Foggy's "Invisible Illness" Support

Progressive symptoms - HELP

Hi - I posted here previously but I think i'm getting a better understanding of what it is i'm experiencing so I wondered if anyone can help me.

So since January this year I've been suffering with something that the Docs can't figure out. They say it might be psychiatric which i'm happy to accept if it is but I don't know why it's progressing through my body.

So started with Calf pain and stiffness in my feet. I was asking for foot rubs and hot water bottles all the time.

Then in January after lower back issue and neck and shoulder pain I got a headache that wouldn't shift. felt like a hand on my head pressing my temples which I still have. Took tablets and carried on. Then I noticed that when walking my body was struggling, my heart felt like it was struggling and I felt a bit dizzy when walking like I was going to pass out. Started waking with a jolt really early. I felt pretty out of it at work and just tired so I took off work. When I took off I had a rest and woke up gasping for air with a throbbing dripping sensation in my skull at the back and since that point everything went down hill.

My sinuses are inflamed and almost completely blocked and nothing has worked on them. My ears are blocked and I can't pop them. I have raised, sore lumps behind them that aren't viable but I can feel them. My hearing is super sensitive. My eyes are a bit snowy in vision and have felt like they are twitching behind all the time. My eyes also water a lot, morso since I lost feeling around the eye

It feels like my body is over stimulated and movement and talking, even my eyes.

I've had progressive loss of internal sensation throughout my body. So I can feel touch but internally I can't feel much of anything. The first bits to go were my neck and shoulders, then my scalp and chest, Tummy and diaphragm and arms legs, throat, ears and forehead around eyes, cheeks. My whole body is rigid and tender to the touch esp on my back and neck and ribcage. my left side is more sensitive than the right.

My shoulders grind all the time.

When I lose sensation it's usually after i've been walking around too much or talking/ shouting or i've had a hot shower. The sensation isn't the issue. Once i've lost sensation it feels like the muscle or ligaments died and have gone rigid. my body then goes into some kind of shock my brain feels scrambled and my body quivers. It used to take days to calm down and but as i've had less and less feeling it only takes a day or so. The muscles / Tendons then feel solid and get more rigid the movement which is done. As you can imagine this is putting immense strain on my body the further along it gets. Even eating gives me a sore and inflamed Jaw afterwards.

It feels like my body is tense from head to toe and I can't undo it because as i've lost feeling I don't really have a control over those parts and i'm very weak. Sitting up

Doing things like passing stool has become hard because I don't have that ability to push through my whole body anymore. The same with carrying anything heavy or pushing pulling things i'm so weak.

As I lost feeling in my vagina it's become very mucusy down there and my mouth feels very full of saliva too.

My hearing has got worse and I do worry that eventually this will progress to my eyes and ears.

I tried to have sex and when I climaxed I lost sensation down here and it felt too much for my body. It took ages to calm down.

Lastly but very importantly is my body is very intolerant to heat and cold. Cold makes my muscles/ ligaments even more rigid and heat seems to over stimulate the body and the body cannot distribute it properly. If I use a hot water bottle on my body it only heats the bit of the body it's one and that bit goes very red and veins become bulging and the rest of my body becomes very very cold. If I raise my voice my head gets super red very quickly and i get light headed. It's like the body bits aren't talking to each other anymore to diffuse head or just run properly.

I get very hot under my ribs and neck when my body gets hot.

My skin is pale and i have lots of blemishes on my chin and back.

I have flare ups when everything is a lot more intense and all the muscles head to toe feel like they're gripping and that makes everything harder to even sit up.

I'm sorry this has gone on i'm just desperate for someone to help as the docs are stumped and i'm getting worse.

Massages and physio make things worse somehow

Chiropractor flared things up

Thyroid and Full blood count clear

Lyme disease - Had a negative and an antibodies reaction too low to be deemed positive

MRI - Brain - Clear

MRI - Spine - Disk bulges C5, C6 & L1- Disc degeneration

Rheumatoid profile - Neg

Vit B - Fine Vit D - boarderline

C reactive protein - very low levels of inflammation

ACE - Enzyme - negative

ANA - Bloods clear

ENT - Appointment in Jan

Neurology - put me on some preventative migrane tablets after I had been admitted to hospital with a thunderclap headache. Referred to psych

Rheumatology referral - 17 Week wait

Psych referral - waiting for appointment

I've already tried antidepressants which immediately flared things up to the point I had to call a mental health team out.

Does anyone recognise anything that could be wrong?

8 Replies
oldestnewest

I have no idea what you have, but I seriously doubt it is psychiatric. I've lost count of the number of times doctors have wanted me to go to a shrink simply because they don't immediately know what it is. The first time was when I was a teenager, and I got violent headaches every year on my birthday. They said I obviously had a psychological problem accepting getting older, and only a shrink could help me. When I was 19, I moved 200 miles south, to Maryland, and from then on I got the headaches a week before my birthday. Turned out, I was allergic to privet hedges, which happen to bloom on or around my birthday in New York, where I lived, but bloom a week earlier in Maryland. So don't let them relegate you to the psych ward. They need to look harder. Your symptoms don't immediately bring anything to mind, but just because it isn't something common doesn't mean it's not real. Have they looked into autoimmune diseases? Vitamin deficiencies? Allergies? Environmental toxicities? Hormonal imbalances? Pituitary function? Adrenal function? Accidental (or even deliberate) poisoning? Mercury exposure and poisoning? Lyme disease? There are so many possibilities, and they all need to be investigated. You need to get rid of those turkeys and find a doctor who is intrigued by a good mystery, and is willing to hunt for the answer rather than dismiss you as a loony.

1 like
Reply

Wow that's crazy for want of a better word. It's pretty frightening how quickly they try to give you a mental health diagnossis. My doctor said I was anxious and depressed the day I went in and I was on an anti-depressant within 2 weeks. I knew in my heart at the time it wasn't but once I'd gone along with it it took 6 months for them to try other routes and even then my situation is so strange they don't know what to do with me. You're right I need a real life Dr House to help me. I wouldn't mind how long it takes but I've had nearly a full year off of work now and my money is getting tight. I really wanna get well and back to work so we can enjoy our life. I just can't handle the stress of managing people at the moment while everything is so fragile.

Thank you for your words of encouragement I will keep fighting on.

Reply

If I was you buy yourself a support or brace 4 your back RE: degeneration RE: lumbar L/1 also buy a neck brace RE: to support C/6 & C/5 an shoulders / scapulars.

Being referred to psychiatrics is to rule out psychosomatic RE: seeking attention.

Search (with computer) what are the symptoms of low Vitamin-D and Vitamin-C.

Rigid do U mean cramps? Also age and weight with low Vitamin D and C could ad to body issues and headaches.

When medical personal know U have a problem (difficult diagnoses) and cannot find cause they call it in medical terms idiopathic ?

Hope info gives u some relief, as I have simular symptoms as in neck C/6 an C/5 and spine degeneration.

1 like
Reply

Hello!

Thank you for your help.

I've brought a neck brace but can't wear it when my neck flares as it puts too much pressure on my neck to straighten it. I think this is because my shoulders are rolled forwards and stuck there so to try and straighten my neck in a brace then pulls too hard on the neck muscles which rigid / tight. I will look into getting a lumbar brace though thank you.

As long as I get help I'll go anywhere i'm fully compliant with that as long as i'm not lumped into mental health issues for no reason. I've already tried to go along with an anxiety / depression diagnosis and had therapy and SSRIs / Betablockers I wouldn't go back on SSRIs ever again though. I appreciate they have to rule things out I just want the right diagnosis so I can get better asap. I miss going to work and being able to do things :-(

It's not cramps although I was experiencing bad cramps in my calves before all this started. All my muscles are sore when I touch them but I can't feel anything other then the tension. Every muscle in my body is sore and tight to touch it just gets worse up use or stimulation. It's like everything is taut head to toe. The muscles seem tight but I can't feel that without touching them. Because everything is so tight if I use one part of my body it tightens it further and thats when things flare up. Even taken a shower or eating makes my tummy go rigid and tighten up.

I can't lay on my left at all otherwise I get pressure and pain in my left side and my head gets very dizzy and strange. I also get tinnitus is I over use my body or turn my neck a funny way. The tinnitus has got higher and higher pitched as i've lost this sensation in my face / head muscles now it's like very distant hiss but it's still there.

My ears / eyes are so sensitive and get funny when I've been too active or talking too much its so strange I've taken to wearing ear plugs when out and about and it seems to help me stop getting light headed when i'm in busy / noisy places.

My blood pressure is quite low.

I've been supplementing vitamin D since the beginning of winter. I did get my levels checked privately and they were 76 in June not considered to be deficient but the low end of the normal range. When I got my levels checked a week ago I was at 85 which is boarderline on the NHS so my doc wants to see me to discuss the results. We'll see. I've had a look at Vit C and there are similarities.

Thanks for responding to me I appreciate anyone who is willing to advise. It's such a strange situation to be in and any advice ideas are always welcome. Thank you!

Reply

if you can get on2 cannabis oil that will help with anxiety, as their is no cure 4 nerve damage.

Reply

The tight calf muscles may be spasticity in the muscles. The fact you are getting neck and shoulder pain may account for the headaches as often linked. Your blocked sinuses may account for the balance problems. I doubt it is psychological however there is no doubt that stress often makes these illnesses worse.

I think it might help to go back to the start and ask the physio for exercises to release the tightness in the calf muscles. Pentagabin is also good for releasing tightness in other muscles and helping with headaches. I think it helps if you feel you can get any control at all over what your body is doing.

Good luck. I hope your GP manages to get to the bottom of the problem. I think this type of illness feels scarey because you feel you are losing control. My advice is to find a symptom you feel you can control and just controlling that one thing may help.

Reply

I had borderline B12 and I and I had the grindy generalised pain you have. It can also effect your hearing, eyes and nerves in general. Try taking 1mg (1000 microgram) of B12 per day and see if your symptoms improve. It may be worth taking other vitamins and mineral supplements as well if B12 does help, as low B12 and B12 deficiency symptoms are usually caused by problems digesting food. If lack of B12 is the problem then sometimes the symptoms get worse before they get better.

Some of your symptoms suggest to me it isn't B12 but is best to rule things out 1 by 1. Another thing to explore are thyroid problems as they can cause a whole host of different symptoms. Sometimes doctors say your results are clear but either they misread them or the normal variation is so wide it includes some who are having trouble.

1 like
Reply

From what you’ve said, it could be stiff person syndrome or a slightly atypical presentation of myasthenia gravis or Lambert-Eaton myasthenic syndrome. It also could be psychosomatic but that doesn’t mean you’re imagining things. It just means your brain is causing the very real problems you are having. The mind-body connection is very strong and not fully understood. Which is why things like the placebo effect exist.

Whatever it turns out to be I hope you find answers and relief from what you’re going through. I had very similar symptoms about ten years ago and ended up with a diagnosis of seronegative myasthenia gravis. I know it can be frightfully scary to lose control over your body. But over the past few years I’ve made a lot of changes and been able to accept the things I couldn’t change, and life is so much better now than it was then. Both in terms of external stresses and my physical and mental health. I still have days where I have flare ups but they’re becoming rarer all the time as I take the time to check in with myself more and more.

Reply

You may also like...