dermatomyositis (sine myostis), and Sjogrens. I've been told one AI condition could trigger a flare of another or all? Long story but I'm just beginning to get a tiny bit of strength back after over 4 months. I'm still very weak and tired.

All this caused severe weight loss. I'm 5' 6", before flare, was thin at 135 Lbs., now down to 102 Lbs. I'm trying very hard to eat but as many others discuss, have a lot of stomach troubles that may or may not be related to FM (to be discussed at next appointment). I'm still too weak to cook much or clean up & I live alone. Any advice on what to eat that would be healthy(ish), and help me put on some weight?

Also, unfortunately I had only started on with my most recent employer in July. Getting so sick in September was the absolute worst timing. Their policy for employees there less than a year is to grant unpaid medical leave for 6 months, but they would still need to post and fill my position. I've heard that the job has been filled but fortunately I'll still have health insurance as an employee through March.

I'm hopeful that in a month or so, I'd be ready to start a job hunt. I've depleted most of my savings being out so long. But I'm terrified that I'll have another flare like I had. Also - when I have the guts to start looking, do I disclose I have FM so they know being out for long periods is possible? I'm so torn about this. I want to be honest but know this would be a huge deterrent to any company.

I look forward to any replies, in particular about the weight loss/how to gain as well as what to do as far as a job hunt. Thanks all!

 

[sunkacola]

The Rheumatologist informed me that I'm her first FM patient. This worries me a bit, she's young but not 20s-30s, easily 40 so I'd think she would have other FM patients. Do you guys agree?

Greetings, and welcome to the forum.

Any one doctor, no matter how many years of experience they have, may or may not have seen fibromyalgia patients previously. It's possible this doctor has and did not know it, and it is equally possible that it just happens she has not seen any before. It doesn't really mean anything either way. But if you want a doctor who is well experienced with fibro, clearly you'd need a different one. Having experience with fibro might be a benefit, but the main thing is that the doctor listen to you and believe what you say and be willing to help you experiment to find out what works best for you in terms of management.

Any advice on what to eat that would be healthy(ish), and help me put on some weight?

I am a person who has to work at it to stay at a weight that is healthy, and I have always been thin. For a long time I couldn't get above 100lb and I am also 5'6". I found that no matter what I ate I did not gain weight, but then one day I got on the scales and found out that I was up to 112, and I have maintained that now for several weeks. I think in my case, my body is just going to do what it does and I cannot force it. In your case, you may just have to allow your body to do its thing as well, hard to say. But do make sure you are eating enough, and eating healthy foods, because no matter what if you do not eat enough healthy food your body will not have the strength to carry on and your symptoms will only be worse.

You might try making protein shakes. I find that when it's hard for me to eat I can always drink something. Just make certain that the protein powder you use doesn't have sugar in it, or you will be eating far too much sugar, which is definitely not healthy for fibro people.

As far as job hunting.........I think it depends in part on what kinds of work you do. If you do work that can easily be covered by other people if you need to take a day off (such as restaurant work for instance, where you can ask a fellow server to take your shift), then it may be less important that you may need time off sometimes.

But whether or not you disclose your issues in an interview, and what you say, is a matter for you and your own conscience. I have a tendency to be blunt and upfront and I would mention it. But if there is a lot of competition for that job, mentioning it may very well mean you don't get the job because they will hire someone with all the same qualifications who doesn't have a medical issue. On the other hand, if you do not disclose it upfront and then need to take time off and they find out that this is something you failed to mention, it can cause them not to want to trust you, and that is not good. I don't think anyone can tell you what to do in this situation, and it may be that you will have to decide whether to say anything and how much to disclose if so on an individual basis, depending on circumstances in the interview and type of work.

The most important thing is that you understand your body and your limitations and don't put yourself into a situation where you will be expected to do work beyond what you are reasonably able to do without causing yourself more pain and other symptoms.

I wrote a post of management advice that you might want to check out:

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[BrendaNY]

Thank you so much for your reply & sharing your experiences, I really appreciate it.

Protein shakes are definitely a great idea, thanks. I'll try to incorporate a couple into my daily menu. I don't know if it's the FM or Sjogrens but I am having trouble swallowing many solid foods so this will help me a lot! I had a swallowing test done at an imaging center but since it's liquids that they have you swallow, it looked fine. So I'm still waiting for an explanation on cause

I do have an odd question that perhaps you've experienced or come across... I mentioned that almost 5 months into the flare, I'm still sore, exhausted and weak but one thing I'm very worried about are my hands. For months, they burned and felt like I was moving through concrete like the rest of my body. Thank goodness, that symptom has finally subsided. But I'm left with very minimal hand dexterity. I have a very hard time gripping, squeezing and doing basics like cooking, showering, cleaning, etc., that I took so for granted before. I worry that this could be permanent? When I asked my current Rheumatologist at my appt this month, she just shrugged her shoulders when I asked. I guess that's what got me worried about her experience with FM. But perhaps this is something no one can predict?

In all my reading, it's clear everyone has a different experience, I'm just scared. I started sessions with a psychologist and have tried to start meditating regularly again but I'm almost always on the verge of tears and filled with anxiety. Hopefully in time, both will help me put this diagnosis into perspective.

Thanks again for replying, it means a lot that there is a place to turn to like this. I'm still very confused and trying to connect dots and figure some things out.

 

[sunkacola]

Feeling confused and anxious is very common with people who have been recently diagnosed, so know that you are pretty much where you could be expected to be. At the same time, your anxiety is guaranteed to make fibromyalgia symptoms worse, so anything you can do to alleviate the anxiety will be beneficial to you. If you find it difficult to meditate, try relaxing with soothing music, or try a guided meditation (many can be found online).

Fear and worry are detrimental. And, since worry -- anxiety -- is always about what has not yet happened and, in fact, may not happen, it is irrational and not beneficial in any way. which doesn't mean that you can just snap your fingers and make it go away, but it does mean that it is very useful to put your energy into whatever you can do to ease it rather than feeding it. Don't allow yourself to go into a squirrel-wheel of worry and anxiety; instead practice techniques that will steer your mind in other directions.

I don't think anyone here (none of us are doctors, and even if we were, we couldn't tell over the internet) can tell you what to expect about your hands, especially if the doc you have seen doesn't know. But what might help is physical therapy. If your insurance or pocketbook can pay for it, see if you can get a few appointments at a PT place for your hands. Since they are no longer painful, the main thing now is to increase their strength, and a good physical therapist can give you exercises that will do that. Even if you only go for one session, you can get the exercises and do them at home. I have found that diligently doing the exercises provided for me by a PT has helped me several times. If you do nothing, your hands may stay the way they are, but I'd be willing to bet that if you work at it your hands will improve.

You have found a good forum here to join. This is a safe place where people are not unkind to one another and where we support each other. We will do what we can to help you figure out whatever you need to figure out.

 

[JayCS]

Rheumatologist ... I'm her first FM patient... worries me a bit, she's young but ... easily 40 so I'd think she would have other FM patients.

Whether a doc can help in my experience depends more on how much they want to help than what they already know.
My most helpful docs were a sleep lab psychiatrist and my cardio.

another Rheum with high ratings so I'm on his waiting list, likely to see him in about 6 months. Until then, I'll plug on with my current provider.

I've found it was always good to get a 2nd opinion and then decide who's best for what.

This flare occurred in conjunction with flares of both my dermatomyositis (sine myostis), and Sjogrens. I've been told one AI condition could trigger a flare of another or all?

Well Sjögren's is autoimmune, whilst dermatomyositis only appears is similar, is not proven to be one, and fibro isn't.
I do think it's possible that flares of one condition triggers flares of others.
However my experience is that the connection is less, the flares are usually separate. If flares of certain symptoms seem the same then that has turned out to be an underlying mechanism that is connected. (E.g. fibromyalgia with low serotonin, MCAS with high histamine, serotonin and histamine counteract each other, so increasing serotonin with GABA can help both.)

I'm trying very hard to eat but as many others discuss, have a lot of stomach troubles that may or may not be related to FM (to be discussed at next appointment). I'm still too weak to cook much or clean up & I live alone. Any advice on what to eat that would be healthy(ish), and help me put on some weight?

My experience is to best treat stomach troubles as that, cos putting it down to fibro doesn't help.
First questions for me are usually how much of it is stomach and how much gut;
if stomach is it hyperacidic or hypoacidic;
can I go without antacids, cos chronic use of them can often make it worse;
identifying and avoiding triggers until all are gone, then trying to re-introduce low and slow.

For eating without cooking I use gluten-free muesli, dried fruits and nuts, raw veggies, ready cooked green beans, bread rolls with bits of good cheese, best for me is goat & sheep, yogurt & dark chocolate help fill me up ... - I guess the fruit and nuts help weight most.

I am having trouble swallowing many solid foods so this will help me a lot! I had a swallowing test done at an imaging center but since it's liquids that they have you swallow, it looked fine. So I'm still waiting for an explanation on cause

My Schatzki ring = stricture made swallowing difficult long before they detected it (via gastroscopy), so you might want to repeat, if you think it is a stricture too. With Sjögren's I can imagine the dry mouth / saliva is a problem too.
At which position do you think the swallowing is the problem, nearer to the mouth or nearer to the stomach, and what problems occur?

But I'm left with very minimal hand dexterity. I have a very hard time gripping, squeezing and doing basics like cooking, showering, cleaning,

I agree with sunkacola about trying physios rather than docs. Actually I prefer youtube physios: quicker, cheaper, more varied... just put in the symptom and the give loads of ideas what it is and what you can try.

When I asked my current Rheumatologist at my appt this month, she just shrugged her shoulders when I asked. I guess that's what got me

No, can't be expected from a rheum or any doc, in my experience.

I started sessions with a psychologist and have tried to start meditating regularly again but I'm almost always on the verge of tears and filled

Great start. Hope they're right for you. Good if they know how to approach pain, many don't, some do. Acceptance and commitment therapy with "radical acceptance" may be one of the best approaches for us, in Germany we can now get an online course paid for by insurance, cos there's enough medical evidence for it to help.
Meditating may not be the right form of relaxation for you at the moment, praps try all the various types. I prefer NSDR cos it's guided and many different quick forms of relaxation, gets me down and asleep quick.

 

[CAB]

What is NSDR?

 

[sunkacola]

What is NSDR?

You can use your search engine to look this up, which is a lot faster and a lot easier than asking someone here to do it for you. But this time I did it for you. It stands for non-sleep deep rest.

 

[BrendaNY]

My experience is to best treat stomach troubles as that, cos putting it down to fibro doesn't help.
First questions for me are usually how much of it is stomach and how much gut;
if stomach is it hyperacidic or hypoacidic;
can I go without antacids, cos chronic use of them can often make it worse;
identifying and avoiding triggers until all are gone, then trying to re-introduce low and slow.

I've had IBS-D for over 15 years, which has become much worse the past 2. I've had every test, tried every diet and no cause has ever been identified. My mother has the same issue so I've just accepted this as a quirk with my genetics & body. Unfortunately & to my humiliation, I had an accident running to the bathroom at work the last day I was there in September as I was dealing with all the flare-ups I was experiencing. So I was almost hoping there would be some connection so that there was finally an explanation. I can't imagine going through that again, I was mortified.

Great start. Hope they're right for you. Good if they know how to approach pain, many don't, some do. Acceptance and commitment therapy with "radical acceptance" may be one of the best approaches for us, in Germany we can now get an online course paid for by insurance, cos there's enough medical evidence for it to help.
Meditating may not be the right form of relaxation for you at the moment, praps try all the various types. I prefer NSDR cos it's guided and many different quick forms of relaxation, gets me down and asleep quick.

Thanks for the tip on NSDR, I just tried one and it did help a little! I think I'll incorporate this into my daily practices. My therapist also suggested Tapping so I'm looking into that as well. It's great that there are so many tools to help with anxiety out there.

 

[BrendaNY]

My Schatzki ring = stricture made swallowing difficult long before they detected it (via gastroscopy), so you might want to repeat, if you think it is a stricture too. With Sjögren's I can imagine the dry mouth / saliva is a problem too.
At which position do you think the swallowing is the problem, nearer to the mouth or nearer to the stomach, and what problems occur?

My swallowing was definitely related to the Sjogrens lack of saliva at first. I'd have to "gulp" a swig of water to get each bite of food down. But the Sjogrens flare has calmed and I have saliva back but still experiencing difficulties. This is definitely more toward the mouth - it's gross but food/medications will stay stuck in my throat and sometimes even come back into the mouth. In particular, breads that become dough-y and meats. Sometimes pills (especially those that "Float").

I agree with sunkacola about trying physios rather than docs. Actually I prefer youtube physios: quicker, cheaper, more varied... just put in the symptom and the give loads of ideas what it is and what you can try.

Great tip, thanks!

 

[Auriel]

Hi Brenda! Welcome to the forum , I found these for you, gluten/wheat, sometimes dairy product's annoys my fibro (as does caffeine/coca cola/coffee alcohol and sweets, maybe have a food/drink test to see if anything makes it worse (or improvements when taken out) here's a list I found for you (also please don't push if feeling in pain or fatigue is too much)
️

 

[JayCS]

What is NSDR?

Always good to ask back here, in my opinion, but I'm not sure if you now know what you wanted to?
Also called "yoga nidra", in short it's a collection of various modern relaxation techniques that can relax intensely, esp. if we tend to get distracted easily, and can even be used as a sleep substitute. Does that help?

 

[JayCS]

I've had IBS-D for over 15 years, which has become much worse the past 2. I've had every test, tried every diet and no cause has ever been identified. My mother has the same issue so I've just accepted this as a quirk with my genetics & body. Unfortunately & to my humiliation, I had an accident running to the bathroom at work the last day I was there in September as I was dealing with all the flare-ups I was experiencing. So I was almost hoping there would be some connection so that there was finally an explanation. I can't imagine going through that again, I was mortified.

Well I'd guess like in my case there is a better "explanation" than putting it down to fibro: Your gut isn't tolerating specific foods. The cause medicine can't usually identify, no test, no doc can help, at most a nutritionist. The prevention solution is one of the many kinds of elimination diets, have you tried any? And as an alleviation solution some of the best supps for diarrhea in my experience are S. boulardii and psyllium (with little water; for constipation with lots of water).

Thanks for the tip on NSDR, I just tried one and it did help a little!

Good! Try different speakers. I need a woman with a soft, slow voice, for me Ally Boothroyd is best.

I think I'll incorporate this into my daily practices. My therapist also suggested Tapping so I'm looking into that as well. It's great that there are so many tools to help with anxiety out there.

With tapping you mean EFT, emotional freedom technique I think? I found it OK-ish, not too powerful, but comforting in some situations.

 

[JayCS]

My swallowing was definitely related to the Sjogrens lack of saliva at first. I'd have to "gulp" a swig of water to get each bite of food down. But the Sjogrens flare has calmed and I have saliva back but still experiencing difficulties. This is definitely more toward the mouth - it's gross but food/medications will stay stuck in my throat and sometimes even come back into the mouth. In particular, breads that become dough-y and meats. Sometimes pills (especially those that "Float").

Hmm, then it's no stricture, and same may apply for getting food and pills down easily... ("gross alert"...):

I do need to gulp each capsule (and that's 60-90/d) and if taking with meals better before them and leave a few minutes. But with practice the gulping is pretty effective now, I've even managed to get under 2L/d without a full block. But realized I should increase again for other reasons (I was up to 4L/d in autumn, which was annoying my bladder of course). If I drank with food that'd be much more and a big problem.

Not sure how/why it comes back up in your case, so yours may be a little different. When i get a full block I need to force it out cos it's stuck, like steakhouse syndrome. It's always chewed well "enough" (for normal people), but the bolus gets too large and sticky.

Other suggestions:
I collect saliva beforehand. In between if my mouth is dry I spread it along the gums. Salt water is for me the best easiest one of 6-7 suggestions of an elderly female Indian youtuber I like to 'consult'. My tooth cleaner reminded me last week that imagine our favourite meal can help get the saliva to flow.
I chew thoroughly: big mouthfuls of (gluten-free) muesli the other day I chewed 150 times, often it can be up to 100 times. Often I'm better if I'm doing something else, but not in a rush.
Of risky foods like raw carrots and sweet potatoes I take small bites. I had to stop eating them a time. Tofu is one I stopped cos of that as well as histamine. Every block I wrote/write down together with what I think was the problem. Unexpected ones are cold out of the fridge, like yogurt. I don't think cooked food is better for my swallowing than raw, which I tolerate and like more. I don't ever eat meat for other reasons, but steakhouse syndrome as the name says is something very associated with meat fibres - praps some types are better than others? And I've turned from wholemeal bread to wholemeal bread rolls for appetite, and realize that the finely ground ones (despite 100% wholemeal) are fairly easy for me to get down. I'd think whitebread would be stickier, I tried to eat some half-whitebread organic ones the other day and it seemed so, apart from me hating the taste(-lessness), so I put them away for the local goats...

 

[JayCS]

Hi Brenda! Welcome to the forum , I found these for you, gluten/wheat, sometimes dairy product's annoys my fibro (as does

For men, too, maybe, so I'm taking a peep, altho I know I shouldn't....
Aside from allergies or intolerances a few spoiling/warning comments:
Avocado is FODMAP,
egg yolk and/or white may be a problem,
milk / yogurt / cheese would be dairy (milk worst for me), aged or mould cheese: histamine,
for hummus peas and/or beans: digestion and/or histamine, and common spices like garlic would cause hyperacidity,
whole wheat would be healthier than not whole, spelt might be a bit better, but all with gluten... whilst oats have no own gluten, just may be "contaminated" from other cereals, so likely OK,
granola - ooh, I don't know that (except the word), sounds interesting, similar to my muesli,
from any pasta, incl. wholemeal, I get hyperacidic stomach burn, also gluten,
beans can be a digestion problem, and many types a histamine problem (green beans seem best),
potatoes a solanin problem,
some nuts (esp. walnuts) and definitely tofu and all soy a histamine problem.
Apart from that, a brilliant selection! (And you might think a complicated life of someone who has to know all this )

(Just found out that avocado production has many issues that may make people think again about buying them.)

 

[sunkacola]

I think it's important to note that in the above post, @JayCS is only speaking of what is a problem for him, not for everyone with fibromyalgia.

I find avocados are a very good food for me, for instance, and I have no problem with dairy in any form. There are lots of gluten-free pastas available these days (at least, in the US). Beans are not a digestion problem for many people, nor potatoes, nuts, etc.

Bottom line is: test things our for yourself, people. Only you can tell what works well for you and what does not.