New to this forum

[Brogan K]

Hi Everyone, I'm new to this forum and been having trouble working out how to post, so hopefully I've found it.

Hi Sunkacola
I've been looking at some of your posts and found them very helpful, thanks.

I am age 68 and diagnosed in 2003
I seem to have got by, up until about 5 years ago when I went through a great deal of stress that seems to have triggered symptoms.
I was wondering if you or anyone else is experiencing dreadful tingling up through both feet and up both legs. I never get a break from it and over recent months it's got so bad that I can't sleep much, which I know adds to the problem.
I'm on pregablin 200 a day, but I'm meant to be on double that, but find some side effects difficult.
This tingling and a general feeling of being very ill some days. I also suffer from balance problems, tinnitus, leg spasms, made worse if I eat sugar..
I could go on, but the worst thing is the nightmare tingling, it's exact the same in each foot and leg. Any anxiety heightens the problem.
The only break I get from it is when I sleep, and I'm not sleeping much.
Any information about this would be very much appreciated.
Thank to anyone who reads this...

 

[sunkacola]

Hi Brogan, that tingling is not uncommon with fibro. What I have found works the best for me is the use of a TENS machine. Other people have reported that weighted blankets help them with that. You just have to experiment and find out what works for you because the same things don't work for everyone.

I always recommend to people that if they are having difficult side effects from a medication, they should try going off it unless it is a life-sustaining medication. Side effects are your body's way of telling you that the medication isn't good for your body even if it is helpful for the pain. there are other medications you can try, but my best advice is always to make the lifestyle changes needed (ie: in your case don't ever eat sugar) that will improve your overall health which will in turn help you to manage the pain and may cause it to ease off. In your case also, whatever you can do to lessen anxiety is going to be very helpful to you.

To approach this with medication alone is going at it backwards. the place to start is back at the beginning, which is how healthy your body is, and what you can do to increase your health levels. From there everything trickles down in a positive way. Pain medication does nothing for your health.
Disclaimer: this is my opinion and I am not a doctor. My opinion is based on my own experience and that of many others, but is not intended to replace medical advice.

 

[JayCS]

To approach this with medication alone is going at it backwards. the place to start is back at the beginning, which is how healthy your body is, and what you can do to increase your health levels. From there everything trickles down in a positive way. Pain medication does nothing for your health.

Brilliantly put. Fully support the rest too.

 

[Brogan K]

Hi Sunakola, thank you so much for your helpful reply..
I'm working hard at cutting out sugar as one of the many things I'm trying.
I'm also trying to do some very gentle exercises in the Hooe it'll give some relief.

I have been trying to get my GP to send me over to a Neurologist, but I'm getting nowhere with this. I have a telephone appointment coming up on the 20th of this month, at which I shall push a bit more for a referral. It's really to rule out other possible causes for the tingling and neuropathic pain and balance issues.

It was my GP that put me on pregablin and I've explained that it helps for the first couple of days, but then it doesn't work as an ongoing medication. Most times I need to stop with it, then the same thing happens when I start back on it again. Then it stops working again and I wonder why I should stay on it, taking into account the side effects etc.

I really feel I need to be given a different prescription to see if it works better. Unfortunately the GPS aren't listening etc etc.
I'm wondering if others struggle with similar problem.
Thanks again for your quick reply
Sunakola x

 

[JayCS]

a different prescription to see if it works better.

If you do feel you can't do without, a new review came out last month by Farag et al. about 4 commonly prescribed fibro meds, over 36 studies and 12000 patients. Amitriptyline ('Elavil') was compared to pregabalin ('Lyrica'), duloxetine ('Cymbalta') and milnacipran ('Savella'). Amitriptyline is off-label, the other 3 on-label = FDA-approved, the only ones that are approved for FM, 2007, 2008 and 2009 respectively.
This review finds amitriptyline compares favourably to pregabalin, duloxetine and milnacipran. The results help decide which is best for a certain combination of main symptoms.

It found:

• “amitriptyline was associated with large improvement in sleep and QoL, a moderate improvement in fatigue, a small improvement in pain, and was not associated with improvement in depression compared with placebo. Duloxetine 120 mg was associated with improvement in all effectiveness outcomes, with the greatest improvements in pain and depression.” (Altho amitriptyline helps with “real” depression as opposed to fibro’s depression, probably caused by the pain).
• Symptom improvements by various dosages of pregabalin and milnacipran were only small.
• "Considering the dose-dependent adverse effects of all drugs, it is recommended to start at a low dose and increase slowly, if necessary."
• But "unfortunately" meds don’t help much ("modest effects"), so physical activity and coping skills are very important, and they recommend (all with medical evidence): CBT, exercise, tai chi, hydrotherapy, mindfulness… without meds, or with.

Remember studies and reviews are generally about averages, whilst we are all different, have many different co-morbidities and it may turn out that we also belong to fibro-subgroups. So that's even more reason to try changing meds.
Another thing is that docs tend to think they are in the know and we aren't, but recent studies are admonishing them to listen to us patients more, since their diagnoses and opinions have a quite high proportion of error. It's good to choose or train your docs to realize we're in the know, and to make sure we are by listening to our bodies and reading up (like here ).
I'm never going back on these meds again, only trying pain killers and amitriptyline, but with severe side effects.

 

[sunkacola]

It was my GP that put me on pregablin and I've explained that it helps for the first couple of days, but then it doesn't work as an ongoing medication. Most times I need to stop with it, then the same thing happens when I start back on it again. Then it stops working again and I wonder why I should stay on it, taking into account the side effects etc.

I really feel I need to be given a different prescription to see if it works better. Unfortunately the GPS aren't listening etc etc.
I'm wondering if others struggle with similar problem.

If what you say about pregablin is the case, I can't help but wonder why you would ever try it again. Seems to me you have conclusively proven to yourself that it is not going to be helpful to you.

The thing about sugar and other things that you may need to remove from your diet: if you don't remove all of it you will never know if it helps or how much. Working at something means you are trying to cut down, and no criticism of that. But you won't know whether it's even going to help you not to eat sugar unless you cut it all out completely. I highly recommend you do this in order to find out. This doesn't mean you can't have honey or agave syrup in moderation to ease the sweet cravings. But it does mean not eating any refined or even raw sugar at all. (which also means reading labels because sugar is in most packaged foods).

I know it's a tall order. I didn't have to do that with sugar, which I never ate much anyway, but I did have to go gluten free, and bread was my favorite food. I had to cut out ALL gluten in order to see how my body would do without it, and it was hard. But I did it and within a month my body changed for the better and I never looked back, even though I craved bread daily for almost a year. (BTW my problem that the gluten caused had nothing to do with fibro, but was serious).

So I suggest you cut out sugar completely for a month and see what happens.
The best thing you can do for yourself is get to the point that you are not dependent on medications.

 

[Brogan K]

Thanks Sunakola, it doesn't make sense to go back on the meds, but I've done it to get a break from the dreadful tingling. I've been off it for a little while now. And watching to see if there's anything else I can do on my own to ease the symptoms.
Sugar is one of those things, I'm trying to cut out, but I haven't given it long enough, from what you've said.
I might try to look at glutten free aswell for an extended period.
I do a lot of intermittent fasting, so it shouldn't be too difficult to read more labels.
Thanks again for your very welcomed input...

 

[caramani1967]

Hello Brogan, I’m having the same issues. I was wondering if your symptoms got any better, and if they did what did u do differently?

 

[Brogan K]

Hi Caramani, my symptoms are much the same, I'm not getting a break with the tingling up through my feet, legs and my body.
The last GP I talked to, on the phone, said it sounded like periferal neuropathy, and seemed to be reluctant to do a referral to a Neurologist, he said the waiting time is 100 weeks and a private appointment costs £260. He didn't see ant benefit that would come from doing a referral.
He suggested adding 10mg of Amitriptylin at night along with Pregablin which might help.
Since taking that I'm sleeping better, so in a way it's helped, but it hasn't eased the dreadful tingling.
Since that telephone appointment, I'm trying to do a very small amount of exercise and getting myself out in the sunlight, by doing this I feel a little bit more in control of my wellbeing, and this is helping.
Other than that there isn't an improvement in the symptoms, although I'm sleeping better and getting some weight off in the hope this will have an added benefit, along with the improved sleep routine.
I'm very sorry I can't give you a more positive response, but if I notice anything else that helps, I will add it to this post.
Please don't hesitate to list what's difficult for you, if you feel up to it.
Take care x

 

[JayCS]

the dreadful tingling.

For peripheral neuropathy / tingling the same supps might be helpful that I suggested to @caramani1967 yesterday here for pins'n'needles, if you're interested in supplementing next to or instead of meds...:

Typical supps for pins and needles would be B-vitamins, vitamin D (sun), magnesium, Ω3, ALA, ALC, curcumin & turmeric (if your stomach tolerates those 2) and treatments: acupuncture & TENS unit.

 

[caramani1967]

Thank you Brogan, keep me posted.

 

[Badger]

I've heard of Amitriptyline prescribed for the tingling sensation, a friend of mine has suffered with it for many years and struggles to sleep. It must be very frustrating to have the constant discomfort. Restless legs drives me mad when it flares up, but Amitriptyline helps towards sleep. It took a long while to adapt to the side effects. Hopefully you will find some relief with dietary changes, reducing sugar is sure to have some impact. I've decided to give intermittent fasting a try as a last resort to lose some weight, it will be interesting to see what happens. Atb

 

[Rojo]

I just joined and your post was first I read. I have had the same problem for several years but my tingling and pain is in my forearms. If I have been on my iPad typing for too long. I have used bio freeze and ice packs and deep massage or I just have to stop typing for couple days and rest my arms

 

[JayCS]

I just joined and your post was first I read.

Hi Roro, and welcome!

 

[Luketa]

I’m new to this forum so hopefully I’m responding in the right place. I’m 52 years old and my symptoms began in 2020. I have been a Children’s Social Worker for over twenty years, which an extremely stressful job as it involves working with victims of child abuse/neglect and their families. During 2020, I started working more overtime than usual which resulted in less sleep.I began having migraines and feeling dizzy. Shortly afterwards, I began having tingling feelings, electrical shocks, internal shaking, crawling feelings in my head, louder ringing in my ears, etc. I was healthy beforehand so I didn’t know what was happening and became increasingly anxious. I was visiting the emergency room every few days. I literally thought I could be dying. I googled to try to determine what was wrong. I was terrified I had MS, which popped up on internet searches. I saw a private neurologist after being told that my insurance provider’s neurologist would take months to schedule an appointment. I completed a NCS, a biopsy for small fiber neuropathy, MRI, blood tests, etc and until this day there is no diagnosis. My neurologist said my default diagnosis is fibromyalgia but my rheumatologist did not agree as I don’t have muscle skeletal pain. In fact, I don’t really have pain except for the migraines. I took a year off work. I’m scheduled to go back to work on November 17, 2022, and the migraines came back after being gone for a long time. The tingling has been consistent the entire time but mostly occurs at night. It is controlled by 300 mg of Gabapentine four times a day. It’s been hard living without a diagnosis. I am a very religious person and after having anxiety attacks at the beginning, I learned to put my trust in God. One day, I just felt like I heard God asking me if I know who he is as well as who I am. Was I a person who was going to crawl into a fetal position and act like I had no hope? Or was I going to trust in God and find comfort from his love and ability to heal me. Well after choosing faith, the anxiety melted away and the fight began. I started watching TBN and found extreme comfort in so many sermons, testimonies, and prayers. I started exercising every day on a stationary bike which helped a lot. I started reading a book called The Fatigue to Fibromyalgia Solution which describes a healing process that involves the SHINE protocol. I can add more about that later if it’s permitted. I pray and read the Bible almost daily and I have found a great deal of peace. It’s not that we won’t find challenges in life that terrify us or make us afraid. It’s what you do to conquer that fear. I’m not healed but I have faith I will be or at least faith that I can overcome any challenge through Christ who strengthens me. I know everyone is not religious but I can’t tell my story without telling what I did to greatly improve my physical and mental well-being. The anxiety was almost as bad as the physical symptoms. I just wanted to try to encourage someone and find find encouragement, especially since I’m going back to a very stressful job and still do not know what I have. I respect all diversity, including others who belief in a different religion on no religion at all.