18 years of pain, recently diagnosed.

[TinyBec]

Hello all, my name is Becky and I want to start by apologizing because this may be a lengthy post!

I am currently 35 and have been dealing with random pain/medical issues for the last 18 years. It all started with some headaches and tooth pain (my parents never really took me to doctors or dentists as a child). I passively got told by the dentist at that time that I had TMJ, but not that I should do anything about it and young me didn't know any better. Fast forward a few years, I start getting severe headaches every day and this lasted for 3 years SOLID before I had any sign of relief (I ended up getting my wisdom teeth out). The multiple neurologists that I saw basically shrugged their shoulders and said that I had migraines but they didn't know why I was in pain, they put me on muscle relaxers and multiple different migraine medications over the years.
I have had various symptoms over the years, but was always just shrugged off by the doctors as "there's nothing wrong with you" or "Here are some pain meds, go away" well at least that is how it felt.....I am sure you all know the feeling?
So, all this is to say that basically up until now, I haven't had a doctor care enough to take me seriously and/or actually look at all of my symptoms together and help me try to figure it out.
My current doctor has stated that I in fact DO NOT have migraines, the severe headaches are caused by the stress and tension in my face/neck from the TMD & grinding my teeth at night. She has referred me to physical therapy to help deal with my jaw and diagnosed me with Fibromyalgia and potentially CFS (we are still looking into this as I haven't completed my sleep study). I just started medication for fibro on December 23rd, 2020.

I'd like to make a list of medications I have been on (with info on why), diagnoses, and also the symptoms I have had (again sorry this is long!)

Medications:
Nortriptyline- Migraine prevention
Amitriptyline- Migraine prevention
Maxalt- Migraine treatment
Tizanidine- Migraine prevention/chronic tightness in back & neck
Cyclobenzaprine- Migraine prevention/chronic tightness in back & neck
Sumatriptan- Migraine treatment
Fioricet- Migraine treatment
Wellbutrin XL- Anxiety
Zoloft- Anxiety
Cymbalta- Fibromyalgia/Anxiety
Nexplanon- Birth control
Lipitor- High Cholesterol

Symptoms:
Daily aches and pains getting out of bed
Back and neck tightness (pop several times a day).
Shoulders sore
Vertigo intermittenly
Cold hands & feet (feet go numb regardless of temperature).
Brain fog
Extreme fatigue (caffeine seems to make me more tired).
I sleep 10 hours at night and generally take a 2-hour nap during the day.
Temperature regulation issues- I can not go from a cold to a hot environment or vise versa without feeling like I am having a hot flash.
Symptoms of Hypoglycemia (blood glucose levels are normal during episodes)- Very hot, sweaty, shaky, irritable, light-headed, can't process questions or think straight.
Tight clothing is very bothersome, especially bra bands (I only can wear stretchy sleep/sports bras).
Tingles up legs & in feet if I am standing barefoot on a hard surface.
Globus sensation in throat (This was happening for 2 years, during which I had multiple tests and exams before my doctor suspected it might be anxiety-related, medication has helped with it but it still occurs at times).
Chronic constipation


Diagnosed issues:
Chronic Headaches
Vertigo
TMJ/TMD
Diverticuli
Reynaud's syndrome
High Cholesterol (Hereditary)
Hiatal Hernia
Umbilical Hernia
Carpal tunnel (L&R)
De Quervain's tenosynovitis (L&R)
Trigger thumb (L&R)
Parasomnia (Sleepwalking, talking, night terrors, and sleep paralysis)
Cystic Thyroid nodule (thyroid tests are always normal, nodules not big enough to cause issues)
Esophageal dysmotility
Globus sensation
Spasm of thoracic back muscle
Muscle spasms of neck
Thoracic spine pain
Hyperhydrosis
Fibromyalgia


If you have made it this far, thank you! I am just trying to get everything all in one place to determine how to proceed with my medical care and fix as many issues as possible.

I was previously on Zoloft 75mg and that worked well for my anxiety. In December when I was diagnosed my doctor suggested we could start gabapentin in combination with the Zoloft or start the Cymbalta and we eventually decided on the Cymbalta.
Since January 31st I have been experiencing side effects, which we believe are from the Cymbalta (hot flushing cheeks each afternoon followed by an excruciatingly painful headache) we have decided to potentially switch to something else.
The main choice is to switch back to Zoloft and add a pain/anti-seizure medication like Gabapentin or Lyrica, but I am concerned about the potential side effects.
Can someone tell me if they have had anything similar and what they did? Or maybe if there is another medication that maybe we haven't thought of?

I just know that I am not alone in feeling like this, but it is exhausting and emotionally draining...I feel like I am a bad mom because I am always in pain & can't properly care for my 1-year-old. My husband always has to take over, I am feeling a lot of guilt after these past 32 days of torture.

Thank you so much for reading!
Becky

 

[sunkacola]

I am sorry you are having so much trouble. I note that you are taking an awful lot of medication. Sometimes the medications themselves add to or exacerbate the symptoms of FM. Most of them have side effects and you don't know, when you are taking so many, whether this one or that one is causing you problems.
If it is possible, stop at least some of them with doctor supervision. For instance, only taking one medication for migraine instead of three, or one for anxiety instead of two. Cymbalta often has bad side effects for people. there are a lot of other things you can do to help yourself that are not dependent on medication. Read the post that is pinned at the top of the General forum and see if something there starts to help you.

I also hear that Functional Medicine doctors are good at figuring things out and cutting down on medications. If you can find one in your area, that would be worthwhile for you.

 

[TinyBec]

Oh I'm sorry the medication section was probably confusing! This was a list of all medication I've tried over the years... currently I am only taking Cymbalta, Tizanidine, and Lipitor daily and Fioricet when needed for headaches.

 

[sunkacola]

Oh, OK. So now what I say is this: you are taking medication, Cymbalta, that gives you bad side effects, and doesn't seem to be helping with the pain. So it would be wise in my opinion to stop that medication. Gabapentin did me no good at all but everyone is different. Lipitor often causes muscle pain and fatigue so I wonder if there's something else you can try for the cholesterol issue. And start trying the other non-medicine things that can help you and see how that goes.

 

[Creola17]

I agree with sunkacola to try and find supplements and other natural ways to help you. Also try a healthy diet.

 

[srdodla123]

I second @sunkacola here. Lipitor and many cholesterol lowering drugs seem to have muscle aches as a common side effect for people who do not have fibromyalgia and if we are sensitive like us, this may exacerbate symptoms of pain

 

[TinyBec]

I only started the Lipitor 6 weeks ago, and the anxiety meds I started in February 2019. I've been on a few different ones, none of them seem to make my symptoms any worse than they have always been.

 

[srdodla123]

I only started the Lipitor 6 weeks ago, and the anxiety meds I started in February 2019. I've been on a few different ones, none of them seem to make my symptoms any worse than they have always been.

Ok looks like you tried pretty much everything that is suitable for fibromyalgia except may be gabapentin/ pregabalin.
Anyway I am not a doctor. I think you should start trying the advice @sunkacola put up.

 

[srdodla123]

Ok looks like you tried pretty much everything that is suitable for fibromyalgia except may be gabapentin/ pregabalin.
Anyway I am not a doctor. I think you should start trying the advice @sunkacola put up.

 

[Flexecif]

I second @sunkacola here. Lipitor and many cholesterol lowering drugs seem to have muscle aches as a common side effect for people who do not have fibromyalgia and if we are sensitive like us, this may exacerbate symptoms of pain

I agree and I have experienced muscle aches with Lipitor and other cholesterol-lowering drugs.

 

[TinyBec]

Ok looks like you tried pretty much everything that is suitable for fibromyalgia except may be gabapentin/ pregabalin.
Anyway I am not a doctor. I think you should start trying the advice @sunkacola put up.

I am actually going to be starting Gabapentin or Lyrica soon, my doctor wanted to make sure my new meds were okay before starting that as well....I switched back to Zoloft instead of Cymbalta because of side effects it's been a long road of trial and error

 

[srdodla123]

I am actually going to be starting Gabapentin or Lyrica soon, my doctor wanted to make sure my new meds were okay before starting that as well....I switched back to Zoloft instead of Cymbalta because of side effects it's been a long road of trial and error

All the best

 

[Creola17]

I'll never understand why you all take so many chemicals. They cause more problems. If you use vitamins, supplements and natural remedies you'll get relief without side effects and other problems. Diet is very important as to how you feel. I realize some medicine is helpful but look at long term.
Just research before you pop that pill. I'm taking a thyroid pill but would welcome another way so I'm researching.
I was taking alot of pain and spasm medicines and still hurt. Once I weaned off of them and used sprays and lotions and pot I feel alot better. Maybe some of you could try it.

 

[Peachy]

Less is more for me too. Not to say it’s easy and without pain living in this body but I had such adverse and paradoxical reactions to pharmaceuticals that I’ve learned my body really can’t handle them.

 

[srdodla123]

Less is more for me too. Not to say it’s easy and without pain living in this body but I had such adverse and paradoxical reactions to pharmaceuticals that I’ve learned my body really can’t handle them.

Cant agree more with @Peachy and @Creola17