April 9, 2018 at 7:53 pm #11706
Has anyone had to deal with severe nerve pain since their diagnosis of PF/IPF?
I had been dealing with this, mostly in my joints and extremities (fingers and toes) for quite some time before I was seen by a Rheumatologist who put me on medication to help alleviate the pain. The medication is essentially a narcotic for nerve pain specifically, and as she described it, “it puts the pain receptors on the nerve endings back to sleep”. It has helped, and I certainly have found relief, however, I am investigating a terrible headache that has lasted for days with several of my doctors, notably my family doctor and eye specialist. One thinks it is a concussion due to a car accident I was in this past December, and the other one thinks it could be a side effect of the medication. Both timelines seem to align.
Obviously my preference would be for my headaches to be caused by a medication, since I could just stop it and hopefully the symptoms will go away with time. That said, I don’t want my nerve pain to come back. For those of you who might have experienced or are experiencing nerve pain since your diagnosis of IPF, do you have any natural remedies or tricks that help with your pain? I know many of us deal with raynaud’s syndrome in our hands and feet, but I don’t think I have this. Even knowing how you deal with this might be helpful for me, as the pain is similar in my hands and feet.
Thank you all in advance for your help!
April 10, 2018 at 10:34 am #11707Terry McloughlinParticipant
just 2 weeks ago, I started to feel pain in my finger and wrist joints. It moved to my shoulders and became much worse. At the same time, I noticed a skin pigmentation change to purple on the underside of both forearms. I went to my GP and he ordered blood tests, some of which indicated anemia with low hemoglobin and red cell count. I am waiting on the other results that may indicate if I should see a hemotoligist or a rheumatologist. It may be related to a bone marrow issue. Are you experiencing these symptoms?
April 11, 2018 at 7:54 pm #11737
Thank you so much for replying to this topic of mine, as I wasn’t sure whether others could relate to this new pain I have been experiencing. Although, I certainly wish you weren’t experiencing any pain, I am thankful to hear from you.
With regards to my bloodwork, I am chronically low on hemoglobin and iron and have to take supplements for both of these things. I’ve been taking the iron supplement for probably about 6 months now and my last round of autoimmune bloodwork didn’t show that either of these levels had improved much since starting the supplement. Did the doctor offer you any insight into what it might be? Although, I do know they are careful not to offer too much speculation about things if they are unsure. For nerve pain specifically, I went to see a rheumatologist and that who has been following me for the management of this symptom specifically, although he does correspond at times with my pulmonologist as well. Let me know how the rest of the bloodwork turns out, if you wouldn’t mind?
Unfortunately just recently I was told I have issues with my bone marrow, or it appeared so via my bloodwork. We’re still trying to sort out what these “issues” might be at present time though, as it looks like I have some premature bone marrow failure although we aren’t sure what this is caused from yet.
Wishing you all the best as you continue to work with your teams to resolve this and get some answers. Please keep us posted if you’re comfortable doing so. Will be thinking of you!
April 10, 2018 at 12:39 pm #11710Dixie RackhamParticipant
I have pain in the bottoms of my feet and my right toes on my feet. I have to stop working and just get off my feet for an hour or so I’ve never had this kind of pain I take Aleve and get on with life there’s so much to do around here I can’t sit around to much Dixie
April 11, 2018 at 7:57 pm #11738
Thank you so much for joining the PF forums and contributing to this thread. I’m very grateful for those who take time to offer their insights.
Have you noticed anything specifically that triggers the pain in your feet? Alternatively, are there any remedies that help alleviate the pain for you? I know you mentioned that you take Aleve, but does it help? I’m really sorry to hear of this pain, and when it is in our feet, it can feel so debilitating so I hope when you continue on with it, that it is tolerable for you. Have you (or are you going to) look into the causes of this with your doctors? Sorry for all the questions 🙂
Wishing you the best Dixie.
April 12, 2018 at 11:50 am #11759Shaw JenningsParticipant
I have not considered the possibility that there may be a correlation between my IPF and nerve pain; nonetheless, I have experienced nerve pain for at least 3 or 4 years. I was first diagnosed with IPF last October. Initially, I thought the nerve pain was due to arthritis in my back, but eventually it was suggested I see a Neurologist who diagnosed me with Peripheral Neuropathy. My nerve pain is mostly in my foreams down to my fingers and below my hips to my feet. I experience a dull aching pain equally in both sides of my body with intermittent shooting pain on either side. The pain is aggravated by standing and walking for extended periods of time.
I was initially prescribed Neurontin, which helped but made me feel uneasy. Then Tromodal which helped, but due to the opioid concern it was suggested I try Nortriptyline and finally Lyrica, neither of which I could tolerate. I have since visited a pain management doctor who strongly suggests I try a Spinal Cord Stimulator, which I am not convinced will work for Neuropathy. For now I accept the pain as part of my life and there isn’t much that can be done other than a hot shower or bath that does give me a few hours of relief. I only hope it does not get worse. OTC pain meds have not helped.
Also, in the past two years I chased a diagnosis for dizziness and nausea, which after seeing multiple doctors and experiencing a wide variety of tests I was diagnosed with diplopia (double vision), which was corrected by adding prisms to my eyeglass prescription. The dizziness and nausea abated immediately. No one can say for sure how I got this nagging condition, but it is suspected that I had a concussion that was caused by a fall in my backyard where I slipped on wet concrete and slammed my head. I did not experience any headaches.
Have your doctors suggested or have you been tested for Neuropathy and possibly have they discussed any of the meds I mentioned?
April 12, 2018 at 7:58 pm #11764
I am really glad to hear from you, and hope that you are doing well. Thanks for your reply to this topic!
My doctors are still trying to determine for certain if there is a correlation between my IPF and nerve pain; however, the timing just seems too coincidental for it not to be related at all. That said, both my pulmonologist and rheumatologist are willing to work together to draw conclusions from my bloodwork/labs, symptoms I experience, etc. which I am grateful for. I don’t know if you saw any of my other posts recently about a persistent headache I’ve been having (which varies in intensity, but can get so bad that it causes me to lose my balance and vomit) but due to this, I’ve been referred to a neurologist as well. I mention that because I wonder if I should bring up neuropathy as a cause of my pain? I am seeing the neurologist for follow up to these headaches, which I’ve also had an MRI and CT scan for as it could be a concussion following a car wreck I was in not that long ago. Regardless, I really appreciate your sharing your experience with nerve pain with me (although I wish you didn’t have to experience it) so I can give some thought to questions I can ask the neurologist when I go for the first time.
I am actually on Lyrica right now for the nerve pain, and they just increased my dose. I think it helps with the nerve pain for sure, although it was also supposed to help improve my sleep/quality of sleep and I certainly don’t think it has done that. I think if anything it has worsened my sleep. Due to this headache, I was in ER recently when I lost my balance and I received the Tromodal via IV for pain relief. It did help, but did not take the pain away entirely. Otherwise, the rest of the medications don’t sound familiar to me. May I ask what was intolerable about the Lyric for you? I think one of my next columns will be writing about adjusting to pain as part of daily living with IPF. Like you, I’ve kind of just come to accept this, as frustrating as it is…
We have so much in common Shaw. I also have a prism in my eyeglasses, and have for years! While investigated these headaches, my GP sent me straight to the eye doctor who did confirm that while my eyes have changed significantly in the last few years (ie. the prisms need adjusting/changing, as does my prescription) my eyes are healthy and the cause of the headache is likely neuro-related, hence the suspicion of a concussion after hitting my head in the car wreck. It just seems bizzare to me that the concussion is appearing 4 months after the accident, although my eye doctor (who can’t conclusively diagnose a concussion) said she sees these symptoms appear frequently in this window of time since an accident. She called it post concussion syndrome.
I think I will ask the neurologist to consider neuropathy as a cause to some of my nerve pain, particularly in my extremities.
Thank you so much for taking the time to write me and explain your experiences – they really are so helpful in giving me some direction and questions to ask in upcoming appointments. I hope you are doing well otherwise Shaw!
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