Thyroid and Fibromyalgia help please.

[Peanut31]

Hi

Many of you will of seen my posts on how I am struggling with a stiff neck and neck pain that I can't seem to get rid of. I have blocked ears as well, and ringing in my ears.

My ears seems to get worse when my neck is stiff. I have had ENT look in my ears to be told they are ok, I have an appointment with another ENT specialist next week (privately) and I have an MRI scan on my neck via the NHS. I have been to A&E twice as the pain was unbearable and they suspected a bleed on the brain. This was all clear after an MRI head scan. I was sent home with Naproxen and pregablin to take. I don't really like taking them as I have to take omeprazole with them so they don't damage my tummy.

I have had this for weeks and weeks, and looking back I have always suffered with neck issues, but not everyday.

I am waking up every morning with a stiff neck, stiff shoulders with pain everyday, and the only way I can control the pain is with painkillers, the pain doesn't go away when I take painkillers, it is just dulls the pain. My neck is restricted on movement as well all the time.

I have been to the physio, chiro, had acupuncture, you name it I have tried it. The only relief is pain killers and a hot water bottle. They all say my muscles are really tight, despite seeing them regular. The osteopath said my neck muscle were tighter than when I originally saw him.

I am self medicating on NDT and I am only on 1 grain at the moment and have another week before I introduce more, so I know I am not on the correct thyroid dosage yet.

I was on T3 (self medicating) and was starting to feel better, on 37.5mcg, until I started with intense headaches and this neck stiffness so I stopped it as the T3 seemed to make the pain worse. I don't have the headaches as much, but my neck and shoulders are tight and painful, I have no idea why this happened.

I never got on well with Levo via my GP, so stopped this ages ago. My GP doesn't know what to do and just fobs me off.

Researching I have come to the conclusion that I have Fibromyalgia. I have booked to see a pain specialist and they also deal with Fibromyalgia. It's not something I want to accept but all this points to Fibromyalgia, apart from I am sleeping well. I have had no accidents or injuries to cause this issue.

I am in tears everyday with the pain, I have not been to the gym for ages, due to my thyroid issue and being in pain.

I can't accept what is happening to me and I don't want to accept this as my life. I am trying to stay positive but, it's damn hard.

I am hoping that when I got the right dosage of NDT is will help. but I would of thought the T3 would of helped me.

At the moment I can't see light at the end of the tunnel, yes I am depressed and I can't snap out of it.

I have been on the Fibo forum and its not as friendly as this one, in fact I was told that Thyroid and Fibromyalgia are separate issues and not connected. I was only innocently offering advice to a post, but they didn't like that and I get a telling off, which upset me.

I have Hashimoto's and under active thyroid.

Any advice or support would be greatly appreciated.

Best Wishes

Peanut31

[Highland49]

Hi Peanut,

I see from your previous post that you've been taking ashwagandha. I've just googled ashwagandha and neck pain and found a review on Amazon.com that refers to the same symptoms as you when taking this herb. The review mentions the possibility of being allergic to herbs of the nightshade family. The reviewer stopped the supplement then tried it again and their neck started tightening up again. Other reviews mention a headache.

Another post on longecity.org mentions neck muscles tightening.

I've read somewhere that it's not good to take with any autoimmune disease as it can cause a flare up. Hopefully this might be the cause of your symptoms? That is so bad if it is. You think a herb is natural but I took Agnus Castus years ago and that made my fatigue 10 times worse.

That's awful that you had a bad experience on another forum. Some people are too defensive, so their comments come over badly. We're much nicer on here 😊

I so hope you're feeling better soon. You've definitely been through it.

[Peanut31 in reply to Highland49]

Hi

Thank you sooooo much for your reply.

Yes I’m taking Ashwagandha and I have just started taking a higher dosage.

I’m going to stop this immediately and see if this helps.

Thank you so much for advice.

Best Wishes

Peanut31

[Highland49 in reply to Peanut31]

You're welcome 😊 I've only just had the email notification that you've replied, so apologies for not replying to your reply before now. Are you feeling any better? As Marz has mentioned, looking into self injecting B12 would be a good next step. You can't overdose. The only thing you need to consider to support the absorption of b12 is a good quality folate and iron supplement, plus potassium rich food and drink.

Keep us posted 😊

[AnnaSo]

I have gone through similar, it was due to low hormone levels. Looks like you’ve been changing meds and doses frequently- so did I, which meant for me I was not on right leave for some time. Only getting to the right dose of NDT (3 + 1/4) eventually got rid of the problem.

[Hidden in reply to AnnaSo]

Hi I am relieved to hear you say that as have just posted my experience neck was tightening like cramp left side neck there weeks of that I could only assume was neck cramp sleeping neck too high or similar. Then it went from there to also affect my back neck unbearable pain 9/10 .Then tooth pain near my sinus nerve tooth I couldn't bite down on throbbing pain.and in lower jaw.all left side . The tooth pains eased off but still hurts back neck is bad still. All I see is things related to heart etc. As I have been hypothyroid for a long time heart issues I do worry about . As the Dr decided to not increase my starter doses after just 50 mcg and left me I wonder if that could have caused problems low hormones as you say . It's worrying when came on our the blue thanks

[birkie]

Hi peanut 31

I have fibromayalgia and just last year I went deaf in my left ear it lasted about a day then I got some hearing bk but it is like being on a plane when you want to pop your ears..I was diagnosed with hyperthyroidism on the 21 of September this year and now both ears are the same..and like you I have server neck and shoulder pain seen ent to be told it's my age and we will give you an earing aid 😠 and my GP suggested going to a Phisio private..I really think doctors need pushed..even when things come bk normal if you still are sympomatic then something is wrong..push for more investigation I'm still bugging my doc about my endo app still waiting..😠 hope you manage to soRte something quick because pain is sole destroying 😢😢

[Peanut31 in reply to birkie]

Hi

How are you dealing with the pain. Everyday I wake up with a stiff neck and sore muscles in my shoulders and it’s also my lower back. This continues throughout the day.

My ear problems have been going on for months now.

Best Wishes

Peanut31

[birkie in reply to Peanut31]

Hi

I was given a painkiller called duloxetine it did help for a while but it never really took the whole pain away and now I'm back to square one I'm in pain everyday iv not slept all night..sometimes I will get my hot water bottle and place it at the back of my neck and lay in bed on one pillow it sometimes helps me sleep..also my muscles at my shouders are really hard..I'm pretty sure if my GP ad this he would sit up and take notice..

Also I don't know if you have tried rubbing creams for muscle pain..I've tried loads..but I tried one out of the body shop it's for muscular pain..it is a creamy yellow colour with brown seeds on top you melt it in your hand then apply to the painfull area I must say it helps me a bit also it looks like soap but it's not 😊 I think my pain is worse due to my hyperthyroidism because I'm shaking a lot like I'm cold but I'm not..so my muscles are tightening up a lot 😢

[Marz]

Have you considered injecting with B12 ? Phials can be bought on-line and syringes ... B12 has been used as pain relief in many countries. I use it to help with my aches and pains and other symptoms. B12 works on the Myelin Sheath that protects all nerves.

[Peanut31 in reply to Marz]

Hi

I’ve never thought of that. I supplement b12, but then it always goes over range on results, so I cut back. My GP had a fit at me as I was over range.

There is no connection with my neck when I cut back as looked back on my records. I was told it was dangerous having too much B12, but then I’ve read that you can’t have too much B12 and that it’s not dangerous.

I’ll look into your suggestion.

Best Wishes

Peanut31

[Marz in reply to Peanut31]

Your GP should know that testing whilst supplementing shows skewed results. This is laid down in the Guidelines your GP should have read ☺ Only around 20% of your B12 result is available to be transported to the cells where it is needed. The PAS forum will have info where to buy jabs. Somehow jabs work better for many...

Hope you soon feel better 😊

[Peanut31 in reply to Marz]

Hi

I doubt they are that knowledgeable!!!

Well, one GP’s within my practice told me it was anxiety I was suffering when I first started to have thyroid issues and I had been misinformed about Hashimoto’s.

A few months later I went back avoiding that GP and saw my allocated GP, bloods taken and phoned a few days later to be told I needed to go on thyroid medication ASAP. TSH 12.2, is obviously wasn’t anxiety.

Needless to say I avoid that previous GP. My allocated is currently off so I’m not able to see him plus you struggle to see him as he’s the best out of all of them so popular.

Thanks for your help.

Best Wishes

Peanut31

[Hidden in reply to Marz]

Only thing is... doesn't B12 on its own affect the other B levels? I'm sure I read that on here. A good B-complex should be OK though

[Marz in reply to Hidden]

Always good to take a good B Complex when taking B12 supplements - to keep all the B's in balance. Often not enough B12 in a Complex when there are absorption issues - so best taken alone 😊

[Hidden in reply to Marz]

Right, thanks. I have started taking a B-complex, which has 100mg (I think it's mg, very small print) B12 per tablet - one tablet per day. Would it be best to take extra, and if so how much?

I saw the pharmacist the other day and she said the occasional slight tingling in my feet could be B12 deficiency.

[Marz in reply to Hidden]

Have you had your B12 tested ? Needs to be around 500 at least ...

Jarrow Methylcobalamin 5000 mcg from Amazon x 1 pot then take the 1000 mcg x 1 pot.They are lozenges that need to be dissolved under the tongue. Thereafter a GOOD quality B Complex should maintain levels.

[Hidden in reply to Marz]

Thanks, will look into it.

The last time B12 was tested was December last year, 481ng/L (180-900). The comment was that I had enough stored for 2 years so no need to test again till then!!!

[Marz in reply to Hidden]

That may well be true but it seems thyroid sufferers need good levels. Have you read the book - Could it be B12 ? - by Sally Pacholok. Film by the same name on YouTube. Worth a watch to learn more. Low B12 is linked to brain shrinkage and cognitive decline among other things - including ataxia.

[Hidden in reply to Marz]

Thanks, I found that out from this forum! Haven't got around to getting the book yet but copied this quote posted on here:

In extract from the book, "Could it be B12?" by Sally M. Pacholok: "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml." (*ng/L is the same as pg/ml*)

[BadHare]

Sorry you have so many health issues, & your meds aren’t helping.

I was diagnosed with FM 10 years ago, & have trauma related pain in my spine, multiple joints, & arthritis.

I found a neck support pillow to be a marvellous help, though it can initially exacerbate the pain. IKEA sell s cheap one, though it’s a tad hard.

Ask your GP to refer you to your local pain management clinic which should be a big help with coping with chronic pain. Both courses I attended run a weekly support group, & activities for The physically challenged. It helps sometimes to not have to explain how we feel to those who don’t live with a chronic pain condition, & no matter how **** we feel, to find something to laugh about, even if it’s falling over in Qi Gong.

I found there was too much moaning in the FM group I joined, which made me more depressed. There seemed to be too much acceptance rather than a how to improve our conditions approach like this wonderful forum & the PA group. Whilst my diet is as good as I can achieve/afford, appropriate medication & supplements have done wonders to ameliorate my health conditions. I already took supplements like magnesium B complex D3 & iron, & ate a whole food diet when I joined this forum i’ve been obsessed with clean eating & gut health for years, which helps, but being veggie, I was unaware of the ill effects of soy. I added extra iron & sublingual B12 which helped my eyelashes grow back, & a mineral complex which has given me thicker hair. NDT &T3 helped reduce “flu” pain & my parasthesis, & reduced my wakefulness. B12 helped even more.

I’m aware everything seems really daunting to do at first, so perhaps try to increase your NDT slowly, remove inflammatory foods from your diet, then look at supplements that should help you feel better. There’s no magic wand, but hopefully you’ll start feeling better after a few months.

[Peanut31 in reply to BadHare]

Hi

I’ve booked to have a consultation at a pain clinic in London. They are also specialist fibromyalgia.

I’m desperate to sort this out. My GP doesn’t know what to do, they just sent me home with more pain killers and said wait for my neck scan results (this is being done via the NHS).

I hate throwing painkillers down my throat. It’s just masking the problem. If I know what’s going on I can adjust my diet lifestyle to try and help myself.

Sorry, just seen more of your post, for some reason only a few sentences show at first.

Yes I agree, I find the fibromyalgia forum very unwelcome and not a positive forum at all.

Best Wishes

Peanut31

[BadHare in reply to Peanut31]

I’m sure FM/CFS/ME & more are Un or under treated hypothyroidism, or micronutrient deficiencies. Check the PA society for B12 information. I’d be taking a lot more drugs, & more to counteract the negative side effects had I not got a grip on my health in a functional way as well as self-medicating. I no longer trust GPS or consultants.

I wrote the first half of my reply on the bus, then continued on my journey home, so apologies for the break.

I hope the medics you see are helpful. Keep reading posts & information on the positive forums so you can get as much help as possible.

[Donnaca]

I use something called a fascia blaster to help with my pain and stiff muscles, it’s helped me so much. Look up Ashley Black fascia blaster and follow her protocol of heating up first.

I get neck pain if I eat processed bread and lots of gluten - it’s understandable we get neck pain when our thyroid is there.

[Peanut31 in reply to Donnaca]

Hi

Thanks for your advice I’ll look that up.

I’ve been gluten free since September 2017.

Best wishes

Peanut31

[Confused01]

Hi Peanut,

I have a Fibromyalgia, CFS, diagnosis and thyroid damage (amongst other conditions tut).

In relation to your post, amongst many other problems and ongoing symptoms, I get extreme neck pain (& many other body areas) and chronic tinnitus. Both awful and with daily affect on lifestyle.

I’ve seen many specialists, treatments, but none worked. After years of trying to find solutions I now wonder if my body simply can’t cope with the ailments collectively and reacts in the symptoms we share.

That would also explain why Specialists can’t cope with the symptoms variations and we end up going around in circles .

A massive factor can be stress, so do everything you can to eleviate it.

Xx

[HMBradley53]

Hi There I have the same issues however I do not take any Thyroid meds yet as my thyroid is still in normal range and my antibodies are high and so is my ANA. I have been dealing with neck issues for years but the last few months I have been going to the pain center and they have been giving me cortisone injection and pressure point injections that are helping. The Rhumetologist diagnosed me with fibromyalgia and wanted too put me on meds but I didn't want them. So of course nothing else she can do I am getting the most help from the pain Center. If you have one where you live you may want too start Also try some moist heat and the proper neck stretching that definitely helps too. Good luck any questions please feel free too ask.

[Peanut31]

Hi

Thanks for your reply.

I definitely have thyroid issues (blood test confirmed this several times).

To have an autoimmune disease, thyroid issue and fibromyalgia (still to be confirmed) is a lot to deal with. People just with one issue is enough.

I wouldn’t wish this on my worse enemy.

Best Wishes & Take care.

Peanut31

[traet02]

Hi Peanut31 can I ask how old you are? I'm assuming you're female