Feel Like No One Wants To Help Me..

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kasmaflower

Active member
Joined
Sep 27, 2014
Messages
34
Reason
DX FIBRO
Diagnosis
08/2015
Country
CA
State
ON
This August I saw a Rheumatologist who I had to drive two hours to see. He told me I had fibromyalgia and said there was nothing he could do to help me. About two weeks ago I saw my GP who pretty much told me no to any idea of a pain relief other than Lyrica. Desperate for something to help my pain, I decided to take the Lyrica. It has done nothing to help my pain. I still ache and spend most of my day in bed. It seems like no one cares to help me in the town I live in and I'm suffering because of it. :sad:
 
I'm so sorry you are having so many problems with your Drs. If the Lyrica isn't at least taking the edge off maybe you should see if they can up your dosage or try something else. Just my opinion. I also spend most my days in bed so I know how you feel. I hope you gets some answers and soon.
Hugs~
Brandy
 
Thank you for the kind reply. It really is no fun to be in bed so much, as you know first hand.
 
Hi Kasmaflower,
Sorry to hear about your troubles. It can feel overwhelming when you aren't getting the help you need. I understand meeting with a new doctor and having to explain all over again all of your health issues. But do try to look for another doctor near where you live. Its really beneficial to get a medical staff that understands FM somewhat at least and will work with you, but you know that.
Is there a Pain Management Clinic near you? If your rheumy says he can't do anything for you and your GP says he won't give you any pain meds ask for a referral from one of them for the pain clinic and get new doctors before you fire them. CRY in front of your doctors. Let them see how much pain you're in and how much you need relief. CRY when you ask for a referral to the pain clinic.
 
Fyi...Lyrica didn't work for me, got severe headaches. I agree, you must find a type of medical doctor who believes in fibro as well as you. You need these people on your side! Keep looking until you find the right one!
 
This August I saw a Rheumatologist who I had to drive two hours to see. He told me I had fibromyalgia and said there was nothing he could do to help me. About two weeks ago I saw my GP who pretty much told me no to any idea of a pain relief other than Lyrica. Desperate for something to help my pain, I decided to take the Lyrica. It has done nothing to help my pain. I still ache and spend most of my day in bed. It seems like no one cares to help me in the town I live in and I'm suffering because of it. :sad:

Hello. I understand What your going through I had the same exact thing happening and it makes me very very angry It is very very hard to deal with fibromyalgia. When people don't understand just leaves me angry and lost. Fibromyalgia has effected everything for me. I am currently taking Tramadol and Gabapentin and both are helping my pain.
 
kasmaflower,
I understand what you mean. I dealt with pain for over 10 years with no answers. Every doctor I dealt with had a different reason for my pain. Then this January I found a new GP who understands FM and believes me when I talk to him. He believes in pain management and sent me to a rheumy that knows believes in FM and finally I got some answers. It is difficult to deal with explaining over and over.... But when you finally find the right one its so worth explaining it .
 
jDevilstompa, That's great news!

Sweetpea, You're absolutely right!

**************
I read a string of articles about Fibromyalgia and learned a few things. There are 3 drugs that Consumer Reports Best Buy Drugs have approved of. They've been on the market for 15 years so there is a lot of data to support that they are helpful in treating pain due to FM.
The drugs are:
generic gabapentin
generic amitriptyline
generic paroxetine- IR (Immediate Release)

There are also 3 FDA approved medicines for FM and others that are prescribed "off script", meaning it may be a drug intended for Parkinson's but they've found that it helps some people that have FM. The Consumer Reports Best Buy Drugs says the FDA approved drugs for FM did not meet their Best Buy criteria: 1. too expensive 2. "...they have not been shown to be clearly more effective or safer."
Those 3 drugs are:
1. Anti-depressant: duloxentine
2. Anti-seizure med: pregabalin
3. Anti-depressant: milnacipran

All of the drugs used to treat FM are:
1. Anti-depressant: amitrytiline, nortiptyline, fluoxetine, paroxetine,duloxentine, and milnacipran
2. Anti-seizure med: pregabalin, gabapentin
3.A Muscle Relaxant: cyclobenzaprine
 
Thank you for all your replies. I have to see the doctor in two weeks and I plan to be more firm with him and hope he listens.
 
Not sure if you are in California or Canada.....there are some studies showing marijuana as having higher efficacy than some of the prescriptions out there. Unfortunately my state doesn't approve this so I go without but if you are in California you might want to check it out. If it were legal for me I totally would! Also show up to your appointment with your log of daily symptoms and pain level fluctuations...it will put substance behind your verbalizations. Good luck!
 
I'm sorry to all who have to feel this way. I feel like everyone in my life including my family and husband don't want to help me. Not even that I feel they all have turned thier heads the other way and rendered me crazy and a hypochondriac. Cracking jokes as to how I walk funny and assume the worst of me when I'm in a fog. It's so discouraging, at times I don't know how I go about my life. So I can empathize with you and I wish I had something to say to you that would make things seem better. But I hope they do for you. This is my first entry by the way.
 
Hi Kasmaflower,

I live in Ontario too and I am not sure who your rheumatologist was as I have seen one for 5 years in Mississauga. I saw one once in Oshawa a couple of times and she was useless. The latest studies have shown that drugs are not the best form of relief for Fibromyalgia as they only mask the pain and doesn't take it away, can cause long term effects, and can be addictive. You start a drug your body becomes immune to the dosage and then the drug needs to be increased....not good!

The best thing is exercise. I myself have been on a long journey trying to find what works best for me and I have tried tons of drugs but the side effects made me worse and the narcotics made me feel like I was overdosing. I also had injections in my neck, shoulders, and back/spine and that made things worse instead of better.

The #1 thing to do is exercise and I don't mean hard core either. Yoga, stretching, lengthening, walking, cardio and perhaps light weights 3-5 times per week for at least 30 min. Eating a proper diet and losing weight if you need to. I also do physio, massage, water therapy, chiro (laser and electro...NO MANIPULATION), mindfulness, and see a psychologist. I do these things on a weekly to bi-weekly basis. I take ibuprofen up to 600mg when needed. I listen to my body and when it tells me to stop or take a break, or lay down, or whatever it may be....I do. I could say so much more of how and what I have done but that would take too much time. I even put in a pool this summer and just bought a new mattress which came today to help me out. I do other things too that are natural but it depends on you in every sense of what you are willing to try, do, and how determined you are and of course patience.

If there is anything I can help you with let me know. I have worked hard to get where I am and the doctors won't help unless you can direct them and get referrals and try different avenues out.

Good luck! Blueeeyes
 
Brandy,
Can you find another rheumy who will help you? Ask when you call if he/she treats fibro. Pain management is a great suggestion that someone mentioned. Lyrica did work for one week for me and then they had to up it to full dose and it didn't work. I am so sorry and can seriously relate to docs not helping and not wanting to be bothered. Can you switch GP's search for one who knows about fibro.

The doc that diagnosed me was very educated in it and she prescribed the standard drugs. She's gone now but was assertive and was determined to figure out my problem. I was so fortunate in that aspect. I take Cymbalta, tramadol, neurontin, as well as klonopin and trazodone for sleep problems. Cymbalta seems to help a lot of people I know who have Fibro. I don't know why they didn't give you that with the Lyrica or with tramadol.

I know how terrible it is to be stuck in bed feeling like you have the worst flu in the world, at least that's how mine started. I use the supplement magnesium 1500 mgs for muscle pain and when I am out of it, my pain escalates. It may help you, everyone is different. I also use a heating pad, salan pas, those patches you can put on your areas that hurt the worst, they give some pain relief when I am flaring. I don't know what else to say but if you can't change docs, you really have to stick to your guns and say I need help with pain. I lay in bed all day, please give me something else to try.
Best of luck
Kristine
 
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