Living With Fibromyalgia and/or Possible CFS

[Chri]

Anyone else on here? Any tips or advice? I've read pretty much everything I can from Googling, but not much seems to help ever.

I'm at work right now after getting a full 8 hours of rest and feel like I haven't slept in weeks. It feels like I'm in a drunken stupor; stumbling, uncoordinated, etc. Gabapentin seems to be helping with the severe allodynia, but this fatigue is killing me, it's really starting to interfere with my ability to work which is worrying as I'm the "bread winner" between my partner and myself.

I don't know. Any insight would be greatly appreciated. My doctors are trying to help, but I'm getting desperate

 

[MFB]

Oof, I had a bout with CFS earlier this year (or maybe it was the end of last year, can't recall) and it was fucking awful, like, threw my whole shit into whack and I don't even know how it broke; just one day it seemed like I woke up and my body was back to normal. I definitely wasn't getting proper sleep during it, it was either way too much or too little and I wasn't able to go to the gym either since everything just felt heavy which meant my movements were sluggish.

 

[Chri]

Oof, I had a bout with CFS earlier this year (or maybe it was the end of last year, can't recall) and it was fucking awful, like, threw my whole shit into whack and I don't even know how it broke; just one day it seemed like I woke up and my body was back to normal. I definitely wasn't getting proper sleep during it, it was either way too much or too little and I wasn't able to go to the gym either since everything just felt heavy which meant my movements were sluggish.

I feel you on that. I'm in the worst shape I've been in my entire life, and I'm struggling to do anything about it. I can't find a balance. I'll feel fine for a few days and think to myself, "okay I can finally start working out again. I'll just start slow and easy and be mindful." Then the next day I feel "sick" and groggy like I do now. Then I'm also getting slammed at work having to lift and move stuff constantly while running around all day and trying to keep up with college students' chemistry labs.

 

[USMarine75]

Anyone else on here? Any tips or advice? I've read pretty much everything I can from Googling, but not much seems to help ever.

I'm at work right now after getting a full 8 hours of rest and feel like I haven't slept in weeks. It feels like I'm in a drunken stupor; stumbling, uncoordinated, etc. Gabapentin seems to be helping with the severe allodynia, but this fatigue is killing me, it's really starting to interfere with my ability to work which is worrying as I'm the "bread winner" between my partner and myself.

I don't know. Any insight would be greatly appreciated. My doctors are trying to help, but I'm getting desperate

Which is more notable the pain or the fatigue? That can sometimes give you an idea as to what the cause might be (based on.you mentioning fibromyalgia and CFS).

 

[Chri]

Which is more notable the pain or the fatigue? That can sometimes give you an idea as to what the cause might be (based on.you mentioning fibromyalgia and CFS).

The pain sometimes drives me nuts, but I’m used to being in pain 24/7. I can deal with that. My biggest issue is feeling like I’m drunk (for lack of a better way to explain it) for days at a time.

My doctors are working under the notion that I’m not getting adequate sleep because my neuralgia is constantly firing off signals even when I’m sleeping. I’ve tried muscle relaxers, I’m on Duloxetine and gabapentin now and so far nothing is helping the fatigue all too much. It’s much more tolerable than it was prior to the gabapentin, so maybe that will be a key factor? I’m still on a lower dose because my PCP wanted me to slowly introduce it since I need to take it three times a day.

 

[ArtDecade]

Wishing you all the best, mate. Its not always the best to reach out to the Internet when looking into health, but @USMarine75 actually knows how the body works.

 

[Chri]

Wishing you all the best, mate. Its not always the best to reach out to the Internet when looking into health, but @USMarine75 actually knows how the body works.

Thank you, and that’s definitely sound advice in and of itself. I’m not going to blindly jump on any suggestions, don’t worry.

 

[USMarine75]

The pain sometimes drives me nuts, but I’m used to being in pain 24/7. I can deal with that. My biggest issue is feeling like I’m drunk (for lack of a better way to explain it) for days at a time.

My doctors are working under the notion that I’m not getting adequate sleep because my neuralgia is constantly firing off signals even when I’m sleeping. I’ve tried muscle relaxers, I’m on Duloxetine and gabapentin now and so far nothing is helping the fatigue all too much. It’s much more tolerable than it was prior to the gabapentin, so maybe that will be a key factor? I’m still on a lower dose because my PCP wanted me to slowly introduce it since I need to take it three times a day.

Obv can’t diagnose anything over the internet (unless you’re looking to get viagra lol). But the needle is def pointing in the fibromyalgia direction. Often times stuff like this you go with your best guess (based on what lab tests and evidence depict) and treat for that. If it works then we confirmed what we thought, otherwise we start checking off the remaining differential diagnoses.

Quick Q… (feel free to DM if you don’t want to post here)

-Is the pain all over or confined to joints and appendages?

-Any IBS symptoms (bloating, constipation or diarrhea, abdominal pain)?

-Alzheimer’s symptoms (loss of memory or concentration? Confusion?)?

-any hypersensitivity to things like light or smells?

 

[Chri]

Obv can’t diagnose anything over the internet (unless you’re looking to get viagra lol). But the needle is def pointing in the fibromyalgia direction. Often times stuff like this you go with your best guess (based on what lab tests and evidence depict) and treat for that. If it works then we confirmed what we thought, otherwise we start checking off the remaining differential diagnoses.

Quick Q… (feel free to DM if you don’t want to post here)

-Is the pain all over or confined to joints and appendages?

-Any IBS symptoms (bloating, constipation or diarrhea, abdominal pain)?

-Alzheimer’s symptoms (loss of memory or concentration? Confusion?)?

-any hypersensitivity to things like light or smells?

I've no qualms posting any of this publicly. I wouldn't mind having this be a mega-thread for other forum users to post their experiences, too.

The FMS we're about 99% sure of. My sister has a positive diagnosis as well.

- I have widespread joint pain, though that's been a constant my entire life. I may have Marfan or Ehlers Danlos, but seeing a geneticist is a pain in the ass. Hyper mobile and painful joints, along with hyper elasticity across the skin.
The neuralgia pain has just started being noticeable over the last two years or so. It started around my waist and hips, but I initially wrote it off thinking that I may have leaned up on a lab bench where students could have spilled something corrosive. Now, the most active pain spots are my hips/waist, lower back, upper back around the shoulders, lower leg closest to my ankles, and then my scalp. Wearing clothes, and light touches are the most troubling triggers, though a breeze or standing near a fan also cause the pain.

-Possible IBS, though I wouldn't say it's chronic.

-I wouldn't say Alzheimer's level symptoms, but when I'm going through these bouts of "fog" I definitely have trouble concentrating. It also feels like it takes a second or two for my vision to catch up with me when turning or moving my head. I also struggle to find words at times, or speak at the same rate that I'm used to.

-Some photosensitivity, but again not chronic, and no new intolerance to smells. COVID really did a number on my sense of smell anyway.

 

[JimF]

I'm going to be paying close attention to this thread as I'm currently suffering exhaustion and going down a couple of medical avenues to resolve it. Currently 50:50 sleep apnoea and suspected fatty liver issues.

 

[USMarine75]

I've no qualms posting any of this publicly. I wouldn't mind having this be a mega-thread for other forum users to post their experiences, too.

The FMS we're about 99% sure of. My sister has a positive diagnosis as well.

- I have widespread joint pain, though that's been a constant my entire life. I may have Marfan or Ehlers Danlos, but seeing a geneticist is a pain in the ass. Hyper mobile and painful joints, along with hyper elasticity across the skin.
The neuralgia pain has just started being noticeable over the last two years or so. It started around my waist and hips, but I initially wrote it off thinking that I may have leaned up on a lab bench where students could have spilled something corrosive. Now, the most active pain spots are my hips/waist, lower back, upper back around the shoulders, lower leg closest to my ankles, and then my scalp. Wearing clothes, and light touches are the most troubling triggers, though a breeze or standing near a fan also cause the pain.

-Possible IBS, though I wouldn't say it's chronic.

-I wouldn't say Alzheimer's level symptoms, but when I'm going through these bouts of "fog" I definitely have trouble concentrating. It also feels like it takes a second or two for my vision to catch up with me when turning or moving my head. I also struggle to find words at times, or speak at the same rate that I'm used to.

-Some photosensitivity, but again not chronic, and no new intolerance to smells. COVID really did a number on my sense of smell anyway.

I know the bursae (fluid filled sacks) in your hips can get inflamed and become painful with FMS. Obviously can’t diagnose on a forum but it sure sounds like the right diagnosis. Definitely see a geneticist to rule out anything else.

Did your doctor prescribe the standard cocktail of pregabalin, milnaciprin, and duloxetine? Because if they work then you’re definitely in the ballpark. I can personally speak for pregabalin I had some referred shooting nerve pain after a surgery and it worked like magic!

Hope you get this figured out and get back towards a healthy and happy baseline.

 

[Chri]

I know the bursae (fluid filled sacks) in your hips can get inflamed and become painful with FMS. Obviously can’t diagnose on a forum but it sure sounds like the right diagnosis. Definitely see a geneticist to rule out anything else.

Did your doctor prescribe the standard cocktail of pregabalin, milnaciprin, and duloxetine? Because if they work then you’re definitely in the ballpark. I can personally speak for pregabalin I had some referred shooting nerve pain after a surgery and it worked like magic!

Hope you get this figured out and get back towards a healthy and happy baseline.

I’m due back to see both my rheumatologist and PCP within the next two months, and then we were going on to track down a geneticist.

According to my PCP pregabalin is a controlled substance and would be a little more difficult to prescribe, so he wanted to start with gabapentin first before going that route. So, right now I’m on 60mg Duloxetine, and working towards three doses of 300mg Gabapentin each day (I’m currently at 300 in the morning and evening, and 200 in the afternoon for a few more days.)

As for my hip pain, I don’t think it’s anything deeper than neuralgia causing allodynia. It’s not constant, and only acts up during flare ups.

Thank you so much for chiming in thus far!

 

[jaxadam]

Obv can’t diagnose anything over the internet (unless you’re looking to get viagra lol).

Sign me up! I just need enough so I don’t roll out of bed in the morning!

 

[Chri]

Random update:

Had brain MRI done before going down the neurology route. My father and his sister both had MS hence the desire to get this checked. As of right now at least, there are no lesions or scarring present, but we haven't checked my spine.

Rheumatologist appointment is next week, so we'll see what she has to say and wants to get done.

Went back down to 30mg Duloxetine to reduce feverish sweating/overheating, and am now up to 1.2g Gabapentin (400mg 3x/day). Still struggling maybe half of each week, but it's becoming tolerable.

Pro-tip for anyone with neuralgia pain, get a TENS unit. It doesn't do anything for the long term, but that's the only thing that's helped me through massive flare ups/episodes. The only downside is that I can't really use it while I'm at work since being hooked up to electrodes isn't the most conducive to moving around

 

[crimson]

Random update:

Had brain MRI done before going down the neurology route. My father and his sister both had MS hence the desire to get this checked. As of right now at least, there are no lesions or scarring present, but we haven't checked my spine.

Rheumatologist appointment is next week, so we'll see what she has to say and wants to get done.

Went back down to 30mg Duloxetine to reduce feverish sweating/overheating, and am now up to 1.2g Gabapentin (400mg 3x/day). Still struggling maybe half of each week, but it's becoming tolerable.

Pro-tip for anyone with neuralgia pain, get a TENS unit. It doesn't do anything for the long term, but that's the only thing that's helped me through massive flare ups/episodes. The only downside is that I can't really use it while I'm at work since being hooked up to electrodes isn't the most conducive to moving around

Sorry to hear and my gut recommendation was to get MRIs of different regions as it tends to be the least intrusive and also has high visibility. (Also no risk of radiation poisoning, etc)

Let us know how the rheumatologist appointment goes.

Generally speaking, I've had to be my own doctor even after going to the doctors. I would take everything they say with a grain of salt and then draw correlation/associations with other symptoms.

I happen to ask myself, "Is this the cause or the symptom or is this the cause of the symptom?" I definitely go crazy doing so, but I think I've actually helped myself a lot during my own experience.

You have to make the assumption and conclusions the doctors sometimes can't because they can't really give you a diagnosis out of all your symptoms, even if you have minor concerns to it. What I've learned are that diagnosis are about 60-80% accurate, but the rest you really have to do your own research. That will also prevent you from taking unnecessary drugs etc.

I don't want to get into my personal experience too much, but I will say the most common diagnosis I've gotten is anxiety, and this urgent care doctor actually prescribed my zoloft. He didn't understand my anxiety was coming out of the fear of incompetent doctors like himself. I went in literally to get a re-test for my triglycerides level, and he gave me fucking zoloft like candy. Naturally, I just ignored the diagnosis. I admit I have anxiety, but my anxiety is generally due to the official diagnosis of someone who's in a role of authority who isn't willing to listen or inquisitive of their clients.

TLDR

I watched too much House M.D., but you should still take any diagnosis with several grains of salt and do research for correlation. Take your lab results and make those your foundations for research. Lab results, generally, don't lie unless there's a false positive or a factor that compromises the integrity of the test, for example, not fasting before a blood test.

This probably won't give you much comfort, but at the minimum, I hope you can be diligent in your own health.

Honestly, just the fibromyalgia disease used to be considered inflammatory or immune response, and has now shifted to a nervous system disease. That alone, should tell you, we are just starting to understand certain illnesses that have been around.

Fibromyalgia

Information for patients on fibromyalgia: what it is, getting diagnosed, treatment options, and tips for living with the condition.

rheumatology.org

Understanding Fibromyalgia and Its Related Disorders

www.ncbi.nlm.nih.gov

 

[Chri]

So, long overdue update for anyone in the same position;

Rheumatologist appointment was pretty pointless. I'm not sure that she's the best in dealing with my situation, and is probably more versed in dealing with arthritis patients and things along those lines. Though, while at that appointment I noticed my heart rate was pretty high considering I hadn't done anything strenuous that day (106 if I remember correctly). It was roughly the same at my last primary care visit, so that was a bit concerning and led me to think that this may have something to do the dizziness I'm experiencing.

I went down the rabbit hole of trying to figure out some conditions that encompass those symptoms. We ran a tilt table test to check for POTS, but weren't able to replicate anything. Fortunately/unfortunately I don't have these symptoms every day, but of course the next day after the test my heart rate is all over the place when I'm getting up vs. sitting/laying down.

Newer symptom that's becoming more and more prevalent is that my feet start to feel like they are literally on fire when I'm laying down. Obviously a neuropathy related pain, but none of my current medications are helpful with this. I've had tons of bloodwork done at this point, so I doubt its diabetes related peripheral neuropathy. The more I've looked into it, the more likely it seems it could be an MS thing. Some FMS people complain of this, but it doesn't seem to be the same as what I'm experiencing based on what others have said.

I'm looking to finally schedule with a neurologist next week sometime, so I'll see what he thinks then.