Does anybody else suffer chronic bone pain during the night ?

[Jillymo]

Despite my many autoimmune conditions nobody has thought to check my pitituitary gland. I cant help wonder if I have low cortisol levels or something like addisons's disease. I do have an endocrinologist who I shall be seeing at the end of this month and will request to be screened. Although my endocrinologist is very pleasant he seems to do as little as possible to rule other ailments out - nothing new there ! ! !

[cocoa]

I had bone pain and was found to have osteopenia. This was found out because my GP requested a dexa scan because my balance is poor. I now supplement vitamin D regularly.

[Jillymo in reply to cocoa]

I am prescribed Vit D3 due to my having hypoparathyroidism. My dexa scan was slighty lower than last years but nothing to worry about I were told. My balance is so bad I can no longer go out unless assisted.

I am seeing my endo at the end of the month who will test my vit d levels - 🤞 Everything has got so laxed that they now do very little if they can get away with it. 😤

[Scott-rock in reply to Jillymo]

if you have hypoparathyroidism you need calcium supplements. What are your PTH and calcium levels? I had hyperparathyroidism and needed surgery. I had bone pain from that. Which went after surgery.

[Jillymo in reply to Scott-rock]

Mine is a rare genetic form of hypoparathyroidism for which I am prescribed cacitriol. Wont know what my levels are until bloods are done next week after I have seen the endo.

I am wondering if I have an absorbtion problem and waiting for results of gastric biopsies but everything is so long winded these days.

I was just wondering if they removed some of your glands and had they have inplanted them in me would it have solved my problem. 🤔

Glad to hear your pain has resolved.

[Scott-rock]

woukd be good if that worked!

I’m sure all my issues are linked to the b12, everything I gave has calcium and bone marrow links.

[Jillymo in reply to Scott-rock]

How did they test your bone marrow ? This is something that I were wondering about.

[Scott-rock]

my bone marrow has not been tested, my autoimmune condition is caused by the marrow producing to much of one antibody protein. I’ve had various bloods taken now looking at my immune system, recently just waiting on the results. From the haematologist.

I’ve had two endocrinologists now, the second one is fairly good. But my neurologist has been fantastic, he knew what to look for by my symptoms. Did lots of arthritis type tests . And found I had MGUS on top of my PA and low testosterone hypogonadism. Capped off with the spinal disease.

I joke now that the only thing not scanned is my toes and feet!

[Jillymo in reply to Scott-rock]

I also have various autoimmune conditions but not able to find a consultant to take interest in investigating - albeit my son and I were considered to be unique when diagnosed with the hypopara and of great interest which wore off after a few years. 🤔

My heamatologist is only interested in anticoagulation and has no interest in my B12 issues. The neurologist I saw was a swine of a man who tried to label me with functional neurological disorder ! He totally ignored my many diagnosed conditions - which included like youself spinal degeneration and my diagnosed Aps ( sticky clotting blood. )

I also read you have had a hernia repair - I have a sliding hiatus hernia. I had a gastroscopy last month which didn't look very promising so I put the pics on here. They did biopsies but i'm waiting results. My gp and heamo have both chased up the results but as yet nothing in the way of a diagnosis.

I am now getting a little fed up to say the least.

[Dilly_blue in reply to Jillymo]

Hi Jillymo, you mentioned that it was genetic, have you been tested for variants in the AIRE gene on chromosome 21? It is an autoimmune regulator gene, and can be associated with many autoimmune conditions, including hypoparathyroidism and PA. If someone has two faulty copies of the gene then it is associated with Autoimmune polyendocrine syndrome (hypoparathyroidism is one of the defining characteristics of this); although cases of APS ( / APECED) have been known with just one faulty copy of the gene. If you have not been tested for the gene it is worth asking your endocrinologist to test for it, as that would hopefully then pull all of your diagnoses together, and would help them take all of your symptoms more seriously (including possible autoimmune B12 ones). Good luck..

[Jillymo in reply to Dilly_blue]

Hello Dilly_blue,

If I remember correct you mentioned the aire gene to me in a previous message. I requested for my endo to look into this for me but as yet still waiting for him to act - nothing new there. I am seeing him on the 20th of this month and will put if to him again.

Can the testing be carried out as a routine blood test or is it specialised ? Maybe I should email my endo with some info before I see him.

[Scott-rock]

it can be very frustrating trying to get answers. I recently found out that my previous Gp was told to keep investigating for other reasons after my parathyroidectomy by the surgeon. I actually saw her again for my hernia surgery and she was pleased we had found more , ironically she also said my hernia wasn’t causing all my hip/lower back problems. Two months after surgery we find the spine issues.

[Jillymo]

It is not always who we are seen by but how we are perceived. When I were first diagnosed with the hypopara issue little was known about the condition. Due to lack of treatment I went on to suffer a scoliosis of my spine which has now degenerated.

It has taken many years to get diagnosis but due to the complexity of my conditions I am in need of specialised consultants within the field of autoimmune conditions. I am no longer able to travel to London because of a decline in health and now hoping to find someone in Oxford. 🤞

It is surprising what is found by chance. I suffered heart failure but during all the scanning they found I had a polyp in my lung, two cysts on my kidneys and 5 haemanangiomas on my spine ! Oh joy

Nice talking to you hope you make good progress with regard results and your treatment. Anything new pops up keep us informed.

[EiCa in reply to Jillymo]

Hi Jillymo,

So sorry to hear of all your problems. I have pretty severe spinal disease. It is now so bad I am nearly bed-ridden. I also have osteoporosis (bad) and arthritis. What caught my attention in your post was the hemangiomas. I have twelve of them in my thoracic and lumbar spine. One of them is pre-cancerous and the other one displaces so much bone in my L2 vertebrae that no bone is visualized in it. Any docs I have seen for the incapacitating pain in my spine (and now hips) dismiss the hemangiomas as asymptomatic. I don’t think mine are. In fact I have chronic and sometimes dramatic pain in the area of the largest hemangiomas. Do any of your docs give these any attention? The only attention I get is monitoring of the pre-cancerous one. Otherwise my pain is totally dismissed. I have a hard time not believing that where there are blood vessels instead of bone, there might be problems. I feel your pain. So sorry you struggle with so many things I get it

Eileen

[Jillymo in reply to EiCa]

Hi Eileen,

The first hemangiomas appeared in my teens on my back. Later on in life I could feel the tecture of it had changed so mentioned it to my Dr. I was sent to a skin specialist and it were removed in day surgery. It was purely by accident the one's around my lower spine were found.

I degenerative scoliosis, osteoarthritis and chronic loss of disc space. Like yourself I am now getting pain in my hip especially when standing on the spot for short periods ie like when washing up. Considering I have a serious calcium problem my bone density wasn't too bad.

I thought perhaps the heamangiomas were due to my sticky blood condition (Aps) but maybe I am wrong. Since them being diagnosed they have not be refered to since ! Mine are around L1 2 3 4 and 5 all lower spine. They seem to love using the word asymptomatic but it is not them suffering the pain. I am now housebound due to not being able to walk far and my balance is now very poor and I easily fall over. My legs are very numb and the pain in my feet can be excruciating. All I am given for thepain is pain patches that do nothing in the way of relief - I even tried the CBD oil but that didn't help either.

I find it strange that the one on my back was removed ( to be on the safe side ) I were told yet the ones around my spine are ignored. I can feel your frustration and pain because I feel exactly the same - especially when I were sent to a swine of a neurologist who dismissed all my diagnosed conditions and scoliosis and labelled me with functional neurological disorder ! ! ! It seerms to be anything to get rid of us these days. I do hope you get some help and somebody listens to you nobody knows better than the patient if only they listened.

Thanks for contacting me. 😘 💐

[B12life]

what was your b12 level before you started injections and how long have you been doing injections?

How frequent?

I had bone pain when I started my daily/eod injections for nearly 2 months while everything was healing but if your doing frequent injections and are way past 6 months of injections then, perhaps it's something else.

With the para thyroid issue are they constantly checking your calcium levels?

Hope they figure it out. Tell your endocrinologist how I bearable it is and that it's hindering your job/life. I used to just give symptoms, but this helps put it in perspective for them.

Wishing you the best of luck in finding the answer.

[Jillymo]

I cant remember off hand what my levels where ( heads shot ) but have been injecting for two and a half years and now having to do daily to keep symptoms at bay.

It is not a case of figuring things out I have been diagnosed with various autoimmune conditions for many years. It is more finding somebody with interest in such a complicated medical history and tieing everything together.

They dont constantly check anything these days and what was once 6 monthly appts has now gone to annual !

This is proving to be a dificult task. 🤔

[EiCa]

None of the treatment options are very good for hemangiomas which is why, I think, the Ortho guys ignore them. I actually wouldn’t want any of the current treatments but I would like acknowledgment that I deal full time with chronic and debilitating pain. I don’t know what is in your pain patches but in the US they are so paranoid about opioids they give nothing helpful for this pain. Heat , ice and very little physical activity (vertical position loads my discs) is all I can do. It is just so hard to be told that 12 hemangiomas, some of them very large are having no effect on me. Interestingly I haven’t lost any height yet and I have had these for years. The 7 in my upper spine limit my ability to do so many things….I may have to pursue this and see if treatment options have progressed. I am so tired of pain controlling my life; day and night now.

[Jillymo in reply to EiCa]

I can imagine how difficult it must be having to deal with pain day in day out. The only option for the heamangiomas that I was aware of was surgery which is not an option I would pursue - I am no hero. Mine being lower spine make it painfall and very uncomfortable too sit for any length of time. The osteoarthritis hasn't made things any easier. I am not good with pain medication because many of them cause drowsiness and I find it dificult to function as it is. The B12 issue and neuropathy was the iceing on the cake and made life unbearable - hence taking matters into my own hands and self injecting. I still have some way to go but better than what I were and have gained a little more ability to function throughout my day.

Scans of my neck showed basically bone on bone and I now have a diagnosis of Lhermitts Sign which means I get strange sensations if I bend my head toward my chest sweeping down my legs! It's just another string to add to my bow. It's not something I had heard of until recently diagnosed.

Investigation with regard to my gastro issues is still ongoing. I have a sliding hiatus hernia together with diverticulitis and IBS. I was going to be tested for sibo but suffed heart failure and it were cancelled. Since injecting even the swelling and bloating has calmed down. To try and get test results of biopsies which were taken is taking weeks even after persueing them ! I am also diagnosed with fibromyalgia and at present trying to get genetic testing to try and link my conditions together so that it makes my care a little easier. I am seeing my endocrinologist next week and have emailed him in advance tn the hope he will look into it.

I found this on the net ( not very informative ) but it made me wonder why they have never looked at nerve damage - aurorahealthcare.org/servic...

I would also have thought what with my diagnosis of Aps ( sticky clotting blood ) they would have investigated further. I think if I were you I would persue further into investigation and options as it is blighting your life.

I have little faith in the medical profession anymore which has hindered more than it has cured.

[EiCa in reply to Jillymo]

Hi Jillymo,

I read the link you sent. Yeah, those are pretty much the options though no doctors has offered them to me. I am not interested in radiation. I have 12 hemangiomas. Too much radiation likely to cause other problems. I obviously can’t have all my discs removed! I was told once I would need a metal rod for my spine. Embolization MIGHT help but come with no guarantees. Frankly the options are lousy. These things are not that uncommon but no research has been done in decades to treat symptomatic lesions so I just live with it. The pre-can erode one is scanned every 1-2 years. I think that’s all they care about. They don’t want to miss a cancer diagnosis and get blamed. My pain is of no consequence to them.

Yes, sitting is very painful. I recline on a “wedge pillow” which takes some pressure off my lumbar area. Lying flat helps but the osteoarthritis in my hips makes lying on my side impossible at times. I have to do everything in fits and starts and unload my spine off and on all day usually lying on ice. This has been how I have coped for 2 decades. It is a very self-limiting life. I seldom go anywhere because if the pain gets too bad I need to be able to “unload” and being out and about does not lend itself to that. Again, I just do the best I can with it. I stopped looking for a fix years ago.

Hope your endoscopy results come soon. We have patient portals here. I can usually access test results in a day or less. It helps with the anxiety of waiting.

Take care,

Eileen