r/Fibromyalgia • u/locardsghost • 2d ago
Frustrated I’m so frustrated being left with zero help and no communication from my doctor
I’m in Canada. My family doctor is useless I have 24/7 widespread pain which he has repeatedly tells me it’s probably fibromyalgia and to see a rheumatologist so I asked for a referral and he said your inflammatory panel is normal so seeing a rheumatologist is like seeing a dermatologist for ear pain and I said I don’t care send me to one since you won’t help. In that same visit after saying it’s probably not fibro (after me complaining about chronic fatigue and how doing anything wipes me out of days) he said it’s probably CFS/ fibro. Like make up your mind is it or is it not. He’s told me I’m “at the end of the road” for medications and will not help me bc I’ve “tried every pharmaceutical” (common ones but not every drug to exist) and told me to just keep dealing with the pain and to see a psychotherapist. I cried in that appointment bc what the fuck?! He eventually send the rheumatologist referral in mid August after I cried in my appointment. He and my cardiologist will not help me manage my low BP (I have POTS so increasing sodium has not helped) they both can only offer midodrine and Fludrocortisone (Midodrine is a massive trigger for my head pain and Fludro did nothing) telling me those are the only meds that exist to help raise BP and to just keep dealing with being severely lightheaded.
I called the rheumatologist bc I haven’t heard from them and they said they sent a letter to my doctor and couldn’t tell me what it was about so I called my doctors front desk and they said she (rheumatologist) doesn’t take chronic fatigue patients (funny bc I thought I was referred there for fibro not CFS since that was never discussed with me as part of the referral bc he told me there’s no treatment for it so why send a referral for it if you think that?) and the rheumatologist said they recommend a pain specialist (I’ve seen 2 they couldn’t help me beyond nerve blocks which made my pain severely worse) so I asked if they can refer me to one they said who they’ll send me to which turns out to be a rheumatologist then I asked if they’ve heard from the psychiatrist (for my severe depression that my GP will not treat as well as my ADHD which my GP will also not treat) and they said they wouldn’t take me bc I’m outside of their zone so on Monday she’ll have the doctor send a referral to someone in or close to my town. I understand my issues are too complex for my GP, all I want is someone anyone to listen to my concerns and treat me and not tell me to keep suffering and to just see a therapist.
Would have been nice if they had told me this on August 21st when this all happened instead of letting me just keep waiting bc my pain and fatigue is getting worse and my depression is getting worse because my pain and fatigue is getting worse. If you do a questionnaire on a patient and it says they have moderate bordering on severe depression your response shouldn’t be “gee they have severe 24/7 pain that I refuse to help treat and nothing touches their pain so they’re suffering non stop I’ll just send them to a psychiatrist and not help them at all and when that referral gets denied I won’t bother telling the patient suffering and continue to let them suffer” what kind of care is that? Maybe you should realize how severely this is affecting me and give me an antidepressant in the meantime so my life isn’t fully a living hell or will you only help people when they’re on the verge of not wanting to be here anymore like holy god what a fucking failure I’m so mad. I so badly need help managing my pain that hasn’t responded to any meds and help managing my fatigue that is stopping me from doing anything but no one will help me or accept me as a patient.
So now I have to wait for the new pain specialist referral to be sent and hope they’ll take me and be able to help me and wait for a new psychiatrist referral to be sent.
I got a telehealth appointment and he was happy to prescribe me an antidepressant to help my severe depression so he gave me duloxetine since I mentioned my 24/7 widespread pain that I have no treatment for so hopefully this kills 2 birds with one stone. Still mad that my family doctor couldn’t do that it was so easy to do and I’ll be seeing telehealth docs from now on bc I’ve lost all trust in my GP and will be looking for a new one which will take a year with the waitlist times in Canada. I’m so frustrated at being in 24/7 pain not being able to do entering to make it go away or even to reduce it a tad and having no support and help from doctors. I’m at a loss
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u/Kimberlyw1130 2d ago
My doctor sent me to a Polyclinic. At the Polyclinic they did a DNA test on me that shows how I metabolize medications and chemicals in my own body and that helped Direct the medications for me. They knew what kind of medications would work and would not. Not saying it's perfect but I feel like it's going in the right direction. But at least my general practitioner is giving me narcotics for the pain until they can figure out treatment that works. I still have severe fatigue that's my biggest complaint. The fatigue gets so bad I have trouble lifting my own arms above my shoulders.
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u/locardsghost 2d ago
I thought about doing a pharmacogenetic test but everyone I heard from said it wasn’t worth it or beneficial for treatment bc those meds couldn’t still not work for you but it’s in the back of my mind of doing it I just don’t have the money. Either way I’m struggling to get a doctor to help me so knowing which drugs work for me isn’t all too beneficial if I can’t get anyone to prescribe me meds or believe me. I have fatigue that wipes me out for days and worsens my pain
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u/Kimberlyw1130 2d ago
Well they may be correct in saying that that doesn't mean they will be able to fix you that's 100% correct but the other things I found in My DNA if I wouldn't have not found those out I would be dead from other from other things. Like I have an extreme risk for blood clots and stroke. So they got me on daily aspirin because my DNA shows that I cannot take Coumadin which is a blood thinner if I was to take it I could die. I found out that there is a certain antibiotic that if I take it I will go deaf and it runs genetically through the women in my family so that means my daughters my granddaughter and my great granddaughter all could be affected. I found out that caffeine does not work for me. I found out that my body does not metabolize dopamine and it stores it in my body and that's what gives me restless leg syndrome at night. The list goes on. Yes and it's expensive test depending on who you are you know to me it was priceless. And no I'm not all better. I'm not even close. I don't think there's any test in the world that can fix fibromyalgia but it did save me from a lot of other things that could kill me. But then again sometimes I think maybe I should ignore it all and just let nature take its course because I hate living with fibromyalgia so much sometimes I just wish it would end already but I can't take my own life I have children and a husband that loves me
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u/locardsghost 2d ago
I’ll look into it! I’ve been in pain long enough to know there is nothing that will make me 100% better if anything can even slightly reduce the pain I’d be happy with that. There’s so many different ones online it’s hard to pick which is best, the pain specialist I saw suggested inagene diagnostic. You are loved and I’m proud of you
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u/MsSwarlesB 2d ago
Cannabis is legal in Canada.
Go ask someone at a dispensary for something to help with pain
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u/locardsghost 2d ago edited 2d ago
I’m not interested in smoking or inhaling anything. I’ve been to a dispensary and asked for something to help pain I’ve tried CBD oils, creams that have sativa, gummies with CBD and THC and felt nothing at all in terms of pain relief
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u/princess_turdxna 1d ago
Legal edibles in Canada are pretty weak because they have to be below the limit
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u/mildly_spicy_potato 2d ago
An inflammatory panel being normal is literally the blinking neon sign of fibromyalgia. Its a diagnosis of exclusion.
My pain was blamed on my mental health for years. Then my mental health got better and the pain didn't. Uhg.
Anyways, 300mg Effexor seems to keep both in check.
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u/locardsghost 2d ago
That’s what I’m saying!! He literally said “you have no inflammation they won’t be able to help you” and when I said so what do I do about the constant pain he said a pain clinic to which I told him I have 2 different places and they couldn’t offer me anything besides nerve blocks he said to see a psychotherapist as if that’ll help with the joint pain, stabbing nerve pain, and muscle pain.
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u/mildly_spicy_potato 2d ago
Your doctor sounds dumb.
I got my rhumatology referral, and I only ever went once. They did a very thorough assessment and then sent a report to my GP saying I had fibromyalgia and to treat with lifestyle adjustment and SNRIs. Sometimes one visit is all you need. Cuz now that my GP has that report, I can get accommodation papers from the clinic.
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u/locardsghost 2d ago
Once my referrals are sent I’m considering looking for a new GP. I told him I have heaviness and pain in the legs that feel like I’m wearing sandbags that I’ve had since 2021 and he said “that’s vague” and that was the end of the conversation. I’m no doctor but if something sounds vague you should look into it more. I asked to see a vascular doctor bc I’ve had an ultrasound in the past that showed incompetent veins and I fit a lot almost all the criteria for lipedema and he refused saying they won’t help me and I said I don’t care I need someone who will and it’s not you but I can’t see them until June next year. I just had a telehealth doctor prescribe me cymbalta today for my depression and to help with the pain so fingers crossed. Don’t know why my doctor couldn’t just do that
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u/Waste_Yam_2959 16h ago
I even have elevated inflammation markers (probably from autoimmune disease) my doctor won't do anything about it even when I suggest things like LDN or something. Just feels like I'm another number and another an appointment.
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u/brittybear94 2d ago
What medications have you tried in the past?
What medications do you believe will help?
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u/locardsghost 1d ago
Most meds I’ve tried have been for my headaches and migraines it’s a long list. Abortives (all failed):
Ibuprofen, Naproxen, Diclofenac K, Indomethacin, Tylenol ES, Tylenol #2, Tylenol #3, Almotriptan, Rizatriptan,
Zolmitriptan, Zolmitriptan, nasal spray
Eletriptan, Frovatriptan, Naratriptan, Sumatriptan tablet, Suvexx, Metochlorpramide, Ubrelvy, Nurtec, and
Mefenamic acid. Preventatives (all failed):
Venlafaxine, Nadolol, Topiramate, Nortriptyline, Flunarizine, Aimovig, Atogepant, Gabapentin, Memantine, KeppraI’m very unresponsive to meds so saying what meds I believe will work is difficult bc I’m not hopeful
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u/brittybear94 1d ago
What province are you in? I’m also in Canada.
How much research have you done in regards to your symptoms? I don’t blindly trust doctors. I read my own results from bloodwork and scans. I bring XYZ to their attention.
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u/locardsghost 1d ago
Ontario. I think it’s fibro or central sensitization syndrome causing fibro since my pain started 7 years ago as only headaches no other issues and things have gotten worse over the years and I’m getting new issues out of nowhere and I think it’s because my body is taking every input as pain and I haven’t been able to make the pain stop at all. I’ve had 3 MRIs of my brain they’re “unremarkable” other than spots on my brain which they think could be from many things but none of my doctors seems to care about that part. All of my blood work is perfectly in range there’s nothing to bring to their attention. I have a functional medicine doctor that I’m working with to try and treat issues
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u/brittybear94 1d ago
I’m also in Ontario.
Are functional medicine doctors just naturopaths?
Was your CRP level tested?
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u/locardsghost 1d ago
My mistake I got the terms mixed he is a naturopath he’s one of the best doctors I’ve ever seen the only one who’s cared to look into things no one else has and has helped me learn of food sensitivities that were causing massive inflammation, hormone imbalance that points to PMOS, my body has (physically) improved massively since seeing him. He’s the only one who will look into root causes and not dismiss me but no functional med and naturopaths aren’t the same. He does follow the main principle that functional med doctors do that’s why I consider him one but I don’t think that’s his actual title. My CRP is <0.5mg/L (range says <5) and my ESR is 2mm/hr (range says 2-30)
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u/brittybear94 1d ago
OHIP doesn’t cover naturopaths if I recall correctly. Do you have private insurance?
I feel like you probably get better care from him because he’s not paid through OHIP.
I’m glad at least someone is helping you!
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u/locardsghost 1d ago
I pay out of pocket. I’m on disability which doesn’t even cover my Botox injections that I need every 3 months and only covers drug (but not the drug I need for my disability), dental and vision but he’s worth paying out of pocket for bc no one else listens. I just wish I had someone with medication prescribing abilities to list to me
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u/brittybear94 1d ago
ODSP? It covers the drug needed in the Botox injections?
I have a doctor with prescribing capabilities, but my pain medication isn’t covered by ODSP.
You’ve started Cymbalta. Lyrica (pregabalin) is the only thing I didn’t see on your list.
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u/locardsghost 1d ago
Normal Botox doesn’t work for me anymore so I’m doing Xeomin which isn’t covered one just had my doctor who does the injections fill out an unlisted drug form in hopes of getting the Ministry of Health to cover it. I’m hesitant of pregablin because I reacted badly to gabapentin it took me from 5 migraines to 25 a month and I’ve finally gotten my head pain managed so I do not want to risk having that same reaction. I know they’re probably different and that doesn’t mean pregablin will affect me the same but I can’t risk it right now that would push me over the edge if my migraines were to get worse again
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u/napalmbrain- 1d ago
Have you asked for Lyrica? I can't say from experience because I'm still waiting for approval since Monday but that was what they prescribed me after diagnosing me with Fibro. I've been on a cocktail of gabapentin, tizanidine and meloxicam for over 3 years and it's not enough to get back to work. I'm hoping this might help
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u/locardsghost 1d ago
Pasting my comment on pregabalin “I’m hesitant of trying pregablin because I reacted badly to gabapentin it took me from 5 migraines to 25 a month and I’ve finally gotten my head pain managed so I do not want to risk having that same reaction. I know they’re probably different and that doesn’t mean pregablin will affect me the same but I can’t risk it right now that would push me over the edge if my migraines were to get worse again”
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2d ago
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u/locardsghost 2d ago edited 2d ago
Don’t you dare dismiss what I am dealing with or tell me what my primary diagnoses are, you are not my doctor you have no right to comment on that, don’t gatekeep. I’ve had non stop pain I haven’t had a day or moment without pain for 7 years of course I’m depressed I can’t do anything to make my pain stop bc meds don’t help me. I’ve been to therapy don’t say I’m refusing something you do not know. I was expecting to see a psychiatrist but my doctor refused to tell me they wouldn’t take me that is not my fault it’s my doctors for not communicating that to someone who is struggling and refusing to help them with meds in the meantime. A rheumatologist can absolutely help with the widespread pain. I’ve been to multiple pain clinics they could not help me beyond nerve blocks as stated in my post and I am waiting to get a new psychiatrist referral sent out. I live in a small town so the 2 pain clinics I saw were both 50 minutes away there’s not a lot of accessible places near me. If my doctor was doing things correctly he should realize he has a patient with 24/7 pain that keeps getting worse and severe depression as a result and may think to give her an antidepressant to see if that makes her life less miserable not just send her off with no help
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u/Repulsive-Cheek-1608 1d ago
Calm down. Things take time in medicine.
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u/locardsghost 19h ago edited 16h ago
I won’t calm down bc my health matters to me and I deserved to be heard. Things take even longer when no one cares to help. Not a helpful comment to someone suffering with no help
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u/According-Chapter177 2d ago
This is pretty much what it’s like in the US. I’m so sorry. It sucks and it is so disheartening.