Neuropathy and fibromyalgia unbearable pain

Posted by jadene @jadene, Jun 15 9:53pm

I am 68 years old and was told I had fibromyalgia in its early years when nobody believed it to be real so I suffered many years trying to get help. Now for the last year I have struggled with leg and feet pain and I was told it was the fibromyalgia and exercise would help. My legs became so weak i started falling and the muscle mass started disappearing. They say it is neuropathy. I am on gabapentin, duloxetine, tizanidine and hydrocodone and started my 2nd round of physical therapy. Honestly nothing is working very good and I keep falling 😌

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Profile picture for bdobbins @bdobbins

I’m not yet 60 and I choke on my food occasionally. A year ago I had to have my esophagus enlarged due to thinning. That alone tells me there is some atrophy. I’m choking again. I don’t want to go through the procedure again. It wasn’t painful until afterwards. I have SFN, Trigeminal Neuralgia, migraines, occipital Neuralgia and FMS. I’ve been told I have CFS as well. Darn it….I’m just tired of all of it. I’m waiting for a miracle so I can be whole again.

Jump to this post

Oh how i understand you. It has been a long road trying to get better. But new things just keep coming and the old just get worse. My choking happens 2 and 3 times a day. It's awful to choke on nothing and choke on food. I eliminate foods that make me choke but now I am running out of things I can eat. I cut everything up tiny and eat very slow. I wish you well and good luck. Choking is a terrible thing to live with.

REPLY
Profile picture for dlydailyhope @dlydailyhope

@jadene
You are young and only 68 and should not be dismissed or invalidated just due to age, being female and having chronic pain. Please, do not give up advocating for your health and care. Do you have a family member or friend who could go with you to all of your appointments and review all test results, imaging, doctors’ notes? If not, ask for help locally. There may be health advocates you can get through senior centers, social workers, Medicare/Medicaid, health insurance.

Have you requested all medical records from all doctors and reviewed them in detail yourself? The more educated you can be on your tests, treatments, medications, diagnoses, etc. the better. Doctors miss things that show up on reports all the time. I have found many things myself not ever mentioned to me by a doctor. You may need to find better, highly rated doctors to help you because it doesn’t seem you are getting the right diagnoses and treatment and you don’t seem to be getting information and understanding of your current health conditions, only your symptoms (need neurologist/neuromuscular specialist, ENT, orthopedic spine specialist, endocrinologist for thyroid/adrenal gland, pulmonologist for lungs, hematologist/oncologist for blood abnormalities/tumors, physical and occupational therapists, and nutritionist/dietitian to help with diet/supplements to support health improvement). You should be getting biopsies of your thyroid and lung nodules, ultrasounds, and updated MRI of cervical spine to make sure you do not have new degeneration and compression of spinal cord (myelopathy) and nerve roots. Same goes for lumbar spine.

From what you have shared, it seems to me you have fibromyalgia, neuropathy, spinal compression, thyroid issues/nodules, adrenal gland tumor, lung nodules/tumors, vocal cord changes, swallowing issues, muscle wasting, low potassium, low folic acid, balance/dizziness/weakness and falling, etc. Here is what Artificial Intelligence responds with to your conditions:

“ It sounds like you're describing a complex set of medical conditions and symptoms. Each of these issues can significantly impact a person's health and quality of life. Here's a brief overview of each condition and how they might relate to one another:
1. Fibromyalgia
A chronic condition characterized by widespread musculoskeletal pain, fatigue, sleep disturbances, and cognitive difficulties. It can be exacerbated by stress and other health issues.
2. Neuropathy
Refers to damage or dysfunction of the nerves, often leading to pain, tingling, or weakness, particularly in the extremities. It can be caused by various factors, including diabetes, infections, and autoimmune diseases.
3. Spinal Compression
This can occur due to herniated discs, bone spurs, or other spinal issues, leading to pain, numbness, or weakness in the limbs. It may also contribute to balance problems.
4. Thyroid Issues/Nodules
Thyroid disorders can affect metabolism and energy levels. Nodules may require monitoring or treatment, depending on their nature (benign or malignant).
5. Adrenal Gland Tumor
Tumors on the adrenal glands can affect hormone production, leading to various symptoms, including fatigue, weight changes, and mood swings.
6. Lung Nodules/Tumors
These can be benign or malignant and may require further investigation. Symptoms can include coughing, shortness of breath, or chest pain.
7. Vocal Cord Changes
Changes in the vocal cords can affect speech and swallowing. This may be related to neurological issues or other underlying conditions.
8. Swallowing Issues
Difficulty swallowing (dysphagia) can be caused by neurological conditions, structural issues, or muscle weakness.
9. Muscle Wasting
This can occur due to disuse, malnutrition, or underlying diseases. It may be related to the other conditions mentioned.
10. Low Potassium and Low Folic Acid
These deficiencies can lead to various health issues, including muscle weakness, fatigue, and neurological symptoms. They may be related to diet, absorption issues, or other medical conditions.
11. Balance/Dizziness/Weakness and Falling
These symptoms can be interconnected and may arise from neurological issues, muscle weakness, or medication side effects. They can significantly increase the risk of falls.
Management and Considerations
Given the complexity of these conditions, a multidisciplinary approach is often necessary. This may include:
Medical Management: Regular monitoring and treatment from healthcare providers, including specialists such as neurologists, endocrinologists, and pulmonologists.
Physical Therapy: To improve strength, balance, and mobility.
Nutritional Support: Addressing deficiencies in potassium and folic acid through diet or supplements.
Psychological Support: Counseling or support groups may help manage the emotional impact of chronic illness.
If you or someone you know is experiencing these symptoms, it's crucial to work closely with healthcare professionals to develop a comprehensive treatment plan tailored to individual needs.”

Jump to this post

Thank you so much for all of this information. I have been to everyone of those specialists at one time or another with them not being concerned about any of it, so if they thought it was unconcerned I wasn't going to keep coming to the city to have them say " we'll it has grown and a new one has developed, but we will check again in 6 months " same thing for the adrenal gland.

REPLY
Profile picture for megroberts @megroberts

Thank you so much for this detailed response to Jadene and others. I have just begun to try to address worsening pain in my left hip and leg, sciatic nerve, knee joints and lower back muscles. This pain, which is clearly all connected, began to get worse during this past year. Like many others posting here, have had a struggle getting medical personnel to respond appropriately to my pain. I have been to physical therapy, want to start again, had an x-ray, visited an orthopedic surgeon, who clearly just wanted to jump to hip replacement, which I do not want to do except as a last resort. I am going to start a new supplement, and will see if that provides any relief. For some reason, my providers seem very resistant to scheduling an MRI, which might reveal more information about tissue damage. I continue the quest to get back to a more normal, active life. Best wishes to everyone here struggling with chronic pain.

Jump to this post

I’ve starting having distonia. Crazy ankle twisting and weird muscle movements in thigh like an electrical thing. Just buzz and whole thigh pulls u
Right along with drilling screws into my toed(feels like)
Neck fusions and severe stenosis
Low back surgery and severe stenosis
Mostly legs at night but during day when neck inflamed more
Too much to go unless interested!”
It’s nights I can’t handle!
Vicki

REPLY

My doctor put me on Lyrica for my Fibromyalgia pain and it helps me a bit but I think being on gabapentin and Lyrica together would help but he won't prescribe the gabapentin for me. I'm thinking of seeing another doctor and seeing what would happen. Because I know my body and the pain I'm in is extremel sometimes that I just want to lay down and cry but I can't do that when I have to work full time to be able to make it. Does anyone know any doctors in Menomonie area that might help me.??

REPLY

Hi. I'm so sorry to hear that you're going through this. Have you been tested for diabetes? I would check the symptoms of diabetic neuropathy and similar conditions before resigning yourself to having fibromyalgia. Doctors don't always have the time to fully investigate, so it pays to do your own thorough research sometimes.
I hope you find the answers to your symptoms & hope you feel better soon.

REPLY

I'm saddened to read how many of us are still suffering. I was diagnosed with FM 20+ years ago, and struggled daily to live a normal life. Finally, after so many drugs not working, I was prescribed low-dose naltrexone (small NIH study available), and I am finding some relief! Less pain, and more energy! Not 100% yet, but it's only been a few weeks.

I hope this information helps...

REPLY
Profile picture for setta @setta

I'm saddened to read how many of us are still suffering. I was diagnosed with FM 20+ years ago, and struggled daily to live a normal life. Finally, after so many drugs not working, I was prescribed low-dose naltrexone (small NIH study available), and I am finding some relief! Less pain, and more energy! Not 100% yet, but it's only been a few weeks.

I hope this information helps...

Jump to this post

I am so afraid to try anything besides my pain management because it was so difficult to get in to them. And with so many different things wrong with me back, ECT....if they take away the only type of relief, even if it doesn't work well, I'm afraid that I won't be able to get it back and then I will be reduced to suffering so bad I can't enjoy the simplest things in my life. Unfortunately I have had to go through this a number of times because I moved out of state or doctors have moved on and every doctor has wanted to start over. It can take years for a new doctor to build all the test results up to just get right back to where I am at. I have never asked to try anything new or stronger out of fear. I am on the same dose of pain meds that I have been on for the last 35 years. No it doesn't take my pain away but it at least makes it bearable so I can step down on my feet in the morning or helps me tolerate physical therapy. No I don't feel that I am addicted because there are times I only take a half of pill because sometimes I have a good enough day I can get by with a half. The first thing a lot of people want to say is I take too many drugs. But they don't live in my body when my back won't let me stand up straight or my skin is burning as if I have a blistering sunburn to where I can't tolerate clothing touching my skin, or walking on what feels like nails. I thank you for your suggestion and I will bring it up with pain management.

REPLY
Profile picture for catukf @catukf

Hi. I'm so sorry to hear that you're going through this. Have you been tested for diabetes? I would check the symptoms of diabetic neuropathy and similar conditions before resigning yourself to having fibromyalgia. Doctors don't always have the time to fully investigate, so it pays to do your own thorough research sometimes.
I hope you find the answers to your symptoms & hope you feel better soon.

Jump to this post

My A1C is 4.2. Being diagnosed with fibromyalgia is a very long process. At least it was for me. It took years of testing because I was diagnosed. I also have other conditions adding to my problems of pain. Actually fibromyalgia comes along with other conditions. As soon as I was diagnosed with neuropathy they decided to do a workup for diabetes but I still have the difficulties of low blood sugar. And seems my A1C is 4.2 I was told diabetes is not something I need to ever worry about and people do get neuropathy without having diabetes because I questioned it myself.

REPLY

My heart really goes out to you. I'm in a very similar situation/conditions.
Nothing is working after 4 1/2 years of being poked & prodded. I'm at the point where pain medication is the only other option however, getting va physician to prescribe it is a whole other story 😒 soooo... What,? I just suffer?? What happened to "first do no harm"
I'm not giving up! It's inhumane 🥺

REPLY

What does your MRI say about your spinal health? Have you had your MRI read by more than one surgeon or doctor?

I had weakening of my legs a few months ago I had a neurosurgeon. Tell me I had conversion disorder, in other words, it was a psychological issue. However, as an occupational therapist myself, I knew that the spinal cord stenosis in my neck would cause weakness in my legs. So I wonder if you have a structural anomaly in your spine.

Have you ever looked at your own images?

REPLY
Please sign in or register to post a reply.