Advice,help and thoughts please as feeling increasingly desperate! :'(

[tigerlily72]

This may be a long post but I think it's only fair to give anyone who's kind enough to read and comment, the background and a bit about me. Ok, here goes:

Female, mid 40's, diagnosed with Type 2 Diabetes two years ago - no meds and diet controlled from diagnosis. I have hypertension (high blood pressure) and have been on a few meds for this - currently on Felodipine and Indapamide which is a diuretic. I've suffered on off over the last 2-3 decades with depression as well as stress related symptoms and anxiety (some exacerbated by life events). Although I also take Amitriptyline this is for pain relief at night and I've not been on any medication (specifically for depression) for about a year or more.

About a year ago I had a burning, tingling sensation just below my knee and part way down the front of one of my legs. My Dr suspected nerve related pain and prescribed gabapentin. Due to discomfort and pain, the dose steadily increased over a period of many weeks. In December last year I slipped whilst out in the garden - I was shocked and bruised but nothing felt broken so never got checked. I did hit the ground hard and hurt my head and neck a bit as my legs literally went from under me.

January - I had suspected chicken pox / viral infection. And from there I have just gone downhill with little respite (other than from around mid May to July) - I've been feeling very cold when the room temperature and other people are fine. Ironically, I was often the one that was hot although it may not have been that hot!!! This ended in me becoming severely fatigued, suffering with insomnia and having periods where I would then sleep for hours, cold clammy sweats, legs being cold and stinging and stinging with coldness. I got signed off work for a short period in the Spring due to this.

Several blood tests were done to check for those "testable" conditions i.e. thyroid, anaemia, iron levels, full blood count, etc - all normal or satisfactory. GP then referred me to neurology - it took 5 months for an actual appointment and to be seen.

My neurologist's very confident that it's not neuropathy / diabetic neuropathy. She ordered a blood test to check inflammation markers - for lupus and rheumatoid arthritis - all were normal. I've also been referred for an MRI which is in September and she doesn't think any abnormal will show up. I guess this is just an elimination process. I have a copy of the letter she's sent to my GP and I'm rather "hyporeflexic" and the MRI is to check for "CNS inflammation".

In the meantime I'm experiencing really chronic pain again - from the top of my legs to my ankle almost - a freezing cold sensation and my legs sting with coldness. My feet and hands are not cold. The skin is cool to the touch and it feels like liquid ice is in them under the skin, or that feeling you get when it's minus temperatures and your skin tingles with the cold and pain. I'm very stiff and achy - at the moment my neck and shoulders and upper back is the worst. I also get these cold patches on the back of my neck and shoulder area now. I have a stiff left arm, especially where the elbow joint is. I can't sleep and am awake until 3 or 4am. I just sit and sob most days and am off work, signed off again.

I'm not on gabapentin anymore as the dose kept going up and was eventually ineffective. I stopped it around April time on the advice of my GP who suggested seeing if I could manage without it, as it didn't seem to be helping anyway. I recently started on pregabalin which has very quickly been increased from 50mg twice daily to 100mg three times a day.

My own GP mentioned the possibility I have CFS and Fibromyalgia several months ago (pending my neurology referral). The GP I saw about a week ago also mentioned CFS.

I've realised just how long this post is so I'll stop now. All thoughts most gratefully received. x

[Chaserwaser]

Hello, I'm a 34yr old woman and unfortunately have many of the same symptoms that your experiencing. However I'm not diabetic and never was. I have Grave's disease. I had Thyroid cancer and 7 cancerous nodules 4yrs ago. I had my Thyroid and the nodules removed. I have ulcerative colitis, 4 stomach ulcers, chronic acute Pancreatitis, RLS, PID, migraines and most recently I was diagnosed with Wilson's Disease plus a few other med diseases/health problems. A lil over 2yrs ago I woke up one morning and had a hard time walking. The feeling I had I n my calves was what I can only explain as electric shocks...what I'd expect being electrocuted would feel like. My legs were always cold. Sometimes I had a feeling of pins and needles also in my calves. The feeling got progressively worse and it became harder and harder to walk. The pain, tingling, cold sensation, electrical feeling and etc became worse and had traveled further up, higher and higher into my thighs. I then had to start using a cane then a walker to get around. My husband is a RN and he sincerely thought I had peripheral neuropathy so I asked my PCP to send me for a nerve conduction test cuz I was too young and not a diabetic. He prescribed me gabapentin anyway but it didn't help. I recently moved and had to find all new docs and specialists and my neurologist is sending me for the nerve conduction test. He prescribed me Lyrica and about 30-40mins after taking my first dose of Lyrica I was almost able to walk normally without assistance and barely any pain, tingling and ect. I've been on the Lyrica for a few wks. now and almost all my symptoms are better if not gone. However I'm still always cold. A lot of the symptoms was due to my Thyroid diseases and possibly neuropathy. Are you sure your Thyroid levels are normal? I'm in the process now of being tested for other autoimmune diseases like Lupus, Fibromyalgia, MS and others. Good luck to you and I pray you can find an answer soon! I understand how frustrating it is to be "sick" and not knowing why or what's causing you to feel the way you do.

[Marz in reply to Chaserwaser]

Are you sure you are optimally treated for your thyroid ? do you have any recent results you could share - with ranges ? See my reply to tigerlily below

[tigerlily72 in reply to Chaserwaser]

Thanks for reading and replying Chaserwaser. You've obviously been through a lot yourself, and are still battling medical and health issues 😢

Regarding thyroid tests - I think it was just a standard test and the TSH. They didn't do the T3 and T4 I've heard so many people refer to. It's not something they routinely do on the NHS in the UK, I believe. I think they only do them if the standard test throws up really abnormal results?

The tingling and freezing cold pain is one of the worst symptoms and I've been googling yet again, trying to find answers, as the medical profession seem baffled!

I came across something earlier today called CPS (Central Pain Syndrome) which sounds exactly like what I could have as the majority of the symptoms fit and so do the triggers that make it worse. I'll try and pop back and post a link.

The other possible cause may be an issue with blood vessels, but hey, what do I know?!!

I hope you don't have lupus, fibromyalgia or MS. It's a bit scary isn't it?

By the way, are you in the UK? Look after yourself (as best you can) and let me / us know how you get on. xx

[tigerlily72 in reply to tigerlily72]

This is the link and info about CPS

healthline.com/health/pain-...

[Chaserwaser]

I apologize for the long post

[Judmilla]

I'm just curious; on what basis did your neurologist decide you do NOT have diabetic neuropathy? Usually, they are very quick to blame anything on diabetes. My neurologist seems to think my symptoms are diabetic neuropathy, even though they began 10 to 15 years before there was even a hint of diabetes. For your neurologist to say it is not the diabetes, when diabetes is in the picture, is unusual. I agree though, it doesn't sound like diabetic neuropathy. I hope you get some answers soon. Keep us posted.

[tigerlily72 in reply to Judmilla]

Hi Judmilla

She told me it definitely wasn't diabetic neuropathy as my GP had told them my diabetes was well controlled. I'm guessing this was in my medical notes, along with my HBA1c readings which I think the last three were 44, 44 and 42.

It was also from her physical examination and also observations and as she reiterated this a few times I'm guessing she was pretty sure. She seemed to know her stuff and although some of the tests were uncomfortable i.e. she manipulated body parts and I had to do things like push her hand away from me or resist if she pushed down on my feet etc, I felt like I was getting somewhere. Although, still no definitive answer!

[Marz]

Thinking with my Thyroid head - I would suggest you obtain the test results and ranges for the Thyroid Testing that was done. Often the TSH is the only test that is done - which tells you so very little as it is a Pituitary hormone and not a Thyroid one. The other testes needed are FT4 and FT3 and the Thyroid anti-bodies TPO & Tg. All these tests are rarely done by the GP. The anti-body tests are important as you need to rule out Hashimotos - auto-immune thyroiditis.

When Hypo ( I have Hashimotos ) - we also have problems with absorbing nutrients and the following also need testing - B12 - Folate - Ferritin - VitD. They need to be optimal and not bumping along the bottom of the range - which GP's find acceptable for some reason.

You are legally entitled to have copies of all test results - that way you can see what has been missed and where your levels really are. You can then monitor your own health.

A B12 result under 500 can present with neurological symptoms and needs immediate treatment.

thyroiduk.org

Look at the Signs and Symptoms of Hypothyroidism in the above link and see how many you have. Happy to answer questions. Click onto my name above to read my journey - only a couple of minutes

CFS is a syndrome - so lots of causes. Low B12 ? - Low vitD ?- Low Iron ? - Low Thyroid ? Once that diagnosis is on your notes there will be no need for any further investigations. On the link above you can also click onto - About Testing - Private testing with Home Testing Kits - well used by the members on Thyroid UK her on HU. If your GP will not do all the tests needed

[tigerlily72 in reply to Marz]

It was only the TSH that I had done, which was a few months ago now. I've just checked one of my old posts (in the thyroid forum) and my Serum TSH was 4.38 (range 0.3 to 5.0)

Serum ferritin level was 50ng/ml with a range of 15.0 to 350.0 which seems a huge range to me!!!!!

I don't know whether to ask for additional tests or re-testing as my own GP is pretty good and does listen.

[Marz in reply to tigerlily72]

If your GP is good then the following tests should be done - TSH - FT4 - FT3 and Thyroid Anti-bodies TPO & Tg. Having been on the Thyroid Forum for six years I have rarely seen the FULL Profile done. Auto-immune Thyroiditis is the most common thyroid issue in the world - so without testing the anti-bodies how would your GP know. Sadly Docs do not understand auto immune issues - and are not trained in nutrition.

You also need the B12 - Folate - Ferritin - VitD tested - and they need to be optimal and not bumping along the bottom of the range.

If you can afford to have the private Testing done I would go for that and re-assure yourself .

thyroiduk.org.uk/tuk/testin...

Look out for Special Offers.

b12deficiency.info/signs-an...

Scroll down in the above link to view the signs and symptoms of Low B12 - the neurological ones come first ...

I know it is difficult to get correct thyroid testing done - meanwhile thousands and thousands of people are suffering. There are over 300 symptoms linked to low thyroid - and blood pressure is certainly one. Are you taking magnesium ?

healthunlocked.com/search/b...

The above link contains almost 6000 posts on blood pressure on Thyroid UK alone !

[Judmilla]

To Tigerlilly72: Your neurologist must be wiser than mine. I took documentation of normal blood sugars from 1989 to 1995. (They didn't do hemoglobin A1Cs back then.) I took documentation that the neuropathy was well established in 1994. I took documentation that the diabetes came on pretty suddenly in 2003, one year after starting Lipitor for my cholesterol. (There is evidence that Lipitor can cause diabetes.) I took documentation that it was in excellent control once I got off the Lipitor, and has stayed in good control ever since. Still, she insists that the diabetes is probably the cause of the neuropathy. She says the neuropathy can precede the diagnosis, and that an A1C just a slight bit above the "normal" range isn't good enough. I think she's just got an axe to grind, and that it isn't related to the diabetes at all. I have NO retinal damage, NO renal damage, NO cardiac problems and NO circulatory problems.

To Marz: You are right that B12 levels below 500 can result in neurological problems, and the official "deficiency level" in Europe is 500, (550 in Asia), but in the U.S., the official deficiency is 200, and Medicare will not pay for B12 shots if one's level is above 200. My GP did order the shots, but I had to buy the stuff out-of-pocket, and my husband administered the shots for a year. But then I switched to the sub-lingual tabslets and they are actually keeping my levels up better than the monthly shots did. I only have to forget 3 or 4 tablets a month before I start getting ocular migraines again, so it's somewhat touch and go.

[badger4218]

If you haven,t already have a look online into ALA, Alpha Lipotic acid. I was on gabapentin ( terrible drug developed for epilepsy ) then changed to the one they have you on now, which is exactly the same family just a different branch and just as bad. Discovered ALA and have never looked back. Good among many things for neuropathic pain and diabetic neuropathic especially. You Tube vids also. xx

[tigerlily72 in reply to badger4218]

I've ordered some Hemp seed (Cannabis sativa) oil capsules which also have omega 3 & 6 I think via Amazon. I'm not sure but they may have ALA? They should arrive by the end of the week along with the Epsom salts. They have quite good reviews so I thought I'd give them a go. After all, I've nothing to lose!

Thanks for the info and advice 😀

[tigerlily72 in reply to tigerlily72]

Just checked and they have linoleic acid, alpha linoleic acid and gamma linolenic acid. Made by Lindens.

[badger4218 in reply to tigerlily72]

I think you will find they are two different compounds though I,m no expert. Alpha Lipotic Acid heals damaged nerves, certainly has sorted mine out!.. Best wishes. x \

[Judmilla]

She had me on Cymbalta for the peripheral neuropathy, but it did absolutely nothing beneficial, and produced a profound depression. I got off that, and felt better again. Then she suggested alpha lipoic acid, and that seemed to help a little, but only a little. It's side effect was mild nausea, but that was tolerable. But then the cardiologist put me on Florinef for the dysautonomia, and that's when things came apart. The two together produced INTENSE nausea and violent vomiting, so that the medicine came up again and was wasted anyway. So now, I've stopped the ALA for the time being. I'll give the Florinef a chance, and then see if I can gradually reintroduce the ALA. Pain in my feet is preferable to fainting, and maybe hitting my head on concrete or something. Oh, and by the way, alpha lipoic acid has nothing to do with alpha linoleic acid or the others Tigerlily mentioned. Those are omega 3 oils, ALA is different, although I'm not sure exactly what that difference is. I will look it up sometime.

[tigerlily72 in reply to Judmilla]

OMG! It's an absolute merry-go-round and trial and error to see what works and what doesn't. I'm going to look up alpha LIPOIC acid and find out a bit more.

I had a really bad night, awake until gone 4am and cold (facial) sweats although I wasn't hot or overheating. The back of my neck and shoulders were quite cold and the skin felt cold to touch. Managed to drop off to sleep eventually but it was on and off until around 1pm. It's so draining 😞

[Judmilla]

I've been reading up on ALA. It seems that the cheap stuff you can buy in Walmart is not the best form of it. The Walmart version is a synthetic that contains a 50-50 mix of R-ALA, the naturally occurring biological molecule, and S-ALA, which is a mirror image and does not occur in nature. This is much like the situation with biological fats vs trans-fats. Biological molecules generally have beneficial activity, while their mirror images may be less active, inactive, or even harmful. In the case of ALA, I can't find anything that says S-ALA is outright harmful, but it is definitely less effective, perhaps completely ineffective. Pure R-ALA however, is highly unstable, and is likely to spoil before you can even obtain it. It needs to be stabilized first. So.... The best product seems to be "stabilized R-ALA", but of course, it is much more expensive than synthetic ALA. What I haven't found out yet, is whether the side effects of stabilized R-ALA are better, worse, or unchanged from the synthetic. I might invest in some, and see for myself.