Frustrated Fibro Girl

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Hi everyone…I am new to this site and new to fibromyalgia. I have been coping with its wrath for the past year, but was only diagnosed a month ago, because they thought it might be lupus. My symptoms include pain especially my lower back, hips, legs, shoulders, arms, and peripheral neuropothy, especially in my feet. Rheumotologist confirmed it was not lupus. I have also had gout twice this year, diverticulitis twice this year, I have hypothyroidism, sleep apnea, HBP, high cholestoral, migraines, chronic sinusitis, and I feel like I am just falling apart at such a young age. I had my first followup yesterday and I am feeling frustrated. I guess I needed to vent and hear that I am not alone. Here is my frustration about my followup:

At diagnosing me, they offered me Cymbalta 30 mg. Take one at bedtime, you wont have any side effects they said. I have been having all over body pain, anxiety, periods of weight gain (possibly connected with depression and terrible sleep), and terrible mood swings. My symptoms started about a year ago when I underwent an extremely stressful situation when I had to go against family members and make an independant decision to get authorities involved in rescuing an elderly family member who was sure to die soon in a hoarding situation. I have been her part time caretaker ever since while also juggling my own fulltime employment and family. My son is an adult (22) but still lives at home. So, you can get a feel for the stressful event that triggered my FM. My mom was also diagnosed in her late 30s (I am 47).

Cymbalta gave me 24/7 nausea and chills and teeth chattering on day one. I took a second dose, and had the same on day two, so I called the doctor as I was instructed and they told me I had to stop it. I had three days of my body feeling like pain left it, even tho I was freezing and sick to my stomach. But, I followed orders and stopped it. I went for my followup yesterday and they offered me yet another pill called Gabapentin. After reading some online reviews I am scared to even try it.

There are a couple reasons I am feeling frustrated. One is that the doctor’s assistant told me I just needed to get better sleep and start exercising and fibromyalgia will go away, I will get rid of it. This is not my understanding of it…while I do understand that exercise and sleep is supposed to help, the pain prevents me from being motivated to exercise and my sleep is crappy because no matter how I try, I never sleep more than 5 or 6 hours a night. Both he and the doctor told me I need to get 8 hours a night! I cannot even tell you the last time I slept 8 hours. Seriously! and I was not under the impression that fibromyalgia can just go away. I felt so dismissed by this, I decided I am not going back to that doctor. I felt like here is some overweight girl who is bringing her problems on herself, so I will never go back. I decided I will talk to my family doctor and see what he has to say.

I ordered a yoga mat, and I plan to try some beginner yoga, even though I am sure it is going to hurt, I am going to try. I am also looking into joining the YMCA to take advantage of the senior water exercise class and maybe the sauna /hot tub. I am determined not to be a Guinea pig where they just keep offering me different medications that I have never even heard of. I want relief, but not at the expense of putting more drugs in my system. I was so hopeful about cymbalta, it was going to address everything, but it made me sick. I am seriously so sad and frustrated, but I am trying to turn this into determination. I just wish I had the energy and motivation to push, but to be honest I feel drained all the time and feel like I can barely do anything. Even after making a meal for my family or bringing supplies to my aunt in assisted living, I feel like I ran a marathon. I’m so frustrated and just feel so defeated.

Thank you for listening. I just need someone to read this that can truly understand.

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Hi,
I totally get it. Have you read The Spoon Theory yet? It really seems to explain what we go through (and can help other people understand us also).
I have Sjogren’s Syndrome and developed Fibro on top of it. Some days I am amazed with how much trouble it gives me. You did mention yoga. If it helps you any, I do yoga and it really makes a difference. It is something you have to let your muscles get used to but boy can it help. I really hope it does the same for you.
FYI, I am on gapapentin for both the Fibro and neuropathy from my SS. It really helps. It kills me that people will misuse anything and they have made it very hard for the rest of us that need this stuff.
This is a great place to vent. We all get it without having to have it explained… sending gentle hugs.

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Oh you do take it? I was afraid to take it…it just seems like I am just trying so many drugs, and the doc also said to “keep in mind this doesnt treat fibromyalgia, you have to do that with exercise and sleep.” I just feel so defeated, I guess that is the only fitting word. So I thought why even bother, why not just try some natural methods and see what happens…because meanwhile I have been suffering with it on and off for a year now and have rather gotten used to it. Its refreshing to know that even though I feel crappy, I am more lucky than lupus positive people who have to worry about that really doing damage to their body. At least as far as anything I have read or what they know up until this point, fibromyalgia can hurt, but it cannot actually hurt me. I am giving yoga a try…I am hopeful it may help. And losing some weight along the way could be an added bonus :slight_smile:

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In the past I was on a high dose (600mgs, 3 times a day) when they were trying to get the neuropathy under control. Weened off after about a year and stayed off it for a good year and a half, 2 years. With the Fibro they out me back on to ease the overall pain. (30pmgs, 3 times a day). It helps me noticeably. It doesn’t stop flairs or bad days but I function better overall.
I also use CBD oil every day and that helps too.
With the autoimmune I should watch my diet better than I do. My husband is big on snack foods so my own fault for giving in. Lol. But overall decent diet.
Yoga and the like keep my joints loose and relaxes the tension in the muscles. Other than that, its figuring out what works for you. Try to remember that it can ebb and flow. Bad times don’t last forever.

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Okay that was another thing I thought about was CBD. I hope it will give me a break soon…seems to be daily with no breaks. I will check out the book you mentioned. I am mainly struggling with getting my mind right…I have been tending to feel angry and sorry for myself and I am working on changing that now. My husband is wonderful which is a big help, but even with his willingness and compassion, it is still hard for him to understand. I cannot believe how easily I am exhausted when trying to do simple things I did with no problem before. Its frustrating for me, because I have always been the strong one. BUT I am trying to focus on how lucky I am to have a strong support and how extremely lucky I am not to have had lupus. Alot of people have it much worse, so I am trying to have a better outlook. I dont know why it’s so hard. The neuropothy sucks the most, I think that’s why he offered this drug, but I am going to try coping without it. I got my yoga mat today and took some personal days from work to get in the game and try to get started without worrying about work for a few days. I appreciate you sharing your tips and info with me…this is exactly what I need and why I searched for a support group. Even with my mom having fibromyalgia, I never really understood it…and we have a somewhat complicated relationship. It’s not a very close one…and I need to hear from others with some insight on dealing with this and adjusting to it. So thank you. I hope to hear more and gain some help through reading through other people’s experiences. Hope you are doing well.

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Hi Starr1,
I also take gabapentin and have been on it four years now. It doesn’t treat fibromyalgia specifically but it really help with the neuropathy and the burning skin pain. There isn’t any one magic bullet for fibro so you have to look at it like, well this thing helps 10%, this other thing helps another 10% and so on. What works for some people will also not work for others so quite a lot you get other fibro sufferers saying “try this, it helps me” but does nothing for you or makes you feel worse. For instance, CBD oil makes me feel sick and dizzy and give me heart palpitations and offers no pain relief at all.
I was very recently on tramadol which worked on the the arthritis in my hips and knees (I sound old but only 40) but this did nothing for the fibro muscle pains, fatigue and mental fog. Again, another 10%. Had to give up though as my liver started to malfunction after 3 years on it so lost another 10% help there. This is turn makes exercise hurt more so can’t do my yoga or cycling much which takes another 10% away (yes exercise did help as long as I kept to limits).
It’s much of a balancing act I’m afraid and if you relate to spoon theory EnjoyLife mentioned then sometimes you wake up with more spoons on one day and on other start with less than you expected. At the moment, I feel like someone has been stealing my spoons!
I too have had problems with doctors over the years. Mostly ones who “reassure” me that I don’t have a “real” illness and to either take anti anxiety medication ( the old hysterical woman diagnosis) or do more exercise than I’m already struggling with. Luckily now found one doctor who listens to me and sent me to a pain clinic. If possible, please try and get a referral to a pain clinic! The doctors there understand fibro and offer a lot of different coping strategies a well as try to figure out medication to suit you.

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Hi Starr1
I am so glad you felt you can vent how you feel on this forum. I have secondary Raynauds looks like scleroderma from a nailfold capillaroscopy test I had at Mayo. I also had 3 1/2 Parathyroids removed which before that was solved caused osteoporosis. I have vestibular migraines and vertigo that seem to not go away now so I will be having an MRI and MRA of my brain on Monday to see if it is vascular since they saw a vascular loop on my cranial nerve in a previous MRI for something else. They thought i had trigeminal neuralgia due to facial pain and numbness. So we will see what that shows. I have had a cervical fusion, knee surgery, bowel obstruction gastroparesis, appendectomy just to mention a few. I also too Cymbalta which caused severe 24/7 nausea which I thought was from Vertigo. Stopped Cymbalta and nausea went away. I have been taking Wellbutrin for several years and that is suppose to help with pain of Fibro and depression think it helps a little with depression.
What made me feel better is when you said you have an adult son living in your basement! It actually made me chuckle because I have that same situation which is also stressful but at least I know I am not alone! Plus he is addicted to ordering from Amazon! My 2 other kids 23 and 30 tell me don’t be stressed your going to die!!! Well easier daid than done! What I am trying now which was suggested after spending 2 weeks at Mayo was Cognitive Behavior Therapy or CBT. It does help at times. Look into that if you can. Also I cant do Yoga anymore due to Vertigo so I have been doing modified Pilates. (Standing more) Building core, strength and balance. Also as of January 2nd I am trying not to eat sugar. I am on day 2 lol… :joy: So glad you joined and welcome I feel your frustration!!!
Hippiemon

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hippiemom,

Your vertigo might be caused by your fibro. Mine is. My ENT did a ton of tests–some of which I’ll NEVER do again–to try to find out why I had vertigo. When I FINALLY had my first meeting with him, after all those tests (I was referred by my GP), the first thing he told me was that I had fibromyalgia. It had finally gotten to the point of invading the nerve endings in my inner ear and THAT’S what was causing my vertigo. Sucks MAJORLY !!! I can no longer use my headphones for any length of time to listen to my music. (And hubby & I do not exactly have the same taste in music, if ya know what I mean.) Also, when the time would come that I would really, REALLY need hearing aids, I won’t be able to use them. They would trigger the vertigo. I really hope this isn’t the case with you. Although, having the vascular loop be the cause of it isn’t much better. I hope you get as good of news (was that correct? LOL) as you can from the Doc’s tomorrow.

Shatosa

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Welcome to the site. i wont repeat all the postings I have on here, but go to different topics and read them. It will help you to feel less lonely or like you are the only one. I have been through 40 years of this pain, and feel like laughing and swearing when doctors say, Get More Sleep and Exercise. i never sleep more than one hour at a time. I have tried many things for bedtime. Exercise? I also have spinal stenosis, just now diagnosed, so that explains why I can barely bend over, and walking or water exercise makes everything WORSE. This is really a disease of trial and error, because each person is so different. What helps person #1 and #6, might make people 2,3,4 and 5 really sick. Please continue to post, update us, read everyone’s posts in every category. Good Luck. :slight_smile:

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Others have talked about trial and error… so true as each of us is different…i am also chemical sensitive… so eliminating offending products does help with that…

Sleep does help, because your body goes into repair mode when you are in a deeper sleep. My dr argued with me for years to take a sleep aid and i finally did… i can be med sensitive so i cannot take some they would have liked to try…

I had symptoms even as a child …and my mother and an older sister also.

We have what is considered a genetic form. My youngest daughter also has symptoms but i always kept her active with dance etc…so she is not as bad as myself…

They tell fibro patients to start slow…some can only exercise a few minutes, and then build on it each day…if you jump into it , it can boomerang on you…stretching and walking are better .

Some supplements are so helpful…read up on fibro and malic acid, also magnesium…often give help…

Also build a tool box…microcurrent unit is of value, i also use a home laser device, the quell…etc…

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I too am newly diagnosed. I am on Cymbalta 60 mg twice daily. It does take your body up to two weeks for your body to ajust. My dose was uppered slowly and it took a good couple months to get where I am at. I also have a muscle relaxers and a sleeping pill plus Extra Strength Tylenol 2 x4 a day. Try to keep moving no matter how small. You need to have a real good talk with your doctor.

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Am sorry for your pain but know how it feels. If you don’t mesh well w/a doctor then find another who will listen to you. Not all doctors are alike. I personally use Savella 100mg 2x a day. It can make you very nauseous in the beginning but oh the joy when it kicks in. Exercise will definitely help w/the pain but just take it easy until your body adjusts to it. Start w/5 mins of stretching or even walking, then build up to your tolerance. I myself went from not being able to do much to know able to walk 2 miles a day, I’m very stubborn & overdo sometimes. It’s all about listening to your body & not pushing it past it’s limit in the beginning. I believe you are stronger than even you know. Fibro is a life long disease but we can all overcome each day & start over tomorrow. Another thing that has helped me is Ronan’s 5:3-5. Prayers & blessings to you.

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In England we get offered Amitriptyline, least I did and the doctor said he has used it with good results for other fybro patients. It really does help, and a higher dose during winter helps me as I don’t get to cycle so often. It helps with the pain and the sleep - It tends to make you groggy if you don’t sleep enough - so allow 12 hours rest - so if you have to get up at 5, then take it around 5 (and so on depending when you want to get up) and you might sleep a little earlier than usual.

It’s amazing how little diet is mentioned too - I was very strict for 18 months and avoided sugar - if it was in anything, and all simple carbs (potatoes, white rice, pasta, bread and other grains) eating really only meat and vegetables and fruit and the benefit to the fybro pain was amazing. I also have recurring vasculitis so have to be careful not to intake too much potassium as that can induce heart attack symptoms. CBD really helps with auto-immune illness too. Hope you find something helpful.

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Charto,
I have ro read this spoons book…just the little nlurb you gave me describes what I feel like completely. I decided not to return to the doctor that said that I could “get rid of” fibromyalgia by getting better sleep and exercising. Sounds ss easy right? HA. I actually got emotional in my family doctors office today. He told me “this is not something you can get rid of, this is a medical condition and one that I would be lying if I said I know everything about. It is still under research and no one can tell you its not real, because it is. You do NOT have to see this rheumotologist again, I can treat you and I will make you better.” He also told me I have to be open to taking a medication, and prescribed me Savella. He said he treats other patients with fibromyalgia and has had good results.

I start it tomorrow and I am just PRAYING this wont give me side affects and will work. He also took me out of work for two weeks and prescribed physical therapy. I meant to ask him about possible going to a pain clinic, but of course as soon as he came in to see me my incredible anxiety and brain fog made me forget everything I was going to ask, but thats okay. Maybe next time I will remember :grin:

I just cant express how much I appreciate you guys all taking the time to share what you can to help. I am having a really rough day today, I think I overdid things physically and I am in pain all over. I am completely exhausted and everything hurts. I think I will read a couple more posts and respond, then I will go to sleep so I can “get rid” of fibromyalgia…hopefully I will be able to sleep :crossed_fingers::crossed_fingers:

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Hippiemom,
I feel for you so much. You have a laundry list of things just like me. So you had the nausea from Cymbalta also…it was crazy that it was 24/7!! Exactly what I had, plus I had chills and teeth chattering. Was so weird. Haha yes I can totally relate to the fun of an adult son at home (he is 22) but in this day and age I dont discourage it…its so hard out there for them to realistically support themselves. Actually in my house, I am the amazon addict :flushed::joy::joy:.

Yoga I started, but due to my being overweight it was very hard, but I did manage to do some of it. A couple of you have mentioned avoiding sugar, and I need to get back to my keto kick to lose this extra weight and hopefully to feel better as well. WIN WIN.

Thank you for responding. I really appreciate and really needed to hear from others who understand this. :heart:

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Hi Carolyn,

Thank you, yes I have been reading and will continue. Thank you for welcoming me. It does seem like we all have similar but different stories. I am working with my family doctor now and I really REALLY hope it is going to work. He is sending me for core physical therapy. I just hope I can do it and most of all hope they are very familiar with fibro. I am going to try anything I can to start feeling better because I have felt lately like I am falling apart. I am so happy to have this forum and I will keep posting updates. Thank you so much.

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NODJ,

Oh thats an interesting medication I hadnt heard of. Thank you for sharing what they are doing there. I will mention to the doctor. He just prescribed me savella, a very small 35 mg dose twice a day to start, and I am going for core strengthening physical therapy. I have bad anxiety and pain, so the hope is Savella will address both. Im hoping so, but he also said its trial and error. I cannot ever sleep more than 6 hrs, no matter how hard I try. But that could be the anxiety too.

I am SO glad you mentioned diet. I was following KETO which is exactly what you said, meat and veggies, super low carb (no potatoes, pasta, bread, sugar). Before I knew I had fibro, I would tell my husband that when I had “cheat” days my body hurt. Was the weirdest thing (again, didnt know I had fibro at the time.) So I KNOW you are 100% correct, diet needs to very much be considered. I understand that now and will be starting up the KETO diet again. I am willing to do whatever it takes, because I really cant feel this way any longer. I need to work on everything and feel better, because I feel like absolute crap pretty much every day :pensive:. Thank you again for sharing all this info and taking the time to respond. I really appreciate it.

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Hi LMD,

My mom has it too. I may have had some symptoms and never recognized what it was, but im not sure. I think mine was triggered by a major stressful event, because I have been suffering since that. My mom’s turned up in her early 40’s, and I am 47 and now diagnosed. It is truely varied from person to person. Such a weird disorder that doctors still do not fully understand. Hopefully in the future we will all have better answers and they will make more discoveries that can help us.

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Hi Gail,

I am sorry to hear that you joined the club. I had a very good talk with my doctor today, and I am feeling hopeful. He seems to think Savella is going to help me and physical therapy. I am hopeful :heart_eyes:

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CDFRANCE26,

I am happy to report I went to my family doctor and expressed my frustration with what the Rheumo said to me. He made me emotional in the office by assuring me that this disorder is a medical condition that I cannot simply fix or make go away. I seriously started to tear up. Guess what!!! He gave me Savella…started me on the tiniest dose, 35 mg and said he will gently increase to hopefully avoid side effects. Your post gives me hope for relief in the future. He is sending me to physical therapy, i am just hoping whoever I get is very familiar with fibromyalgia.

Thank you so much for your kind words, because I dont feel very strong right now. I think its partly because of depression…but he said Savella should help with the mind and body. I hope so. I am going to try to pick myself up. All of you commenting and encouraging me is helping me more than you know. Thank you so much :heart:

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