Muscle and joint aches all over

[smurph37]

Hello all I just wanted to share this in the hope that someone may have had similar experiences that I can identify with and try and figure out more about my health really.

I got diagnosed as type 2 eight years ago and about 4 years ago my blood sugars started going really high (H1bc 14) for about 2 years. When I then had a severe DKA - when it was realised I was a LADA. I also had extreme work burnout at the time.

Since then I've had daily aches and pains all over and a lot of fatigue - I halved my H1bc and at present it is 60 which I know is still too high but for the Amt of muscle aches and pains I have it really feels disportioncate. Over past cpl of months it has got worse - so achy in my neck and across shoulders and done my spine. I wake up early with lower back pain. I've aches down my arms from shoulders. Pain in buttocks at times and sometimes my thighs and knees and ankles. I've had more than usual tingling and numbness in my hands and burning under my feet. It feels like I have my period all the time (not much pain but some pain in lower abdomen) when chopping veg it's hurting my wrists and I'm less and less able to carry bags with significant Amt of weight. I am only 37 and I am so afraid of the future if this is what I'm like now. I do my best to keep things in the day but I definitely feel very alone. I have been to the doctor eventually- I've a big block when it comes to my health - after many blood tests and revisits later he has referred me to a rheumatologist, which is good and at least it's the right direction I feel.
Is it possible to have this much issues from diabetes after this length of time having it and the H1bc I've had- or does it sound like something else? even on days when my blood sugars are very good I have aches all over. When I go high now though it's way worse even at 10/11. I'm highly sensitive to carbs e.g. I've to dbl my insulin for bread and so I try to stay away from it. I've so many food sensitivities and I react to lots of stuff. I try to eat lower carbs. Sorry for the long winded post. I would be sincerely grateful for any suggestions

 

[librarising]

Welcome @smurph37. Before my diagnosis ( as a T2 which turned into a LADA 4 1/2 years later ) I was always very tired.and lacking energy.
Soon after diagnosis, I abandoned my high carb consumption and part of my tiredness/lethargy disappeared. Some still remained.
I'd felt that I'd been suffering from low thyroid for about a decade, but one GP told me my tests were normal and I was simply getting older. In 2012 my 'diabetes care' GP agreed to test for thyroid antibodies. A positive result and a visit to an endocrinology consultant later, I started on levothyroxine for my thyroid. Getting my dosage right has largely dealt with any remaining tiredness.

LADA and Hashimoto's thyroidism are both auto-immune conditions, and auto-immune conditions often occur together.

Lately I've been looking into vitamin D deficiency. A registrar from the same endocrinology/diabetes dept.once told me I had diabetes because I'd been low in vitamin D. That can also cause fatigue and muscle ache :

https://www.healthline.com/nutrition/vitamin-d-deficiency-symptoms#section1

There may be many more causes for your symptoms butI just wanted to share mine
Geoff

 

[smurph37]

Hi Geoff - thank you for sharing that and I am very happy to hear it has improved somewhat for you I completely forgot to say I also have been in levythyroxine for past 8 years. My gut around that and from researching online is that even though apparently my levels are now within right ranges - Maybe what is an issue for me is something they are not testing for. I think they downplay what people with thyroid issues go through and it's like your within this range so your fine when ppl (e.g all my moms side of family and some friends) do have muscle aches n pains...can't lose weight etc etc.

My recent blood tests show only a slight bit low for vitamin d so I have been taking d3 for past month. I wonder should I be taking more than I am. What mg's did you take Geoff? Thanks for the welcome also

 

[Kentoldlady1]

Hello smurph, and welcome. I am new here myself and know very little about lada, but I am also on levo.

I dont know what your thyroid levels are but there is quite a huge range within which.we can be " normal". Most people with hypothyroidism function better when the tsh is at the very lowest end of the normal.range. this usually means at about 1.0 or below, but it all depends on the range the lab uses. Might be worth getting yours reviewed?

 

[Rachox]

Hi Smurph, are you on Statins? They can cause muscle pains.

 

[librarising]

I also have been in levythyroxine for past 8 years. My gut around that and from researching online is that even though apparently my levels are now within right ranges - Maybe what is an issue for me is something they are not testing for. I think they downplay what people with thyroid issues go through and it's like your within this range so your fine when ppl (e.g all my moms side of family and some friends) do have muscle aches n pains...can't lose weight etc etc.

My recent blood tests show only a slight bit low for vitamin d so I have been taking d3 for past month. I wonder should I be taking more than I am. What mg's did you take Geoff? Thanks for the welcome also

From other posts of mine :
"In 2013 I was diagnosed with clinical hypothyroidism. Much research followed. Eventually following a switch from theNHS's preferred Levothyroxine (T4) to self-funded Natural Dessicated Thyroid (a mixture of T4 and T3) I felt better and in control."
"Dr Malcolm Kendrick (a Scot) on the inability of Levothyroxine to adequately treat low thyroid sufferers.
https://drmalcolmkendrick.org/2015/05/01/treating-thyroid-patients-like-children/
I no longer take my GPs T4 prescription, but prefer to source my own Natural Dessicated Thyroid, which is largely T4 but includes some T3. With thyroid there is no 'one size fits all' treatment."

Some people do OK on T4 but for others it doesn't really work. My dosage also totally suppresses my TSH something which alarms most GPs, but also something which other thyroid sufferers know is necessary. I take 4 tablets which equates to 160mgs of T4 and 36mgs T3.
Many GPs treat to get TSH within 'normal' ranges while still leaving the sufferer with symptoms. I've spent hour after hour on thyroid forums or googling thyroid issues.

Vitamin D ? Within a range of 80 - 125 mmol/L seems optimal. I take 5000 i.u. daily (125 mcgs). A year's supply cost me around £10.
Below 80 mmol/L can seem to affect the following : blood pressure/cancer/heart disease/flu/T1D/T2D/metabolic syndrome/alzheimers.

Would you describe any of your pain as arthritic ? I used to suffer from gout which I 'cured' using baking soda. I now take a dose every night before bed. Going lowcarb probably helped with my gout as well.

Whilst I am not wheat-free I am aware that some benefit from going wheat-free - something to do with grains not being suitable for the gut and thereby causing a number of issues.

Off to bed now. HTH
Geoff

 

[smurph37]

Hello smurph, and welcome. I am new here myself and know very little about lada, but I am also on levo.

I dont know what your thyroid levels are but there is quite a huge range within which.we can be " normal". Most people with hypothyroidism function better when the tsh is at the very lowest end of the normal.range. this usually means at about 1.0 or below, but it all depends on the range the lab uses. Might be worth getting yours reviewed?

Hi Kentoldlady

From what I remember my last TSH was about 2. Something. How would one go about reducing that to 1.0 range?

 

[smurph37]

Hi Smurph, are you on Statins? They can cause muscle pains.

Hiya Rachox - no I'm not on statins thank goodness. My cholesterol is ok despite having family history of hereditary high cholesterol- only a matter of time lol- god I sound like a right cynic. At least I am laughing about it lol

 

[MargaretR]

Hello Smurph, I see from your original post that you have been referred to a rheumatologist. It’s very difficult not to see things from our own experience, and I’m not trying to diagnose, but I have had Polymyalgia Rheumatica, and more recently Rheumatoid Arthritis and your aches and pains are ringing bells with me. Can I suggest that you keep a diary of which parts of the body are hurting, including whether it is one sided or both sides. You might find this useful when you see the rheumatologist.

I hope you get you appointment soon.

 

[smurph37]

Hi Geoff - have written out a few posts in response to your last msg but it keeps telling me error post. Not sure what's going on. I'll keep trying

Thanks for sharing all that Geoff. I have thought exploring the NDT option - particularly as I have a corn intolerance- I can feel my body react to it. Tried to explain it to doctor who in fairness did relay that to the pharmacist who then changed the brand to something with maize in it - which I react to even more. We really do have to be our own doctors these days. Are the NDT expensive?

I ended up going back to the doctor Monday and was prescribed Gabapentin - I'm not sure if i will stay on them but will give them another few days to see. I am a bit woozy at times and knocked out. She also asked me if I'd heard of fibromyalgia- I already have a referral to a rheumatologist at least. Of course the meds have maize in them and I'm hayfeverish this morning and have tingly hot bits on my ears. I feel I've no power at all when it comes to changing my meds - seeing as I already have autoimmune issues I don't think continuing with all these items with corn/maize is going to help.

The journey continues

 

[smurph37]

Ahh that worked!! Lol. I'd been hitting reply to individual posts and then it kept coming up as error post. You learn something every day

 

[smurph37]

Hello Smurph, I see from your original post that you have been referred to a rheumatologist. It’s very difficult not to see things from our own experience, and I’m not trying to diagnose, but I have had Polymyalgia Rheumatica, and more recently Rheumatoid Arthritis and your aches and pains are ringing bells with me. Can I suggest that you keep a diary of which parts of the body are hurting, including whether it is one sided or both sides. You might find this useful when you see the rheumatologist.

I hope you get you appointment soon.

Hi MargaretR

Thank you for your suggestion of a diary - it is good to have that especially with my brain fog. If they asked me my symptoms etc I wouldn't be much good explaining in depth. I did a weeks diary a couple of weeks ago but have fallen to the waste side with it since. I must try to continue that as it's really useful. I had an X-ray for my neck a month ago as I woke up with what seemed like frozen shoulder but a week of naproxen really helped and it got back to normal so it's not a frozen shoulder. The X-ray didn't show anything.

Do you mind me asking how does polymyalgia feel/ present?

Thank you

 

[MargaretR]

Hi MargaretR

Thank you for your suggestion of a diary - it is good to have that especially with my brain fog. If they asked me my symptoms etc I wouldn't be much good explaining in depth. I did a weeks diary a couple of weeks ago but have fallen to the waste side with it since. I must try to continue that as it's really useful. I had an X-ray for my neck a month ago as I woke up with what seemed like frozen shoulder but a week of naproxen really helped and it got back to normal so it's not a frozen shoulder. The X-ray didn't show anything.

Do you mind me asking how does polymyalgia feel/ present?

Thank you

Hello Smurph

Polymyalgia symptoms are aches, pains and stiffness in muscles of the arms, legs, shoulders. When I started I thought it was the joints, but the Dr who diagnosed me moved my limbs about a lot, and I realised it was muscles, not joints. One key thing is that it is both sides, so if the right leg is hurting, so is the right. I was also very tired, and felt as if I had flu. It’s one of the autoimmune ones, and generally doesn’t occur before 50, but I have heard of a number of people who have started with it at a younger age.

You say your dr mentioned fibromyalgia. That’s another similar one, and ties in with what I said about talking from our own experience! I haven’t got that, so it wasn’t one I immediately thought of. The rheumatologist will have experience of all the ones with similar symptoms.

 

[PatsyB]

I had blood tests for polymialgia and they say it is not that so dunno what it is but wish it would go away

 

[librarising]

Are the NDT expensive?
The journey continues

Hi @smurph37, here's where I got my last lot.
https://ndtstore.ecwid.com/
Recommended source was from a thyroid forum (probably STTM).First lot c £40 for 1000 tablets. Now £50 + p & p.

Life really is a journey, ain't it
Geoff

 

[smurph37]

Thank you Geoff- that's actually quite reasonably priced. How do you know what dose to take? is that something the site would help with

 

[librarising]

Thank you Geoff- that's actually quite reasonably priced. How do you know what dose to take? is that something the site would help with

Try here :
https://stopthethyroidmadness.com/natural-thyroid-101/
and you'll find Thiroyd detailed here :
https://stopthethyroidmadness.com/armour-vs-other-brands/

I found STTM very useful on my journey.
Geoff

 

[MRSROK]

Hi @smurphyuk - I wondered the outcome of seeing the Rheumatologist? I am T1D (LADA), have psoriasis and Hashimoto's.

I am currently experiencing the EXACT same symptoms as you have described. My GP reckons I have psoriatic arthritis
I see a Rheumatologist in 2 weeks but the pain and aches are horrendous at the moment - I am taking Mobic and Tramadol. I am really worried about steroid injections as they can mess with your BS quite a bit.

Hope you are finally feeling better!

Claire

 

[BaliRob]

Hello all I just wanted to share this in the hope that someone may have had similar experiences that I can identify with and try and figure out more about my health really.

I got diagnosed as type 2 eight years ago and about 4 years ago my blood sugars started going really high (H1bc 14) for about 2 years. When I then had a severe DKA - when it was realised I was a LADA. I also had extreme work burnout at the time.

Since then I've had daily aches and pains all over and a lot of fatigue - I halved my H1bc and at present it is 60 which I know is still too high but for the Amt of muscle aches and pains I have it really feels disportioncate. Over past cpl of months it has got worse - so achy in my neck and across shoulders and done my spine. I wake up early with lower back pain. I've aches down my arms from shoulders. Pain in buttocks at times and sometimes my thighs and knees and ankles. I've had more than usual tingling and numbness in my hands and burning under my feet. It feels like I have my period all the time (not much pain but some pain in lower abdomen) when chopping veg it's hurting my wrists and I'm less and less able to carry bags with significant Amt of weight. I am only 37 and I am so afraid of the future if this is what I'm like now. I do my best to keep things in the day but I definitely feel very alone. I have been to the doctor eventually- I've a big block when it comes to my health - after many blood tests and revisits later he has referred me to a rheumatologist, which is good and at least it's the right direction I feel.
Is it possible to have this much issues from diabetes after this length of time having it and the H1bc I've had- or does it sound like something else? even on days when my blood sugars are very good I have aches all over. When I go high now though it's way worse even at 10/11. I'm highly sensitive to carbs e.g. I've to dbl my insulin for bread and so I try to stay away from it. I've so many food sensitivities and I react to lots of stuff. I try to eat lower carbs. Sorry for the long winded post. I would be sincerely grateful for any suggestions

Just a thought - are you on Statins? Many of the aches and pains you refer to were enjoyed by me (hahaha) also UNTIL I stopped taking them.

 

[PatsyB]

I too have muscle pains in my upper arms and on statins the Doctor wants to inject with steroids I said i think about it neve rrealy thought about statins being the cause but deff thinking on it now lol