Fibromyalgia, PCOS and Hashimotos

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Slidee

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I was diagnosed with fibromyalgia back in 2010 along with PCOS and just got diagnosed with Hashimotos this year. I’m not sure if it’s just fibro or combo of all of it, but I deal with chronic fatigue, joint and muscle pain, muscle cramping, chronic headaches, dry eyes/mouth, lower back pain, morning stiffness that can last over an hour, and just body aches. I feel like I have the flu at times but I know it’s not the flu. I have tried Cymbalta, Amitriptyline, and no relief. I am trying Savella and low dose naltrexone and it’s only been a month but still no relief. I was tested for RA and Lupus and negative but I had a positive ANA but it just went away. Just wanting any tips if anyone can offer. I work full time, have a child, and main care taker of the house as my husband works a lot of 12 hr shifts. Sometimes it’s hard to get through the day and at the end of the day I can barely move I hurt so much.
 
Hi Slidee, and welcome to the forum.

You have found a good place because all of us what to help each other with tips, support, and information.

This is a good place to start for tips on managing your life with fibro.:
 
Hashimoto's covers your dry eyes/mouth and chronic fatigue - you can get an oil medication for the eyes that will; help or just heat up a hand towel and place it over the eyes for 15 minutes - that will get the natural oils running in the eyes some including me loose they eye lashes and have the skin cells not fall from the skin as they would normally do but tie up and fall off in small slabs this can happen across the forehead, on the nose and just on the upper parts of the cheeks and behind the ears - this is the autoimmune system going mad - a cortisone cream will; help this the other problem with Hashimoto's is nail splitting You don't get pain as such in Hashimoto's
Naltrexone is an opioid antagonist. so I am not too sure why you are taking it.
if you have hashimoto's then you should have had a thyroid panel test at least for TSH - there are no actual medication you can take for Hashimoto's only medication for its many varied symptoms
 
Hi Slidee, welcome from me too!
You're asking for tips and have posted under "do I have fibromyalgia?" too, so here come my ideas....:
I was diagnosed with fibromyalgia back in 2010 along with PCOS and just got diagnosed with Hashimotos this year. I’m not sure if it’s just fibro or combo of all of it, but I deal with chronic fatigue, joint and muscle pain, muscle cramping, chronic headaches, dry eyes/mouth, lower back pain, morning stiffness that can last over an hour, and just body aches. I feel like I have the flu at times but I know it’s not the flu.
All of your symptoms incl. the flu feeling are very compatible with fibro alone, and typical, incl. dry eyes/mouth and chronic fatigue - I have both and have nothing else to explain it. If you'd need more convincing you have fibro, you could fill in the ACR 2016 criteria questionnaire (or the "test" on the main site of this forum). Dry eyes/mouth and morning stiffness are the only ones of your symptoms not listed there as being diagnostic, but in all my / our experience it is. - My variety of stiffness goes away after 5' of movement, but is there the whole day every time I don't move for 5-10' or longer. So I'm constantly on the move, twist-stretching in all postures and now I've developed a gentle slow movement most of the day, with little rest.
Whether dryness is from the Hashimoto's or not, as @johnsalmon suggests, might be decidable from the association between symptoms and the diagnosis. If you remember or feel the dryness is new and the condition is too, then that would make Hashimoto's more likely. However in my experience it doesn't matter much what comes from what, since each of my symptoms, esp. these 2, have to be treated singly.
A 3rd explanation for those areas of dryness is Sjögren's syndrome, a 4th is sicca syndrome (in my case also skin, throat and stomach hyperacidity, not gut, that'd be IBSC). But the labels don't help me.
Same goes for the chronic fatigue if you had it all along.
Comparing with PCOS symptoms I'd suggest all the symptoms you've listed can be better explained by fibro than by PCOS. More overlap would be in mental aspects like depression or anxiety.
I have tried Cymbalta, Amitriptyline, and no relief. I am trying Savella and low dose nal-trex-one and it’s only been a month but still no relief. I was tested for RA and Lupus and negative but I had a positive ANA but it just went away.
Wow, that sounds like you have docs that know pretty exactly what they are doing. As far as meds go, duloxetine/Cymbalta, amitriptyline and milnacipran/Savella are some of those that mainstream studies have proven as "not completely useless for some" and you have 2 of 3 meds approved by the FDA for fibro. Judging by that selection I'm just a little surprised that pregabalin/Lyrica wasn't tried before Savella, as it is also FDA approved and studies say it's quite a bit better. So I assume that there were well considered reasons against Lyrica.
Low dose naltr-exone (we have to bungle the word to punt(?) the moderator queue) also means your docs know what they are doing, because the risk for not harming not helping is possibly as high as the others. @johnsalmon: L.D N (we have to bungle the abbreviation too) is only <10% of the pill that's used as opioid antagonist and in that concentration (or 1% or 20%) has been found helpful for fibro pain and similar. However only a few small partial studies have confirmed this, so it's mainly based on many anecdotes. Looking at the forums, I've found it to be about equal whether it helps or harms, so have considered trying it myself. My latest trial with 3% of T4 for thyroid (I may have an inkling of Hashimoto's too) went so badly that I think I'll be dropping it from my list. (The 3% by the way was inspired by my many intolerances plus the low dosage used with nal-trexone, I played with doses of 1-5% and found big differences, 3% had the best positive effect, but several significant side effects.)

No relief? - Well, in my experience you'd be lucky with that, since most of the meds I tried greatly harmed me, doubled the trouble. I can imagine tho that they did harm you, you just didn't mention that bit.

Positive ANA and it went away? Could that be associated with the Hashimoto's? My autoimmune bloods have always been fickle too - coming and going or not enough over the top to seem important. But it's a question I've put to my new onco specialist, as I don't believe they'll find anything else cancerous, but maybe he has an idea.
Just wanting any tips if anyone can offer. I work full time, have a child, and main care taker of the house as my husband works a lot of 12 hr shifts. Sometimes it’s hard to get through the day and at the end of the day I can barely move I hurt so much.
Wow. Wow. And it sounds as if you feel you have no choice. I can only say if I'd stopped working full time in time, instead of pushing thru, I might not have crashed into the full flare I've been in since (3y+) which forced me to drastically cut down. I hope you've set aside some time every week to think and discuss how you can cut down even more on all areas. Apparently you start off each day better after or besides the hour of morning stiffness. If you'd be starting the day barely able to move cos you hurt so much, that would be the backlash from the previous day you need to keep down or best avoid completely. As you have the responsibility for the child together, it'd be important for you, your husband and even child, to understand what you are living thru and what high risk all 3 of you are taking in pushing thru and take measures to reduce the risk. Distraction or denial will increase the risk.
 
However in my experience it doesn't matter much what comes from what,
quite true - treat the symptoms - my situation is are they from essential tremor, hashimtos or fibromyalgia - I am off to the neurologist (who thinks it could be ALS) and then the rheumatologist who hopefully will say it fibromyalgia I went to the cardiac specialist 2 weeks ago who said my heart was perfect - well some good news - as to the pain my doctor has me on a trail of prednisolone tables which I must admit have stopped the pain somewhat - now it just feels like some one is holding me by the arms a bit tightly weir feeling !
 
Thank you for all your advice! I really appreciate it. They put me on Naltrexone due to fibro pain and thyroiditis and I do not see benefit to be honest. So I think it will be something I stop taking it’s not worth $50 bucks for 30 days. I am leery of Lyrica due I was on Cymbalta for a year and it stopped working and I did a slow titration off of it and had the worst withdraw symptoms. So I heard lyrics is far worse than Cymbalta, so I avoid. I am doing Savella but just started, so we will see how this goes. I was also told to do a gluten free and dairy free diet for Hashi and suppose to do soy free with PCOS but honestly I feel if your body does not have an issue with it, why wipe it out? I do have gluten sensitivity so I am sticking with that diet at least. Also depression and anxiety are my two worse enemies so I am hoping the Savella may calm that down as well but we will see. My body does not do well on antidepressants medications, I get a lot of issues with them, either get more depressed or switch and get really angry. I’ve already talked with a psychiatrist and do lot think full bipolar but some tendencies. I had tried antipsychotics before, Vrylar was one and that causes bad akinesia so I do not want to go down that road again. Everyone is saying trying holistic approach but I can not afford functional medicine doctors cause most do not take insurance and I am not 100% sure they can help at this point. I feel once autoimmune has set in, your in for life at this point. I have heavy autoimmune issues on both sides of the family, so I know there is genetic, environmental and your own immunity that goes into this. I’ve had a very high stress life at a very young age, which I’m sure where fibro was born. Anyways, thanks again for all your tips and help, it’s very appreciated and I wish you all the best! And hope you can find some relief and normal path as well. 😊
 
Aw poor thing, you got sooo much to do + fibro (and everything that comes with it ) as well!, yes it's challenging , I had pcos, years ago , I had an ovarian drilling to remove them, (I think there was 7 on one side and 5 on the other) I only seem to get one xmall one now and again, (luckily)
I have autoimmune thyroid too (+ bit of osteo) the only thing that helped with this was cutting down on the things (I knew) were annoying it (it was trial and error) I let you know what they were if you like? I used to get low back pain regular (I hated that pain 😡) and the headaches (I get every day, sometimes ALL day) anyway lots of welcome to the forum 🥂 😙💓, you've found a place where there's people who can understand what "this" is like and how challenging it can be 🤗
 
Sure I would like to know they were. I’ll take any help I can get. Just trying to feel good again and I feel likes it’s been over 10 hrs since that. And thanks! People seem very nice on here and I appreciate that, sometimes it seems like no one understands what we go through and just “complaining to much”
 
They don't (unless they get it themselves, they can never fully understand) these things were/are a problem for me, wheat gluten products, sugary drinks, caffeine (I found coke to be worse culprit and coffee) cakes, donuts, biscuits, alchohol, lack of sleep, stressful people, (I've been through long term narcissistic abuse,
not anymore though) , cold weather (I think that's about it) if you find what makes things worse, it makes it easier to cut them down/or out ✨🍀✨
 
Sorry your past history, that is tough to go through I had a friend that went through similar issues in a relationship. Some people are utter scum of the earth. Anyways, gluten for sure and sugar I can tell bugs me, which is hard to quit at times. I am working at it. Cold weather, alcohol, high stress are big ones for me. I guess we just keep plugging along 😊
 
It's ok hun, I've learned a lot about things/people/sheepskin wolves, glad your friend is out, it a physical/emotion and psychic challenge to go through and come out of (I was raised in it first see, narcissistic family cult) left me open to later experiences, it's really good you've already found some culprits that wind it up 👍🏻 that's why I put at the end to cut down or cut out (cos I know those type of thing s are hard to give up)😄
 
with Hashimoto there are millions of cures out there on the internet- hundreds of ways to treat it (of course with high cost supplements) of course there is no cure for hashimoto but a good idea is to beg borrow or steal Brittany Henderson MD and Allison Futterman's book What you must know about Hashimoto's disease - an excellent book that simply explores and explains the different approaches of traditional and complementary medicine when it comes to Hashimoto

There is also a good book on fibromyalgia - Fibromyalgia the complete guide from Medical experts and patients by Sharon Ostalecki PhD a quite detailed book that also looks at mutli disease situations. such as Hashimoto, IBS, ADH
what makes these books good is that they have input from patients
 
So question to everyone: what medication worked best for your Fibro pain? Cymbalta, Lyrica, Savella, or Gabapentin? Also anyone on a combo with antidepressants for depression and anxiety? And found a combo that works?
 
with Hashimoto there are millions of cures out there on the internet- hundreds of ways to treat it (of course with high cost supplements) of course there is no cure for hashimoto but a good idea is to beg borrow or steal Brittany Henderson MD and Allison Futterman's book What you must know about Hashimoto's disease - an excellent book that simply explores and explains the different approaches of traditional and complementary medicine when it comes to Hashimoto

There is also a good book on fibromyalgia - Fibromyalgia the complete guide from Medical experts and patients by Sharon Ostalecki PhD a quite detailed book that also looks at mutli disease situations. such as Hashimoto, IBS, ADH
what makes these books good is that they have input from patients
 
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