New to the Group/ my journey

Hello!
I just want to start by disclosing that I haven’t had my first rheumatology yet, but if it isn’t fibro or auto immune, than I don’t know what else this is! I’m scheduled for FEB. 5, but on a wait list for earlier appointments if one opens. My journey started in 2014. I always had muscle and joint pain. Never localized to one area. Joints and muscles everywhere are stiff and painful. I suffer from crazy fatigue all the time. I mean I can get 8-10 hours of sleep and wake up feeling like a bus hit me! I also wake with pins and needles or numbness in both arms elbows to fingertips or sometimes just fingers. I should also mention I’ve been diagnosed with depression and anxiety for years now too. I see my general practitioner and psychiatrist. My GP has sent me to a myriad of specialists who all tell me my blood work and tests “look fine” with the exception my inflammation markers are up for some reason. Im so sensitive to pain that any palpitation tests the doctor does on your skin make me want to cry. The most recent visit was my adventures with a neurologist who tried injections in my back for pain with no success. The neurologist tried a muscle conduction test in my hands and arms. At the “1st level” of conduction (she told me there would be discomfort” I almost jumped out of the chair and ripped the wires off it hurt so dang bad! GP told me to try “massage therapy” to relieve pain. That was a disaster. The massage therapist tried but massages hurt and didn’t seem to help. At this last GP appointment my doctor said I need to quick taking Tylenol and ibuprofen for pain because my liver enzymes are high, but didn’t give me an alternative. He basically shrugged his shoulders and said I’m sending you to a rheumatologist to see if they can help. The one he is sending me to I read reviews on and they were not good. I’m looking now at U of M rheumatologist to see if I can get in there instead, but so desperate to get answers I’m holding onto the Feb. 5 appointment in case U of M can’t see me for months. I need answers and I’m tired of general doctors and psychiatrists and specialists making me feel like the pain is in my head. Thank you for listening! If you have suggestions on what to look for in a good doctor let me know! Wish me luck on finding an answer soon.

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Hiya Scoronado, and welcome!

Sure does sound a lot like fibro, but then other things do too, and if your inflammation markers are up fairly high, then you definitely need at least a rheumatologist to check that field, like is happening now. (Strange you’ve been sent ‘everywhere’ but there, actually…)

I am very much in favour of going for parallel appointments, even tho it’s a strain and thus usually a trigger, as you’ve experienced. Did that with my rheums too, cos the main one took 5-6 months.

Sure we don’t like the feeling that this pain somehow isn’t “real”. Everyone incl. ourselves is influenced by medicine normally being able to find the causes for pain and by the thought that it might be imagined. So sometimes even we mistrust our perception. All experts on pain (and fibro) however say this pain is real. However we can double it by letting it cause us to “suffer”, and that part we can reduce or stop with “radical acceptance”, serenity prayer style.

So yes, a defined word for our condition helps. The treatments may be slight, if myriad, but the diagnosis points us to them, and then even more our own analysis of our symptoms in regard to triggers/treatments.

My >50 docs have hardly been helpful. But all of them were good in their own way. For the diagnosis we need someone who knows fibro. A web search may be a starting point, but no guarantee. The U of M of course has experts on it, they’re doing quite a bit of research on it. A good doc would be one who listens closely, uses the 2016 ACR criteria, may use the 1990 tender points test, but only to confirm, not to disprove, in your case would know that he needs to try to exclude all other conditions with similar symptoms, but also bring up and not disregard fibromyalgia right from the start. Best I’d judge those that take into consideration that it can be fibromyalgia and perhaps something else, like the 2016 criteria says is well possible. You suggest autoimmune: Sjögren’s has similar symptoms, but often dry eyes and mouth too, but a chief rheum in a rheum/fibro clinic once said to me: No matter, you still have to find things that help yourself. And I think he was right. But for other autoimmune diseases that’s different, so well worth excluding.

All that said, whilst you’re looking for a diagnosis it’d be important to learn the fibro basics, like pacing, tracking and analyzing your symptoms yourself (no doctor will be able to do that in detail anyway) and treat each symptom singly (chances are you’ll end up with that anyway, whatever it is).

Massage by the way is for most of “us” (with any kind of chronic pain) a bad idea, esp. at first. We at most need gentle, listening manual therapists (like osteopathy, acupressure, praps acupuncture) but the main thing for any local pain I’ve found is gentle short but regular adjusted stretches (youtube physios) etc. and the best for any overall pain is pacing, for both also trying pain supps.
And you’ve said depression, non-restorative sleep and fatigue which would all be some of the possible main symptoms besides widespread pain. Stiff is also a common one. Good you haven’t got insomnia, but that doesn’t disprove fibro.

As a teaser for analysis, your “joint pain” if arthritis etc. has been excluded may well be the tendon insertion points around the joints, which you can best find out by pressing all around and identifying hurting spots. In my experience these can be well treated by gently pressing and holding them, whether radiating trigger points or just sore.

Another teaser: Your pins and needles or numbness after sleep might be circulation or nerves, but in either case I’d try to change your postures, mattress and pillows etc. first.
Waking up hurting I’ve coined “post postural Ache”, it’s similar to my Ache after activity (which in ME/CFS is called “post exertional malaise”), but hurts from not moving. So quite a few of us have to move a bit, even at night. Two of my workarounds are sleeping in stretched postures (recovery position but with slightly arched back) and stretching before I get up (I used to stretch outwards and backwards more, at the moment curling up into a ball for up to half a minute is faster).

Hope something helps. And I think you reaching out now already is brilliant (I should have done it that early too) and means you are already finding answers, even as they always do, will throw up 10-fold questions… :open_hands:

Thank you for the kind words and advice! So the GP did t sent me to a RH specialist right away because he ran some bloodwork test for rheumatoid A on me and the results came back neg. for indicators except for the high inflammation markers. My insurance requires a referral and my GP stated in order to get a referral to a RH doctor he needed something more than im in pain all the time. :woman_shrugging:. The neurologist ruled out any sort of nerve damage or pinched nerves. The neurologist did a ton of x rays (some of which I’m still paying on, thank you insurance company) and couldn’t find anything. The muscle conduction tests are just too painful to complete. I didn’t know a massage therapist wasn’t a good idea and was desperate to relieve the pain so I tried it. Stretching does help, although the stiffness makes it hard and painful sometimes. At this point I’m just desperate for answers! I hate feeling like doctors look at me like it’s in my head or I’m making pain up. In 2019 I lost footing in the steps on the porch (I’ve gotten pretty clumsy/ uncoordinated as time went on) and fell and broken 4 transverse processes in my back. Since then things have amplified pain wise. I was in a brace 5 months. Pain has amplified since then and that was the reason for the referral to all the other specialists. Doctor thought it was related to that. But neurology, osteopathy, X-rays all of it can’t pin point why I hurt. Hoping to get answers here come Feb 5, and will keep you posted! Thank you for the advice and information. I’m very new to the journey and willing to learn!

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Oh, there’s so many therapies I tried cos I didn’t know! And it’s just different for everyone and sometimes at different times, or who does it and how: I forgot to add that actually deep tissue massage hurt me, but also lead to great relief after, unexpectedly, and that was in my first year of fibro.
The art of stretching is to always keep under the pain limits, at most allow pain that goes away immediately you stop. But try to do it alternating for all relevant body parts “all day”, like at least once an hour. Like I have a swiveable adjustable bar stool for eating, but usually sit twist-stretched on the floor in alternating ways.
A pain doc once recommended yin yoga to me, but the long stretches if you do it “properly” tore me apart. Took a bit of time to realize I’m the boss and the expert, I do it my way and listen to my body, not to any doc or therapist.

You mean orthopedist? An osteopath will much more likely find where it hurts. For “diagnosis” if docs can’t find anything often the manual therapists like osteopaths are better.

Good! :open_hands:

I have been to all the “ortho” docs. I’m not sure which one did what anymore. Lol. They all said the same thing though, “everything looks ‘normal’. Stretching is hard though. I get lots of crack snap pops when I do stretches. Everywhere from neck down to toes. I’m finding I have to be my own advocate for the pain too. A lot of the doctors and therapists don’t seem to listen. I’m hoping the RH doctor listens and BELIEVES me when I say I’m in pain. For now, I sit on my little heating pad and take Tylenol and ibuprofen (even though advised not to) to control the pain. I’ve heard CBD oils and creams work? Any thoughts on that?

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Ah, I forgot you have doctors of osteopathy, DO, too, here an orthopedist is an MD who may occasionally add on osteopathy, but generally going to an osteopath is alternative medicine and hardly paid for by state insurance.

But an osteopath would be a functional doctor who treats you with manual therapy and supplements, and it doesn’t sound like you’ve had that in any way. They also would never say ‘everything looks normal’ if you say you are in pain.

CBD is another one that only works for a few, like them all, maybe a third. I never tried it topically, but orally even one 2mg drop zombified me that I couldn’t think incl. work. Others say that only MMJ, i.e. CBD together with THC, will it work. People who know their way around this recommend to find a shop that knows their stuff and tell them exactly what you want it for, and if that doesn’t work, tell them, so they can find a different strain. Not possible here, if you can get allowed to use MMJ you need to take what you get prescribed.
But yes, it’s something to try. Best in a small amount first, or be prepared to pass it on. I don’t see a reason for it not to be one of the first things to try, whether naively (“see if and how it works”) or educated (“let’s try to get this to work”).
We just have to know it’s luck to find anything that works without harming, i.e. a chance of praps 10%. The end point may like in my case be 100s of “treatments” per day, with each seeming to contribute not even 1%, but without that one it’s nothing. So the sooner we start the better. In the beginning many things will go wrong. So better to be very careful: start low, go slow, watch and learn. Use any previous knowledge of your body and adapt to its new condition. Like I was pretty sure I wouldn’t tolerate meds, cos I never have. Turned out the side effects of pain killers and some supps went far beyond my imagination. But I felt obliged to my employer and my wife to try mainstream first, but to stop as soon as possible - on some things like spinal injections my wife had to stop me, I was wanting to be brave, she sorta said ‘no use killing yourself in the process’…
In the case of CBD it’s important to decide and keep a handle on how much brain dullness I want, how much additional fog (personally, “I prefer brain with pain rather than no pain with no brain”, cos I need my brain to research, analyze, be mindful, self-caring and to find the roots, instead of suppressing the pain sensation).

I see the difference now. No it was a bone specialist. Orthopedic something or other. Yeah I’m not a fan of CBD or MMJ at all even though it is legal here in Michigan if you need it. Plus my job is very particular about anything mmj or CBD based. I hate brain fog among other issues I already deal with so that doesn’t sound like it would be an option. I want quality of living not more brain fog or other side effects. Honestly I just want to be able to get a full nights rest and not wake up feeling like a truck hit me or that I need to sleep another 12 hours.

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Sleep is a brilliant place to start for quality of life, and it might help a bit with fatigue and pain.
Without knowing exactly how your night time isn’t working, the more modern recommendations of Andrew Huberman (and/or Hugh Selsick) are I think better starting places than more traditional ones, which are things we’ve tried and didn’t work. This was a game changer for me from last spring on. I needed someone expert to tell me this, even tho it does feel like what grandma always told us. But the scientific basis helps us understand exactly how and why this can help. (And “grandmas” never told me to look to the sunlight early or use daylight lamps when not possible.)
Toolkit for Sleep - Huberman Lab and podcast / youtube etc.

Dear Scoronado0881, I have reason to believe you have 'debilitating fibromyalgia with chronic fatigue syndrome. TRY THE F/M-a test done at
EpicGenetics… Go to their website. If you want to be tested you must submit a blood sample. The website will instruct you to exactly what you need to do. They have a physician there that will write the Rc for your blood to be drawn and tested. I had chronic pain, fatigue that didn’t go away. Have been suffering for 17 years. My score was 89/100 which indicates strongly that I have fibromyalgia. Please try them and get some answers. I don’t think it costs anything? I am pretty sure it’s covered under insurance. But I never saw a bill… Good luck and please listen to your body… Much love and aloha Liz
PS. The FM/-a tests for chemokine and cytokines found in patients with fibromyalgia there’s a deficiency of them. These two C&C’s are also what Covid thrives on. You/we may get covid but the symptoms will be much less than the person without the deficit of the two small proteins chemokine and cytokines. (I am a RN and I am urging you to get answers because it sounds like what I experienced… Do no be afraid of taking opiates for your pain. Pain can drive you insane and make you want to die! I am not an opiate advocate but there are instances where they serve a purpose and people in pain day after day need and deserve some relief to improve their quality of life! Peace!..Let me know how you’re doing… Mahalo!

Thank you for the support and suggestions! I will look into it tomorrow. I’m counting down the days till I see the rheumatologist! Today was an especially rough day. I know the GP doctor said no more Tylenol or ibuprofen but I broke down today and took ibuprofen for the pain. I live in Michigan and the cold makes it worse. We had an especially cold week and the weekend was no better. I hurt everywhere today. I will update my journey and hopefully answers as soon as I get some!

My dear Scoronado0881, I am crying for you right now because I know how much pain you are in! If your docs told you not to take Tylenol/Ibuprofen and NOT give you anything for your pain is in my opinion criminal! People have pain and pain does not go away on its own! Period. Or, at least in people such as are on this site.
I have another suggestion I thought of: Kratom. It is from Indonesia (illegal there) but you can get it off some reputable websites here in the US. There are different strain which produce different effects on the body. Comes in capsules, powder and not sure but maybe tablets. I tried some years ago and I felt like a million buck! Thought I had found the holy grail only for it to not be effective the next time I took some. I am okay on my current medication regimen so I haven’t taken / used any in quite a while, but this is something you might want to consider. You can talk to them and tell them what you want if for and they can guide you to the right strain. It’s worth a shot. I used the powder
“Toss & Wash” method. It tastes like dirt but if you chase it with a little OJ you should be good to go… I just wish you the best and can only hope and pray that there’s someone out there who’s willing to give you some relief! NO ONE SHOULD BE IN PAIN, ever! Been there, not fun! Finally got a PCP who understood me and my pain. I can only hope and pray that that someone is out there for you. Praying only good will start happening to you from this day forward! Much Love & Aloha ~ Liz

You have a higher likelihood of having fibromyalgia if you have a higher score on the 2016 ACR criteria I referred to above. This has been thoroughly validated by many, an easy read to check yourself, and doesn’t cost anything, all as opposed to Gillis’ highly controversial cytokine FM/a-test, see this thread here.

Thank you to everyone who has been supportive. I honestly think my pcp thinks I’m over reacting or it’s in my head. He told me to try the gym and that will work out the stiff muscles and joints. I’m feeling a little better this morning but the contributing that to the heating pad I’m on. I did wake up “foggy though”. I will keep everything you both suggested in my pocket and I’m about to call the RH office again to see if they had any cancellations I could take. I will keep you posted.

Oh dear, with that message of work out helping stiffness, praps even “pushing thru”, he seems to be disqualifing himself as unknowledgeable. Maybe you’re right about what he thinks… at the moment…
However I’ve experienced that quite a few docs don’t mind being educated. But for that we need to know our stuff and explain well. We need to practice describing our symptoms after triggers in more detail and point out why this won’t work. Sometimes we have to try what they suggest to prove it to them.
There are pamphlets etc. online, or you can take the ACR criteria to them, but I guess most won’t want to read anything, mine never do, they want me to put it in a nutshell (and best me tell them what to give me, that’s the good ones that I’ve whittled it down to and kept).

What is true is that if we start very low and very go slow, some kinds of gym exercises, stretches, yoga, and other classes may be OK for us. And it is not impossible that gentle workout improves certain kinds of stiffness.

Me: Most aren’t for me, but with just fibro I was still able to sometimes go to the gym. It didn’t improve any symptoms tho, esp. not my kind of stiffness, it just kept me from de-conditioning. Even without gym I’ve managed to keep that up, and possibly I may try gym again, if my energy levels continue to be at 30%, instead of 10% (my stiffness better too at the moment, but in a weird way, which shows it’s not as simple as they make it).

Edit: Thinking about kinds of stiffness, their possible reasons and what exercising might do to them…
Usually our stiffness is after longer postures, our tendons and/or muscles seem to “seize up” and “stiffen up” from not being used. If this tendency has been increased by de-conditioning, then stretching would help. If it is due to the fibro, and/or possibly to do with inflammation / neuroinflammation, then exercising normally rather than gently would cause a flare rather than help.
If I twist-stretch outwards and backwards and/or inwards and forwards (e.g. into a “ball”) I can quickly resolve most of the stiffness for the time being, to get up, but doing this regularly doesn’t decrease the tendency to (severe) stiffness much.

Greetings JayCS, I am really interested in the 2016 ACR criteria. I honestly thought Dr. Gillis was amazing, at first. Now, I am a wee bit skeptical. They did conduct a trial with post-biotic this last August. I was a candidate; had to go to L.A. for one day to find about about the study. I wasn’t able to contribute due to hip surgery. HAS ANYBODY HAD LUCK WITH ‘POST-BIOTICS’ AND THEIR PAIN?!
Thank you Jay for your valuable information about the 2016 ACR criteria. Going to check it out after sending this. Enjoy your day all! Aloha ~ Liz

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Yeah, he cleverly stylizes himself as being our saviour, the only doc who wants to help us with fibromyalgia by revealing a truth that no one else does, a bit like clickbait youtube videos that have the cure for fibro (or similar).
But actually he knows little and has done little on fibromyalgia
As opposed to Frederick Wolfe and the others who contributed to the development of the ACR criteria and re-checked it.

They’ve also been used as the basis criteria of the 2022 UK guidelines, the only difference being that there they omit the bit that even if something else explains some or all of our fibro symptoms we can still have fibro and something else. I personally think this is a sensible.way of diagnosing, cos it leads us to a greater variety of things to try out on it.

I had to check what postbiotics are, according to Harvard:
“Healthy postbiotics include nutrients such as vitamins B and K, amino acids, and substances called antimicrobial peptides that help to slow down the growth of harmful bacteria. Other postbiotic substances called short-chain fatty acids help healthy bacteria flourish.
You can increase the amount of useful postbiotics in your system by increasing your intake of fermented foods, such as kefir, tempeh, and kimchi. Focusing on getting enough of the foods that promote a mix of healthy gut bacteria may help improve your overall health.”

In short, I take quite a few of these (B12, K2, 3 amino acids and 1 derivative) and GABA is the main postbiotic that helps me a lot in 10 areas of my fibro, as I obviously have low serotonin, I just didn’t know it was one. I can’t say any other of my other 40-30 supps help my fibro, esp. not my main problem, energy, only those for sleep. I’ve tried various enzymes (expensive!) with only incidental success. I shouldn’t increase fermented foods cos of their high histamine vs. my MCAS.
Generally I’m skeptical that a whole category, like “postbiotics”, will help people with fibro, in my experience it’s necessary to figure out which ones exactly. That’s why my 30 supps at the moment are all individual and dose-adapted.
I’d encourage anyone having tried the basics to look into GABA, with the help of Trudy Scott’s blog, starting with her amino acid “questionnaire” (checklist), more details here, however it’s a bit tricky.

Greetings Scoronado… Been thinking of you and hoping you’re finding relief and answers. When you get a chance how about an update!? Wishing you only the absolute best! Aloha, Liz

Good news sort of?? I had my first appointment to go over blood work and nothing indicated lupus or rheumatoid arthritis, however there are more tests and X-rays and ultrasounds to be done. That is the next appointment. The RH doctor said she’s leaning towards Fibro as the culprit but doesn’t want to put the cart before the horse yet. I feel better knowing I’m getting some kinda answer at least.

Oh so good to hear back from you so quickly! Glad you are making progress! It’s frustrating I know but at least you’re moving ahead. I just wish I could take your pain away. Pain is awful! It robs you of the happiness you would like to feel!.. I had an awful fibro episode this morning. The pain took my breath away! I seriously had to consciously think about breathing! Kept holding my breath! It’s unbelievable what pain can do to someone! I am extremely fortunate that my husband finally and I mean finally gets it! I have debilitating fibromyalgia! I wish only the best for you my friend! An update would be appreciated as your journey continues. I wish to support you the best way I know how… Aloha, Liz

Update: my lab work came back and my ESR? Is 40. My C-proteins was .75? Not sure good or bad but I meet doctor next Wednesday for more tests and discussion of bloodwork.