Hello everyone. I was recently diagnosed with fibro, however my doctor has (true to most of the medical professionals I’ve asked for help) offered very little in terms of coping with symptoms and a way forward. He put me on gabapentin, however that medication seems to do very little except make me even more tired.
I’m not entirely sure I believe I have fibro. I started having severe muscle spasms in my back four years ago and that has progressed to being a daily experience. I have to take several muscle relaxers a day to prevent the spasms, but they do nothing for the pain, which is spreading to my hips and neck, down my arms and down my legs (that is distinctly nerve pain). No, none of my imaging shows anything wrong with my back and I keep getting told it’s “muscular” (whatever that means). I’ve seen a neurologist, chiro, and an orthopedic surgeon who spent a whopping 5 minutes with me before setting on “I think this is muscular” and again offering nothing. I’ve been in physical therapy, massage therapy, chiro, yoga, walking, trigger point injections, tens unit, all of it. Enough to make me believe that “it’s muscular” is a nonexplanation and cannot possibly be correct.
I have gained 40lbs since this started and am rapidly losing my ability to function as an independent adult. I can no longer perform even the most low impact, low stress physical activity, and I will be starting the paperwork to get the disability assistance to work from home since I miss so much work from the pain. My social life is circling the drain. I’m 32 and I’m staring down the barrel of being housebound, or even bedridden.
This probably sounds melodramatic, but I’m really scared. I don’t have any hope. I only see this getting worse, and I can’t even find a doctor who will help me. I have advocated for myself until I’m blue in the face but nothing seems to convince anyone that I’m in as much pain as I am. I think if they believed me, no one would be telling me it’s muscular and I need to stretch more.
If you guys have any advice for dealing with this, I am all ears.
Have you considered guaifenesin the only thing it does for me is take down the lumps but it doesn’t help with the fatigue or the sleeplessness or anything else so I’m not really sold on it need that much either but a lot of people have benefited so something might want to try good luck
What kind of doctor diagnosed you with Fibro, Marie? Have you seen a rheumatologist?
I agree with you: “it’s muscular” does not account for the terrible fatigue that you are suffering. The reason I ask about a rheumatologist is because there are dozens of diseases – some quite rare – that a rheumatologist deals with. Just because your bloodwork looks OK, doesn’t mean that you are. Obviously you’re not.
Rheumatologists are sometimes called the “Sherlocks” of the medical world. Might be worth a try.
Hello Marie - I have had Fibro for over 20 years and I am sorry you have now been diagnosed with it. I have been on many different medications throughout the course of my diagnosis. I am now on Lyrica and Cybalta as well as Oxycodone 3 times a day for pain. I have to sometimes take muscle relaxers in there too. So I totally understand your tiredness as well as the weight gain you mention. I have put on 40 pounds also and am not sure how or when I will be able to work it off. I can just tell you that it is a day to day issue that changes often. What works for you on one day may not work for you on another. You will just have to know what is in your “toolbox” to try. I wish you well in your journey and am here to support if you need it. Be as well as you can be. Elaine
Hi Marie,
So sorry to hear you are struggling with this to such a horrendous extent.
A rheumatologist might be of assistance. If you’ve already seen one perhaps it is worth looking into wholistic therapists. They train with multiple techniques and take a multidisciplinary approach to treatment. I’ve found that very helpful.
It is also worth speaking to a gp about mental health care plan options. I’m in Australia and am on a plan that subsidises some appointments with a psychologist each year. We work on reducing stress/ anxiety and coping techniques for the pain. I was at a point where I was scared ALL the time and it made things worse, so this support has really helped.
I know it doesn’t reduce the pain at all, but don’t forget you are not alone and you’ll always have those of us who understand on your side!
Hi There yes the doctors normally say muscular pain, probably because they cannot be bothered to investigate more. The doctors cannot see the pain you are in, as it is a invisible illness. I really feel for you as I know what you are going through. You probably think an every day thing like climbing stairs is like climbing a mountain. Anyway just the other week I got some cream from my doctor, called (fenbid gel ibuprofen). However, I am from the UK so not sure if they prescribe this where you live. It does seem to help. Also changed my pillows on my bed to a softer one.
I would try changing your doctor, to see if you can get medication without the weight gain. You poor thing, suffering in pain I do feel so sad for you, please take care xx
Hi I’ve had fibro for 30 years and been through the whole routine too. Have you been to a university pain clinic. They gave me the best diagnosis and help. From their I ended up seeing a rehab. Doctor who was able to prescribe the right pain killers.
When you apply for ssdi , include copies of all your medical records and a detailed description of your functioning work, social, daily living, etc. Your case will go faster.
I got fibro when I was 38, and I didn’t know the kind of life I would have for the next 30 years and maybe my life. It’s very depressing to have a life limited to going out for a few hours 1-2 times a week and being in bed most of the time.
Use antidepressants if you need to and manta
Oops hit the wrong place. Maintain your friends if you can. Find things to keep your mind occupied, I do a lot of reading. It’s not the best life, but at least we’re alive. Keep in touch. Mardi
Have your doctor(s) talked about sleep problems? When I was diagnosed about 25 years ago, the rheumatologist put me on Amitryptaline (Elavil), which is an old antidepressant, but improves deep sleep when taken at night. I also take Melatonin. Lack of deep sleep can cause pain as well as fatigue and inability to concentrate. You have it worse than I do. I hope you find a doctor who is interested in treating you rather than concluding that they cannot help.
Really sorry to hear what you are going through. I myself have suffered over 10 years with FM and have been through some emotional ups and downs. Right now as I type this I am experiencing pain. I will not fool you, its going to be a rough road but once you understand that it means a total life style change to manage the symptoms - then you have made the first and most important step. It took me a while to accept that I had to makes these changes and needed to slow down. I also have put on a lot of weight but presently I am pushing to get the weight off and live a more healthier lifestyle. The next important step is to get your family and close friends involved- you need a support system because you going to have bad days and will need their encouragement to push.