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Neuropathy/IBS Pain
Hello,
I have been dealing with burning/tingling pain in my hands and feet, along with abdominal pain related to IBS for a few years now, with both reaching their height starting last year. I've been putting off medication, but I think it's time I discuss treatment options with my PCP and Gastro doctor. The pain from both disorders is wearing me down and limits my quality of life.
I'm lucky to work from home, but I rarely get out of the house. Exercising exacerbates the pain and also fatigues me (also dealing with off and on fatigue since last year, coupled with cognition fog). I'm in my mid 30s and in relatively good shape. I eat a lot of whole fruits and vegetables (low fodmap), I stay away from gluten and sugary snacks/drinks, and I drink a lot of water. I'm on a vitamin D and B12 supplement. The only thing off is my TSH which is slightly below normal. I've seen two Endo doctors and they both recommended watch and wait. I also saw a Neurologist who completed and EMG/nerve conduction study and it came out normal.
I'm starting to wonder if I'm suffering from fibromyaglia or chronic fatigue syndrome. I want to bring this up with my PCP but don't want to seem like I'm fishing for a diagnosis. I just want some relief from the physical pain.
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I am 83 years old and have had fibromyalgia and IBS for 30 years. I just recently started having nerve pain. My whole body began to burn light fire. I went to a neurologist and he has me on 100mg of Lyrica. It has taken over a month for it to take effect and still doesn't stop all of the burning pain. I hate this drug. It has the worst side effects of nausea,constipation,nervousness, and drowsiness. I feel like a zombie after I take the morning dose. Does anyone else have these side effects and do they ever stop or last as long as you are on the drug?
@note8book I have found that when my B12 is low, I get the parathesia symptoms; burning
with pain. I am on B12 injections weekly now. I skipped a week (by mistake) and boy did I
pay for it.
B12 is not something that is normally checked with your physical bloodwork....the same with D3. It has to be requested outside of your normal bloodwork.
You can also have what is called "idiopathic peripheral neuropathy" without having diabetes.
This is usually treated with Gabapentin.
Praying for you. I empathize.
@covidstinks2023 As far as I know I am not a diabetic and I have had a lot of labs done and no one has told me that I am low on B12 or D3. I take a daily multiple vitamin that has all of those vitamins in it. I am having a really bad day today. I am taking 50mg of Lyrica in the morning and 50 at bedtime. The one I take at bedtime seems to help and I sleep fairly well but the morning dose only makes me drowsy and like a zombie but does not stop the burning pain. I got up burning this morning and when I do that my blood pressure goes way up. It was over 200 this morning and went down to 179 after taking two blood pressure meds. It does this all of the time. I have had 3 times that my skin burned so bad that I had to get in the shower and run cold water over me to cool my off. I am also having brain zaps. There will be a sound just like an electric zap the will go through my head. On one occasion it zapped then there was a bright flash of light on the other side of my head just like someone turned a small light bulb on then turned it off. I'm seeing my neurologist this coming week and I'm going to tell him that something has got to give. I can't keep on living like this.
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1 Reaction@note8book I can't tolerate Gabapentin, but, it helps a lot of people with nerve pain.
Multivitamins do not normally give you enough B12 to make a difference if it is low. I was
amazed at how many things low B12 contribute too. I have to get weekly B12 injections.
Personally, I would question the doctor about the Lyrica. Did you have the brain zap
symptoms before going on Lyrica?
Praying for you to get some relief. Please update after your visit. Blessings & Prayers....
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1 Reaction@note8book, I’d encourage your exploration of what is going on. Lots to consider, especially with your symptoms. If you take multivitamins, I’d check B6, as that can be problematic if too high.
I had sine burning when I first went on mega doses of B12 to treat my deficiency, but that stopped after a while. I hope you can get some relief.
@note8book My doctor just this week put me on low dose (25mg of Pregabalin (Lyrica). He has me taking 1 pill at night for seven days and then 1 in the morning and 1 at night. I have no side effects so far but I think I haven't had hardly any "hibbie geebies" (pain and tingling, and numbness at night). It's only been since Wednesday. I will try to update when I have been on it a little longer.
@celia16 No I did not have the brain zaps before I started the Lyrica and I was not jittery and shakey either. I just got up about 15 minutes ago and I slept good last night but I woke up with my skin burning and shakey. I just took my BP meds and my 50mg of Lyrica. I'll see how the rest of the day goes. I usually get very drousy and feel like a zombie the rest of the day. I make mistakes and can hardly write my name because I am so shakey and jittery. I was trying to write something in a birthday card to my sister and I was so nervous I could hardly write. My blood pressure is already in the 170's this morning. It spikes up when my skin burns. Yesterday morning I was burning when I got up and my BP was 204. It went down to the 170's after I took my BP meds. I'm seriously thinking about getting a second opinon from another neurologist if I can get to see one. Here in our area we don't have enough doctors and it takes forever to get to see a specialist.
@gailannr My doctor had me start out the same way. I am now on 50 in the morning and 50 at night and I am no better than I was when I started and have been on it for a month now.
@note8book
Misery loves company, sorry to say. That whole thing you are going through sure does stink! I know my Covid did add to my misery, but that does not help. Sorry you are going through this and sincerely hope you get a solution!
I recently went to the Hospital twice because of the BP going over 200. Neither time did I get any relief! Once it went up to 230 in the Hospital with an experimental medication. There I had extreme painful shakes like never before with that new drug! No help after 8 hours there, so I left the Hospital with no answers! I am not diabetic either, have a normal diet and routine. I am just saying good luck, and you are not alone!
Can you adjust the strength of your meds? I just did that, and so far there is an improvement!
@fala I think that the reason my BP is so high is because my skin burns so much with the nerve pain.