Hi all, I just wondered if anyone has any advice regarding this post. I know we are not GPs but if anyone is going through anything similar, I would feel reassured. I know there is a lot to fibro and I don’t know if I fully understand the ins and outs of it yet as recently diagnosed (November). I am just becoming worrisome about the nerve pains I am experiencing. I am taking gabapentin. I have had to reduce due to intolerable side effects. So 300mg AM, 300mg PM and 600mg evening. The thing is I don’t seem to becoming any better, I feel that it is doing nothing to help so I do have a telephone consultation with my GP to address this. The nerve pain seems to be getting worse and has gradually spread to everywhere, my fingertips, toes, the soles of my feet are killing and can only sit for so long without getting pins and needles and then when I do get up, they feel numb resulting in me limping to walk. The pains are very electric shock like. I’m also getting awful rib pain. Feels like tightness around them and they are incredibly sore to the touch. The fatigue just gets me down. Had FBC and all levels are normal. Headaches are a nightmare, had to go to the opticians due to loss of vision and flickering. Assured me my eyes were ok but these episodes are causing me to have panic attacks. Just feel very down at the moment with feeling this weak. Is this normal for FMS and am I being a hypochondriac? Sorry the for long post.
Nerve Pain: Hi all, I just wondered if... - Fibromyalgia Acti...
Nerve Pain
Have you had any thyroid testing? This is typical low thyroid high cortisol. There are adaptogens which might calm the nervous system.
If your TSH was well under 02.0 that would be considered normal. If that is true inflammation may be coming from another source which is often shown up in antibodies. It's easier to do a trial of gluten free and dairy free eating since doctors may not want to be thorough.
I have coeliac disease so already following a gluten free diet x
Are you sleeping well? High cortisol sends adrenaline/epinephrine which adaptogens can treat. There is always a trigger but can be difficult to find. It can be a gut infection or a food sensitivity but needs investigation. You could check out Schisandra and L theanine or even the real Gaba. If it is a gut infection there are herbs for that as well. You are definitely not a hypochondriac, your body is not making a mistake. It is giving you symptoms for a reason.
All the symptoms in this thread are also hypothyroid symptoms, so it makes me think even though you were told your tests were normal the ranges are very wide which makes "normal" very misleading. In fact better tests to see if your thyroid is off is the reflex test where they tap your knee and also the Resting Metabolic Rate Test —
What Is Metabolic Testing? Metabolic tests measure the rate at which your body burns calories and uses oxygen. This test doesn't seem to be expensive.
jj, the second test is using a mask and inhaling and exhaling seeing how your body uses oxygen and carbon dioxide. This also lets you know how well you burn calories which is the reason weight loss is difficult.
When your metabolism is lower than normal it has much more to do with weight gain than the actual calories you eat.
All the symptoms are also pretty common to fibro, though. Especially when newly diagnosed and still trying out meds and working out self help measures.
Well, they should both be ruled in or ruled out or you will never know, right? What test determines the diagnosis of fibro? She mentioned FBC but I would guess, both conditions would look similar or do you think one will explicitly say it's "fibro".
She has been officially diagnosed with fibro by a rheumatologist - in November. Of course, it’s always good to know of other potential causes.
My question was "what test, what symptom, makes it official?
I'd be interested in any antibodies. Are there any particular to Fibro? There are several for Hashimoto's and those are usually what they find in Fibro patients.
There is a cytokine test being developed but anything that ruffles your immune system is going to create cytokines.
What may be the saddest part of all this is that a small amount of T3 could be the most valuable treatment no matter what you wish to call it.
There is no specific blood test for fibro. They do blood tests to rule out a range of other conditions - autoimmune panel included. The diagnosis is made based on a range of factors. Fibro is not considered to be an autoimmune disorder.
Anyway, the OP is seeing her GP tomorrow and hopefully they will be able to help.
you say you are coeliac, if you have not had vitamins and minerals tested, I highly advise. You may not be absorbing properly. From my own experience bloods showed I was defficient in Folates and vitamin D and low on B12. After being prescribed supplements my pain/tingling/ stiffness/swelling in my members subsided. I took the advice off thyroid forum here. Hope this helps. Also as Heloise says, recommend getting thyroid antibodies done .
Well the appointment is tomorrow so will ask for an alternative.
I’m really suffering with this pain and fatigue. Will see what the GP recommends tomorrow, thanks.
So sorry to hear this. FM can be very worrying and incredibly stressful. We all know how you feel!!
I would venture that gabapentin is not working for you in the way it should. Time to ask the GP for something else...and stand firm on this 
Personally, I would also ask for a referral to a rheumatologist and to a physiotherapist.
In the meantime, have you tried a TENS machine? And are you able to do things like gentle stretches (these help the pain a lot in my experience)? xx
I’ve already seen the rheumatologist. She sent me away with a leaflet of FMS and told me to lose weight. The whole appointment was telling me about fasting diets which I didn’t feel helpful. I’m not majorly obese but do struggle to lose weight. Always stable. I’ve also had physio, the exercises are fine but not helpful at all. I haven’t tried a tens machine no, are they helpful?xx
Doesn't sound helpful. Movement/stretching plays an important role in reducing fibromyalgia pain, so I would definitely look into this a bit more. Start here, perhaps: fibroguide.med.umich.edu/pa...
Also: youtube.com/watch?v=fONfo3O...
I find my TENS invaluable. It distracts from the pain rather than taking it away entirely - but you can pick one up for about £15 or £20 so not too expensive.
Another good tip is Epsom salts in a bath for 20mins to relax your muscles.
Unfortunately, fibro is quite a 'self help' disease. We often need do a lot of work ourselves...but there are many people on this site who can share tips with you to help daily living seem a little less painful xx
Thank you for the links. I especially liked the second one. It wasn't overwhelming. I followed along and did some of the stretches right away.
Hi,I take amitriptyline for nerve pain. I also have carpal tunnel syndrome and I too get "electric shock" feeling in my hands when I do something such as stab food with a fork.
The rib tenderness is one of the things that bothers me the most. Before being diagnosed with fibro, my GP tested my vitamin D and found I was very deficient. He thought that might be the reason of the rib pain, but I still have it 2 years later.
The headaches and visual problems might require a referral to neurology. It sounds a bit like migraine symptoms, but my GP referred me as those symptoms can also be related to MS.
We all have such varied symptoms that cover a range of areas, it's just horrible 😔
Thanks for your reply. I have the feeling in my hands and feet a lot. I work on my laptop every day so this doesn’t help.
The rib pain is agonising, anything hurts with it, yesterday my two sons decided to climb on me and and they were sore all day. They have tested my vitamin D and this is all ok plus I do take them every day on my own accord. I just buy them from Boots as I was low in the winter. I just feel like something is not right. I have tremors as well, my hands will shake for no reason whatsoever and it’s hard to shake them off. I’m hoping to have an in depth discussion tomorrow. Hopefully the GP will listen to what I have to say🤞🏼
You list everything I am suffering with and the more I repeat an action the worse the pain gets. If you come across anything that helps let me know x
I have all the above too so not sleeping well.
Have you seen a neurologist? You may need an an MRI x
I haven’t no. What would they look for on the MRI?xx
They would look to see if you have nerve damage. I had been diagnosed with fibro, however I wasn’t happy because they should rule everything out first and I hadn’t been ruled out for anything neurological, so I told my gp I wanted to see a neurologist as many of my symptoms suggest MS. Thankfully I was referred and have had a MRI and waiting for results now. Not saying this is your issue, but just to put ones mind at ease, it may be worth pushing your symptoms to your gp. X
Hi there, suffer with same things, the pains you are experiencing with the pins and needles in your leg sound like a slipped disc ( I have two damaged discs so know what that feels like) the headaches sound like migraine which is probably caused by stress again I also suffer with this. The feet and leg pains are the fibro, after having this all my life I was finally diagnosed with fibro and it seems to me that whatever this thing is it makes your muscles weak and makes you more prone to all sorts of problems. Stress is the biggest problem so you have to keep an eye on that. Hope this helps love to you xx
Hi jjsmum hope jj and you are OK. What you are describing is what everyone and myself on here and elsewhere are going through. Never feel like you are a hypochondriac, even when someone who thinks they are qualified calls you liar strsight to your face and then refuses to apologise when the results of a test light you up like a Christmas Tree. I just do anything I can to take my mind of what is going on with me, concentrating on the swines (kids) was good but they don't really need me anymore 21-30 years young) and they laugh at me trying to do a crossword while flaking in and out of consciousness, blinking because I can't see the clues because of sparkles in my eyesight and placing random squiggles on the grid as my hands have handom spasms. Other than that just keep going, I know it is hard, keep the mind active and keep the mood up, take the tablets and sod the experts.
Yup...I get all those...I've had fibro over 20 years now and it seems to get worse for me even though a doctor told me fibro doesn't get worse (load of bull) my feet have hyper sensitivity - it's like a numbness but it's actually not cause its just like constant pain...and when the doctors do tests with your feet you can still feel that - it's worse when your feet are cold and yes I have the same in my hands too...for my hands though I have one of those exercise squeezers and that sometimes helps...the rib pain is awful...feels like your ribs are a vice and you can't get a good deep breath in without something popping or cracking...doctors are pretty useless with fibro...some still treat it as a psychological issue but there are things that point it at something more physical but it depends how good your doctor is and if they bother to research or let you present them with your own research (believe me doctors sometimes hate that though) I've been given up on now...no longer have any medication or help at all...so I have daily pain now...as for walking it's painful but no one cares - massaging my feet helps and I use the CBD cream from Holland and Barratt...then put socks on to keep feet warm and hopefully less painful...my poor cat can't even rub her head on my feet without me pulling my feet back...it really is that painful.
Sorry this post is long but it is just to say you are not alone, you are not a hyperchondriact - these are symptoms and you are valid!
It's the doctors that need to learn more and help more...let's hope long covid provides treatment for us fibro suffers as well seeing as it's virtually the same thing
Bless you x you are not a hypochondriac, I think with fybro there are so many things going on at one time , wen I was first diagnosed back in 2006 or sorry wen I started finding pain in my feet , legs , hands & thumbs no one cud say wat was wrong & they sent me to the mineral clinic in Bath where I was understood ! It’s such a shame you can’t cope with gabapentin !!! I had side effects for 2 weeks then all of a sudden they stopped but over time they wasn’t doing anything so I progressed to pre-gablin along with duluxatine, 8 tramadol & max dose of Amytriptaline , so I wished I had spoken out at the beginning as now I cud of saved years of pain x I hope you get the help & Dr gives you pain relief wer it’s needed , take care. X
Thank you for replying. I’ve had my telephone conversation this morning with the GP and they have switched my gabapentin to pregablin. I will have to taper off the gaba first though x
The trouble with a fibromyalgia diagnosis is it can mask other diseases, for eg I had rib pain which turned out to be bile stone blockage, but I also have Hashimoto’s ‘s hypothyroidism, insulin dependent diabetes and this last week tested positive for sleep apnoea. I have all over chronic pain and exhaustion, but had more acute pain that dr. never ‘cured’ that seems related. I have had ( until covid lockdowns) regular ‘MOT’s by gentle spinal manipulator ( McTimoney trained) which helps with neck, shoulder, rib, hip pain, and taken to the hypothyroid protocol of making sure folate, ferritin, B12 and vit D are in the upper part of their ranges. Self check these with private blood tests as GPs often reluctant to do any vitamin/ mineral tests, and when they do they accept results at lower end of range, even their supplement doses are too low. I doubt your Boots vit d would be strong enough to raise your levels...I take a liquid one of 4,000 ug with appropriate vit K included, and have taken as high as10,000 when first started. I have improvement of some symptoms like vertigo, more acute pain in legs since I have improved mins/ vits, but no idea if I had fibromyalgia only whether I’d notice the difference. May be worth exploring, it’s good with fibro to feel you can take some control over this wretched disease.
Hi jjsmum. I'm so sorry to read about your health problems. I can so relate to a lot of what you've written. It sounds like you've done all the necessary things to get a good diagnosis.
If every your not happy with something a doctor or specialist tells you, you are always able to get a second, third or as many medical opinions as you feel is necessary.
A suggestion would be to do a web search for medications that are used for fibromyalgia. Once you have a list, my suggestion would be to search for how efficacious they each are. You may have to read through a few research papers to find the necessary information so it's helpful to have a free online medical dictionary open while you read.
Many people with FMS have 2 or 3 medications that help with different aspects of fibro.
Another suggestion is to get enrolled in a pain clinic often found at hospitals. You get to see specialists who are up to date on what medications are useful/new/work well.
I've had FMS for over 10 years now. I wouldn't be able to do much if I didn't do some stretching as often as I can/remember.
Of course, it helps to eat healthily, sleep well, drink fluids, exercise/stretch.
The first peice of advice my doctor gave me was the best peice - "don't loose your sense of humour".
If there is a pain course that you can sign up for, that can be useful, as well.
Don't overdo it on the days that you feel 'better'.
Read up on 'spoon theory'.
All your symptoms are FMS symptoms. Plus there are more and can come and go as they please. Sorry.
If I think of anything else that may help, I'll add later. I'm having pain tonight. That's what I get for not setting my alarm correctly this morning and sleeping through medication time. Ugh!
I traded Gabapentin for Lyrica. But I have neuropathy in my feet and hands from being a type 2 diabetic. So I'm not sure if some of that pain is from FMS. I guess part of it could be. I too have tremors in my hands and wrist pain. Just so many variables.
Oh and my high blood pressure was causing my migraines. I get about one a month now.
Getting the right medications for you can take some time. I have a shoe box full of them but I'm fighting a lot of illnesses and pain. Keep telling your doctor whenever you have problems. Mine has a secure email site that I can send her a message. She's pretty good at getting back to me quickly.
I hope you get some relief. Prayers, hugs, love and light.
Have you tried Ambroxol for neuropathic/nerve pain? works well for me for PD nerve pain. Some links below on it, including the science. It's been around for a long time as a cough treatment, but not well known at all for nerve pain. Not habit forming and has a very good safety record. Your doctor may not be familiar with it, but if he/she takes a close look at it, don't think they would recommend against you trying it if it can help, but you should ask them. If you need feedback from others with fibro who this has worked for recently, I can send you some links to their comments, just let me know, could be a real answer for you like it has been for them. That said, sincerely hope you find some relief.
I take Lyrica, but dr. has me on 150 mg only. I've been having worse and worse pains, and they don't want to do anything. I'm trying to get mine increase. I used to have the severe nerve pain, but since I had a back fusion, it's been better. However, the tight muscles and inflammed tendons have been causing major havoc. I wish you the best in getting support and answers.
Hi, neurologist put me on Topirimate for nerve pain & a migraine preventative. Took me 2 goes with it as found side effects difficult to deal with but once you get through this it really is quite an effective drug. Also Amitriptyline is one of the best drugs for nerve pain. I didn't do so well with either Gabapentin or Pregablin.
They wouldn’t let me take amitriptyline due to being on sertraline x
Hi, I’m so sorry you’re having these problems and that the gabepentin did not help. Hopefully the change in medication will give you some relief.
I get awful nerve pain in my hands and feet too and have suffered with this for 7 years. I do find that Gabapentin helps a little. I also found the side effects tough at first but it got better the more I became accustomed to it. I try and take lower doses when I can (up to 600mg a day) and only take when I need it. The nerve pain comes and goes and not every day. Sometimes I beat it, and sometimes I don’t.
Funnily enough I also tried amitriptyline for the nerve pain but found that Gabapentin worked better. I guess we’re all different in what does and doesn’t work.
Other things I do that helps are resting my hands and feet on hot water bottles - more of a comfort and distraction technique than anything else! And strangely alcohol can sometimes take my mind off it!
I’ve been diagnosed with chronic fatigue syndrome due to debilitating fatigue / exhaustion but not fibromyalgia (but think I have both). A neurologist also thought I had neurological functional disorder. Sometimes, I think all of these conditions are the same! I’ve had an MRI so know it’s not MS. But like the others said, I would request an MRI too just in case.
I also get this feeling where I feel like I’ve been poisoned. I feel drowsy and dizzy, with shivery / crawling sensations and major brain fog as well as hand tremors and wrist pain. Thankfully, I don’t get the pain in other parts of my body (ribs etc) that so many seem to suffer from on this forum. Maybe that’s why the doctor thinks it’s CFS and not fibro?
Wishing you all a relaxing and as pain free as possible evening. Big hugs and hope the pregablin works better for you! Xx
Hi jjsmum,
I am taking 1200mg Gabapentin 3x a day, I also take 60/100 co codamol 3x daily, I have a compromised sciatic pain in my lower back and osteoarthritis in my cervical back which impinges on the nerves that run down my neck, shoulders, arms and hands. I was also prescribed 30mg Duloxetine 1xday as I was told it works really well for nerve pain with the Gabapentine and it does make some difference, maybe ask for Duloxetine.
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