What Do I Say to the GP? I'm Very Fed Up

[Chezombie]

I'm currently having a really hard time with Tinnitus, as all my other symptoms have flared really badly for some unknown reason. All the symptoms have shot off the scale, the muscle spasms/fasciculations, joint pain (my hands have seized up, I can't even lift my dog's water dish), fluttering heart sensation (feels like a butterfly is trapped in my chest), 'air hunger' that feels like I'm suffocating 24/7 (comes on really badly when all the muscles in my chest go into spasm. I was diagnosed with Asthma as a child and this causes me to need much more Ventolin), pain all over my body, extreme tiredness, I'm in bed about 20 hours a day, I only get up because I HAVE to, I have to walk my dog, if I didn't it would not be fair on her, she's a big whopper of a dog, and has probably stopped me giving up completely. The vibrating sensation inside my body (like an internal tremor that nobody else can feel), is so bad now that whatever I'm sitting on feels like it's being violently shaken.

I cannot mask the Tinnitus or distract myself from it at all, it's a constant, multi-toned, high pitched hiss that never, ever stops. The vibrating in my body is like a slowly pulsating wave, and the Tinnitus seems to flow with it. I am 100% sure if the tremor went away, so would the Tinnitus.

Every time I go out, mainly to walk her, I come back with tinnitus so loud even yours on a bad day would have some competition.

I want to go back to the GP, I have to anyway for yet another 'review' aka lecture about my use of my Ventolin inhaler to relieve the constant tightness in my chest. I've been told it's not Asthma, but the Ventolin at least gives me a few good breaths a day, and I am unable to take my preventer steroid inhaler as it causes all the symptoms, including Tinnitus to go off the scale. A steroid eczema cream I put on my hands caused two weeks of symptoms so bad my legs stopped moving properly and I kept falling over, the same thing happens if I use the preventer inhaler.

I do not know what to say though, they do not understand how I can have such a bad reaction to steroids, they're constantly hounding me over the ventolin and being funny about prescribing it as if it were some kind of dangerous or addictive drug. My husband is on Co Codamol and Tramadol for his Cauda Equina and hardly ever gets asked to come in for a review, yet they constantly ask me every other month to waste time talking about the Ventolin I've been on for years.

How would one go about trying to explain all this to a GP?. They just look at me gone out when I tell them what happens when I use anything with even a trace of a steroid in.

I've thought about printing something like this off:

https://www.healthline.com/health/internal-vibrations#overview1

As along with the Tinnitus, this is one of the most torturous things I have ever endured.

I also have issues with eyesight (no night vision, blurred vision etc, negative eye test) issues with smell, such as phantom smells of burning and many others, burning mouth, ear pain, all sorts.

The problem I am getting with GPs is that rather than refer me to Neurology for a complete evaluation, they cherry pick symptoms, like the breathing, and want me to wait months on end for 'non urgent' appointments. when I tell them the breathing for example feels like it comes on worse when all my chest muscles seize up, they just say 'well a neurologist wouldn't be interested in that' so just pass me on for tests that show nothing up.

How do they know what another consultant would be interested in and what they would not?. The severe reaction I have to inhaled/topical steroids needs investigating, I'm sure someone would be 'interested' in why that is.

I cannot talk openly about how much I cry, about how very fed up I am with all this, about how much I don't sleep because it feels like my bed is shaking violently, sharp jerking of my spine, my body locking into bizarre positions, excruciating pain all over etc), about how this is effecting me, because I have a checkered background of drug abuse (sleep and pain issues just get dismissed with 'well it's not like we can prescribe anything to help with that') and if I were to tell them about the psychological toll and distress all these symptoms have caused, I'd just land up back in the mental health system, the same system that refuses to acknowledge my Asperger's and face even more long waits. Once they take that route, there's NO chance of anyone taking me seriously.

Our GPs won't make multiple referrals, so if I did mention this aspect, I'd be forced to wait months for 'talking therapy' which does not help me in the least, and still no investigation into the symptoms that are making me feel this way.

It's been suggested to me by PALS, 111 and NHS England to change GP surgery because of their attitude towards prescribing more Ventolin in the wake of the fact I cannot use steroid preventers.

That's not the only issue, the other issue is all the farting around they're doing, refusing to believe me when I tell them half of this.

I do not understand how a 31 year old with a tremor inside their body is 'non urgent' when it could possibly be linked to something very serious like Parkinson's or MND. I could tick 99% of the boxes for both of those.

I just wish I was much older and could look forward to the fact I only had a few more years left, not as many as I could have if this doesn't lead to something sinister. I cannot see myself being able to live with this long term.

Just so everyone knows, I feel the advice/support I've got on this forum has been better than from anywhere else

 

[Red]

Talking to doctors is so hard. I am surprised that your doctor doesn't want to explore why you have these symptoms. With doctors, I definitely think it is a matter of taking notes and preparing the right questions but your doctor sounds just straight up incompetent. I don't know what kind of health system you use or how it works. Is there any way you can get a different doctor? If you are kind of stuck, maybe it would be a good idea to emphasize how much you're going through. Tell your doctor that approaching it from a mental angle doesn't help you. Note the amount of time you've had to wait while your problems don't get any better. And lastly, straight up tell the doctor what you want and why. (That neurology referral)

Don't know if any of this helps. Keep us updated.

 

[glynis]

@Chezombie,
I would talk with your doctor about how you feel and maybe try a antihistamine and maybe talk about anxiety treatment...
Maybe ask about a preventer inhaler or refural for lung function tests..
Good luck at the doctors.
Love glynis

 

[Chezombie]

I managed to convince them to refer me to Neurology, which is finally happening.

I can't ask for treatments for anxiety because I just get told 'no medications, you're too much of a risk' (referring to my past childish behavior with some substances, despite the fact I have not abused any drug in well over a year now, and have significantly grown up since then) and put on a year long waiting list for group 'therapy' sessions which simply are of no use to me because I find it hard to get along with groups of people.

As for the inhalers, I absolutely cannot use anything with any steroids in, this includes preventer inhalers. If I do, the tinnitus gets so loud I am practically deaf in my right ear as it cancels out everything else (it's getting to this point now all the time though) and all my muscles go crazy, seize up and twitch, my face 'droops', my blood pressure skyrockets and my nerves feel as if they're on fire. GPs tell me steroids are meant to suppress immune reactions, not cause them.

My most concerning symptom is the tremor though, nobody else can see it, it's inside my body. Sometimes, suddenly and out of the blue, it'll feel like the earth is being violently shaken underneath me, this is happening more and more often now.

If I look it up, the first thing that comes up, and I tick all the boxes for, is Parkinson's disease. I know it'd be incredibly rare for someone in their 30s to develop Parkinson's disease, but it wouldn't be unheard of. It's all in our family, close family too, MS is as well.

I really don't know what else to do, if this is progressive, I'm only bothered about the impact it will have on everyone else, I couldn't care less about me. Whatever it is, it caused the tinnitus, and if it stopped and disappeared, then so would that.

 

[dingaling]

Sounds like you suffer from panic attacks as well? Are you diabetic as this can cause burning and tingling?

Prepare for your neuro appointment, write down everything you want to say, but keep it short as outpatient clinics are busy and you might only get say, 15min slot with the consultant.

If you are nervous, could you take a friend for support?

 

[Chezombie]

I finally got my letter r.e booking the appointment and of course, very long wait, February 2nd next year.

I don't have Diabetes or anything diagnosed (I wish I did, as there are proven treatments and ways to manage that). I got tested for it due to my constant excessive thirst (one of the many symptoms I now have) but my fasting blood sugar was normal.

My granddad passed away from Parkinson's disease, and every time I research these symptoms, specially ones like the fatigue and tremor, that is the first thing that comes up. This horrible 'internal' tremor that nobody can see or feel has been reported by some as an early symptom of Parkinson's. The 24/7 internal tremor and tinnitus combined mean I do not sleep very much at all. The muscle issues I have are so bad now that my legs are seizing up every night and the pain from it causes me to wake up screaming and in tears. i don't walk, I 'shuffle' and my muscles all feel like beef jerky, like I'm turning to stone.

My skin (concentrated in my groin area) is burning constantly.

I have managed very bad pain before without screaming and crying out but I start doing it before I wake up (usually about one hour into sleep as the other symptoms also wake me up), so how am I supposed to control a response to pain that begins while I am asleep?. I wish I could as it's disturbed the kids next door, I feel awful as I often hear them crying not long after. I am lucky if I get two hours sleep a night, I've been existing on this for about two months now. I cannot report this to the GPs as I just get told to go away and stop asking for medication they will not give me (I have NEVER asked for pain or sleeping medication, it's an assumption they make due to my past issue with Codeine and legal high benzos etc, things I no longer do or wish to do).

If there's one thing I know about doctors, it's they don't, EVER, forgive past mistakes or become willing to see past them. It's not ok for someone with a back condition like my husband to spend their lives in constant pain and exhaustion, but if you make a juvenile mistake of becoming remotely 'addicted' to a substance like I did then that is a cross you will carry forever, nobody will ever care how much something hurts, that's acceptable for you, you can't be trusted, you're scum, go away and get over it. It's so bad now that every time I manage to get to sleep, I ask for any deity or demon or whatever, good or evil, please take me in my sleep, I do not want to wake up. I am not even religious (or crazy lol), but this is the point I am at now. I don't feel as if an earthquake is ripping through my body when I am asleep, so that would be ok by me.

The Tinnitus I have now feels as if needles of sound are piercing my skull from both ears, I don't care what any tests show, I cannot hear much out of my right ear at all. If i relied on my hearing to cross roads, I'd be dead by now, not that I'm saying that would be a bad thing, tbh it wouldn't. I've had a good life so far, once your health fails, living becomes one big, long fail.

Oh and my eyesight is also getting worse too, despite a clear eye exam, my vision is blurred, foggy and full of 'floaters'.

If only my body would stop vibrating inside, or if it suddenly caused me to shake visibly so I could rush off to the doctors and say 'here, look at this! I have had enough of this, I have no quality of life because of this' then my day would be made. That's not happening though, but it's like a pickaxe, destroying me chip by chip, hour by hour, it's like death by a thousand cuts, only even that would be preferable as sooner or later, the death bit would happen.

Every time I get any moments on my own I cry now, sometimes from the physical pain, often just because I don't think I can carry on living like this anymore. If this is something like Parkinson's or MS, there is NO way I will let myself become a drain on others, absolutely no way at all.

I've done EVERYTHING to help myself, lost weight, don't smoke, don't use drugs, not even weed anymore, don't/can't drink, eat healthily but I keep getting worse.

So yeah, I managed to get an appointment, but it's not until next year and I've reached breaking point NOW. I may be ten times worse by then.

I cannot have this conversation with anyone else, I just get asked 'what do you want me to do about it?' and then dismissed. If I knew what to do about it, I would have done it.

 

[yonkapin]

I read your first thread where you said you went cold turkey off diclazepam at a dose equivalent to 1000mg of diazepam daily, that's pretty intense! Maybe you're dealing with post acute withdrawal symptoms?

You might benefit from getting on Diazepam and doing a very long taper, or looking into other GABAergic drugs like Gabapentin or Preglabin.

https://www.benzo.org.uk/manual/ - sure you probably know this site already but it's a good resource anyway.

I would seriously switch GPs/clinic if you don't think they're helping you. I don't know how the NHS works but if you have the money, I'd suggest you explore private clinics. Or possibly look for doctors who specialize in benzodiazepine withdrawal - they would probably be more sympathetic to your situation given your history, or just see a few doctors and see someone who is willing to put in some extra effort to help you. I know in Australia they don't share your history between GPs, so you could possibly see a doctor and feel them out before telling them about your history.

 

[.bill]

I'm going to offer some thought on this there is drink you can take nightly that is very beneficial to your symptoms it is called Kefir you can find it in a good health store or if you have a Polish shop close by they will have it. Look it up and find the benefits of it. I've been taking it for two years it has definitely helped

 

[Chezombie]

I read your first thread where you said you went cold turkey off diclazepam at a dose equivalent to 1000mg of diazepam daily, that's pretty intense! Maybe you're dealing with post acute withdrawal symptoms?

You might benefit from getting on Diazepam and doing a very long taper, or looking into other GABAergic drugs like Gabapentin or Preglabin.

https://www.benzo.org.uk/manual/ - sure you probably know this site already but it's a good resource anyway.

I would seriously switch GPs/clinic if you don't think they're helping you. I don't know how the NHS works but if you have the money, I'd suggest you explore private clinics. Or possibly look for doctors who specialize in benzodiazepine withdrawal - they would probably be more sympathetic to your situation given your history, or just see a few doctors and see someone who is willing to put in some extra effort to help you. I know in Australia they don't share your history between GPs, so you could possibly see a doctor and feel them out before telling them about your history.

I would love to, but unfortunately my medical records will follow me wherever I go like a bad smell. The addictions agency who were supposed to help me, but wanted me to cold turkey the Diclazepam in SIX WEEKS, have contaminated my records with untrue statements, including many false ones about the drugs I abused. It states I used heroin when I have NEVER in my life touched it, the only 'illicit' drug I've ever used is weed. I 'tapered' off it very quickly, in about only two months, it was horrendous. I became bedridden, could not read, could not walk, my face drooped like a stroke victim, could not write, could not think, lost my memory, could not watch TV, could not play games, could not interact with people, all my friends have deserted me, I lost everything and what I still have is dwindling because I am so unwell. Every plan and hope I had was erased.

the 'brain fog' has lifted though, my mind is returning, my memory is way better, I am able to become absorbed in stories again, TV shows and movies are so much fun now, I kind of lose myself in it, like the world around me does not exist for a while. So this is proof I am healing from this, which makes me think all the physical symptoms may be related to something else now. People heal from Benzo use and withdrawal, Ashton says so in her manual and I am walking (or shuffling!) proof of that fact.

They've made sure no doctor will touch me with anything other than paracetamol (which makes me sick). I've sat in front of many doctors sobbing and shaking from excruciating period pain (that began when all this did) and been told 'our options are very limited, you haven't left us with many choices' etc, meaning basically go away and get over it, some months are so bad I'm passing out and delirious.

I really don't get how they judge people by character, for example my husband is on co-codamol and Tramadol for his spinal condition, two addictive medications, and he hardly EVER even gets asked for a review or anything. If I dare mention pain or sleeping issues the first response is usually 'we really don't have any options'. I didn't think doctors were allowed to assess patients by character?. Just because I was very silly with Diclazepam does not mean if I was 'reinstated' on a prescribed benzo such as Diazepam as you suggest, and allowed to follow a very long, assisted taper, that I would abuse it, I would not and would be willing to comply with anything asked of me, daily collection at the pharmacy even if needed. I am in such a bad state now that I would jump through rings of fire if it meant mitigating these symptoms.

The problem is they won't see it as a physical health issue, they see it as an addiction issue, and addiction treatment services were auctioned off to the cheapest bidder from the NHS a couple of years ago. this means if I asked for this, I would be referred back to the addiction agency who still prescribe me the Subutex for the codeine issue, and told NO way, but you can go on psych meds like Quetapine if you like. I have severe reactions to every day chemicals and meds like Ibuprofen, perfumes, soaps, eczema ointments, inhaled and topical steroids, food additives etc, they all make my symptoms worse, my tinnitus becomes the only thing I can hear, my muscles go crazy, the tremor goes off the scale, my body goes into meltdown, so I can't even bear the thought of what this may do to me.

I do not want to get high, I do not even want to feel good, I just want my tinnitus to stop and my body to stop vibrating inside, this way I think I could tough out the other symptoms like burning, thirst, itching, muscle pain, bone pain, joint pain, swelling, sinus pain, you name it.

Nothing scares me after this, literally, once someone's faced these things, any fears you have are quickly put into perspective.

My main concerns (only for others really) are one, this is something like Parkinson's, and I will become a burden and a drain on other people.

Two is that I will lose my sanity, I will eventually break from the 24/7 torture going on inside me. I must admit I feel close, very close, to some kind of edge.

To make matters worse I think I've had a cold this week, that's sent the tremor into overdrive. I am so uncomfortable I cannot sit, I have to either lay down or stand up, sitting is excruciating. Also I have to be careful not to stretch my muscles because I may consciously stop stretching, but my muscles carry on stretching and the pain is out of this world.

Going private would be too expensive, and due to what's in my medical records, I'd most likely spend a lot of money just to be told the same thing, you're an addict, go away.

If I am very honest, and I do not ever talk about any of this off of here, I can't, too much of s stigma and too many judgmental people, I do not want to carry on living if this is what my life has now become. I've had enough. I am not mentally ill, I have all my mental faculties (at least for now), I consider myself in the same league as someone with any kind of incurable illness, someone who's had enough of living with that illness.

No amount of mental therapies would help me, I can discuss this until I'm blue in the face, unless the said 'therapy' could physically take away my illness and my symptoms, then it is of no use to me at all.

Sorry to go on and for being a bore.

 

[Greg Sacramento]

@Chezombie I can relate to so much in both your postings. Those with very severe conditions cannot habituate and we both know that. The only thing that may help a little is mindfulness. I practice a developed method taught to me by a friend in the psychology field before I had tinnitus for another very painful condition. Dr Gans in the doctors' corner has a method, but somewhat different from mine. Mine is more based on survival than meditation.

An example to maybe help fall asleep. I place myself in the middle of Canada. There's bears and other wild animals roaming around, but I'm in a safe mode building with stone walls and it's very open on the inside. I am there with others. The place has several floors, but only windows on the top floors. On the top floor there's a patio. This type of make believe helps me fall asleep.

 

[PaulBe]

I think the only useful thing to say to Doctors is.....

You know f**k all, and I'm not paying you for ignorance.

 

[Chezombie]

@Chezombie I can relate to so much in both your postings. Those with very severe conditions cannot habituate and we both know that. The only thing that may help a little is mindfulness. I practice a developed method taught to me by a friend in the psychology field before I had tinnitus for another very painful condition. Dr Gans in the doctors' corner has a method, but somewhat different from mine. Mine is more based on survival than meditation.

An example to maybe help fall asleep. I place myself in the middle of Canada. There's bears and other wild animals roaming around, but I'm in a safe mode building with stone walls and it's very open on the inside. I am there with others. The place has several floors, but only windows on the top floors. On the top floor there's a patio. This type of make believe helps me fall asleep.

Yeah I often do similar things, but they don't help me anymore. It used to, but it seems the more I try to focus my attention onto other things, the more extreme the tremor becomes, then my T gets louder.

I honestly tick all but a couple of boxes for Parkinson's Disease, many people say theirs began with this excruciating internal tremor. https://www.ncbi.nlm.nih.gov/pubmed/8771060

Also I am now getting tremors in my hands, my thumb and forefinger lock into a 'pinch' position.

My granddad died from Parkinson's, it's in the family. Maybe messing about with drugs has triggered it early in me?. I just want to know, so I can take steps to prevent myself getting to the point where I need 24 hour care and lose my mental faculties. I've seen too many people go out from Dementia and Parkinson's disease, so bad they've not been able to recognize the person in the mirror. I won't let that happen to me.

I'm only 31, if this is Parkinson's or something progressive, that's a hell of a lot of years left to ruin other people's lives. I've done enough harm to others without being dependent on them to feed and wash myself.

You know what it feels like when you sit right on the wheel when riding the bus? Well that's what sitting on a chair is like for me.

I am sorry to be such a bore and to go on, but I have reached the point now, where to be honest, and nobody else in my world knows this, but I think about what it would be like to die all the time. I wish it would happen to me naturally, that some incident of fate would just pick me off tomorrow. If I read about someone who died, I think to myself (horrible I know) 'you jammy git'.

I'm not the person I used to be before all this began, I was creative, had friends, went out, had interests, I could express myself, laugh, I was alive, now I am not even a shell. I miss that person so much, I am not them anymore.

A shell would be something, a starting point to rebuild from, but I don't even have that, these symptoms have taken everything away from me.

My life is about nothing more than trying to get comfortable when every position feels as if an earthquake is tearing through you, trying to sleep with high pitched needles of sound splitting through your skull while every fiber of your body is vibrating, non stop, 24/7.

On top of all this I cannot hear properly, I hear things that are not there, voices, whispering, bangs, all sorts. I am practically deaf in my right ear. Again, nobody can see it, so it can't be happening. It doesn't show up on the tests so I must be making it up.

The only emotions I feel now are sadness and anger.

 

[Greg Sacramento]

@Chezombie I'm very sorry for all your conditions. I understand how that wouldn't be of much help. It's getting difficult for me to use this technique as my T is getting worse due to other contributing health problems. All it does is sometimes aide me to sleep a little when I'm exhausted. It would not work before last month because I would wake up with electrical fire storms in my entire head and could not move my painful neck.

I don't have 30 medical conditions like yourself. I have 22 that's listed on my patient online portfolio. Living with catastrophic tinnitus on top of every ever physical condition is incredible. I'm now mostly at the C levels, but when I post, I'm at a lucky 9/10.

Most on this site are very understanding. They will not tell you, me or others with very severe/catastrophic T that we can habituate and live happy and productive lives because they do understand.

If you could see a compassionate neurosurgeon or even a neurologist - that may make a difference in at least getting proper consideration care from all in medicine. Neuros rule and all other doctors don't dare to step on their feet.