Just joined 😊

[Catnips75]

Hello, I'm Lynda. I am 42 years old. I suffer with MS. Also have vertigo, asthma, hypermobility, high blood pressure, terrible tinnitus, have chronic pain, and recently diagnosed with vascular (inner and external carotoid arteries are completely blocked. They can't Stent or anything as the vessels are too small?) I'm with the chronic pain clinic, but feel ignored still. The pain relief I have isn't enough. Am on a lot of med,I started 20 mg Zomorph a couple of months ago. It's not really helpful at that small dose. They won't prescribe me a higher dose nor sort normal release morphine. I'm on 1200mg Gabapentin too. I've been given a TENS machine. Is helpful but not practical. I don't know how to get attention to help improve my pain relief. Am jumping through hoops after hoop and feel let down and alone. Been in pain many years (been ignored,not believed ect ) and am at the end of my wits . Can anyone help? 😕😤😥😨😳😞😷😩😢😵😭😔

[Mary-intussuception]

Hi Catnips. This sounds terrible, how are you coping with all this and especially the diagnosis of the Carotid Arteries? You are very brave. I am not medically qualified but am wondering which Consultant you are under for this. Are you being cared for by a Neurologist or a Neurosurgeon?

Not familiar with your pain meds. I know my brother had to keep upping the Gabapentin, then he came off them .He'd had enough as they were no longer helping. If you try that I suppose you'd have to ask doc about gradual withdrawal.

What have you been prescribed for the Carotid Ateritis? Did they say they were blocked / occluded? Don't understand what you mean by internal and external - don't know that much about them. So have you had a stroke?

I've never used a Tens machine but if it helps is it worth persevering with. What's the problem isn't it easy to manage?

X🐥

[Catnips75 in reply to Mary-intussuception]

Hi ,I am prescribed clopidogel, high blood pressure pills n statins as well as the pain Meds. They are occluded (completely blocked. Am under a neurologist, chronic pain team, GP (MS nurse tooh n physio )

Inner and external carotoid arteries are completely blocked. I've been suffering TIA's (mini strokes regularly, mistaken by me to be my MS!!)

Am not having a great time tbh n am tired of fighting for decent pain relief . Got PIP mobility tribunal on 27th October, so am very stressed.

Just spoke to GP surgery really Meds (a few nights through the month I took 30 mg as was needing pain relief now so was left short. Doc wasn't gonna do me any.but she's said will sort. She thinks I'm popping em like sweets 😕,I'm not at all. 30 mg helped 😯)

Am very fed up n sick of it all tbh. Wish I'd get taken notice of

Lynda xx

[mmbspaced]

hi there, it sounds like hell, i am on pregabalin and was on gabapentin, it is an alternative that works for nerve pain, i am also on 40mg Zomorph am and pm in modified release, i have Oramorph 10ml/5mg for breakthrough pain I am also on diazepam only 2mg as only just started, the diazepam if used as and when, it is a muscle relaxant and helps as a good chunk of my pain is from my spinal ganglion, I have been in a great deal of pain for the last 30 odd years after a motor bike accident, and I have found that doctors just do not understand how life destroying pain can be, the only way I got anywhere was to just not let up, I finally demanded a referral to the pain clinic and they were not much better, my main condition is complex regional pain syndrome and they do not understand it properly like so many other condition, after 4 nerve blocks one that left me in much more pain I stopped going, I got to the point when I made an appointment with a local GP and all but broke down, so the start of what I hoped would be light at the end of the tunnel I went back and forth to the doctor trying out different doses and mixes, was finally put on morphine, and stopped all my other pain meds pain was less for a couple of weeks but my pain is up and down so cannot say if it was the meds of just happened, I have had a huge fight to get to this point and to finally have a doctor that was in palliative care and very used to morphine and doses etc I thought great there is real hope, then when being told by him to book another appointment in 2 weeks so he can assess and adjust the dose up, I am told he left the practice!!! To be frank I just felt like sticking a rope around my neck and saying stuff it enough is enough. But persisted and spoke to another doc to find not only had he left he had not made notes for my last appointment so I did not even have the meds I was on, I had to explain it all and he finally agreed to put the new meds on my repeats so I can order them every month, I need to go back and see another doctor now and hope this one is willing to help, I have had depression since my brother took his life 40 odd years ago, and when I got the pain that triggered the depression again, and for a good few years I got stoned nonstop just to escape at least some of the pain, so depression and drug abuse not a great when you are asking for potent drugs that can also be abused, even when I explain that both depression and drug use was 100% down to the pain, it is a very hard struggle to get a doctor that will offer anything that might be strong enough to do the job, but time will tell at the mo I am still in a lot of pain and spend 23hrs a day stuck in bed, 1hr in wheelchair or bath. But fight for it you must fight and make them see that you need the help, and if all else fails threaten to make formal complaint and if the complaints fail then tell them you only recourse to make them see the need is to take a civil case against them to sue them (UK law) they need to see you are willing to take action some times before they get their act together, god I miss the NHS, used to be so good, now look what is left, doctors that want to save the cost of a medication rather than actually helping people, what ever happened to the Hippocratic oath? Best of luck and do not stop till you have what you need

[crpsSucks in reply to mmbspaced]

I don't think most dr's understand what chronic pain is. They think that because you're not making a loud drama, that you're not in pain.

Some times I some lay in bed a laugh (I have a twisted sense of humour) thinking: a normal would call am ambulance by now, but this is my normal.

This month has been exceptionally challenging. Being accused of being a drug seeking/ addict by the pain specialist (offered capsaicin cream), and again by a MH Dr later the SAME day was a low point (I'll write about it one day). Thankfully my GP has increased my pain meds, so things should get better.

[Catnips75 in reply to crpsSucks]

I'm in proper agony most of the time, so I totally know what u mean hun lol

Wish I could thrust it on them for a day, they would soon start helpin lol

I want to b comfy at least, is it too much to ask lol. Not sure my GP would put em up tbh

Am goin to Mobility PIP tribunal on oct 27th. Being without a decent car is becoming a huge nightmare!!Hope I get it back : /

[crpsSucks in reply to Catnips75]

You shouldn't be in agony all the time, you do have the right to a quality of life. The past few weeks I was on the brink of being sectioned, having your freedom taken and knowing that's the best place for you is pretty scary. Now I'm sleeping, I can focus on other things like my work & planning to going swimming tomorrow.

It wasn't until I moved, that I realised how bad my GP was. Saying "you shouldn't be in so much pain" is not an acceptable answer. Why is there so much pain, what can be done about it. I do think that once trust is broken (it should go both ways, but at least you trust them), you need to find another dr.

I hope the tribunal goes well for you

[Catnips75 in reply to crpsSucks]

Can't seem to get help in trying to find out why I'm in pain lol. I guess money n docs are in short supply? ? I just want to feel "comfortable " at least. Not get told some Meds don't work on everyone (there's plenty of medication out there,they just don't wanna ,I think costs is part reason? !)

My GP is a nice lady n a good doctor but feel she hears me but ain't listening. Hope u r well xx

Lynda xx

[crpsSucks in reply to Catnips75]

Cost is a weak excuse; there's many people out there who have had dozens of operations, or are prescribed medications that cost thousands per month yet have questionable benefit. Most pain medication is in the WHO's list of essential medications because the benefits far outweigh the cost.

It's nothing personal against your GP, it's about getting the treatment you need. If her treatment isn't working, then it makes sense to get a second opinion. If all else fails there's always writing a complaint. I've found keeping a pain diary helpful, to log when your condition is effecting you, and even the good days. Listing the points you wish to discuss with the Dr is very beneficial.

I'm good, I went on a date last night. I remember waiting in the bar feeling happy/ relaxed, thinking it was a world away from how I felt the week before. I also flushed the 'suicide stash', it felt uncomfortable at first, then I remembered how bad things had been, which made getting rid of them easier! The last month has definitely affected me, I'm not the same person I was before.

[Catnips75 in reply to mmbspaced]

I'm in tons of pain n have been for years! I was diagnosed with MS in 98(pevious doc made no notes for 2 years)So I was finally diagnosed(after th MS was rampant lol)

I don't know what my pain is n no one is really bothered to help me find out : / I'm being fobbed off all the time as as u said they don't seem to believe ur in pain as u look "normal". Feel is too early to complain,but I have been thinkin bout it as I really do hurt everywhere/allover 24/7. Zomorph 20mg, 1200mg Gabapentin, 50mg Amytriptaline(soon to be stopped n put on duloxetine)Was on 24mg tizanidine,neuro put it to half : ((

16mg betahistine(have vertigo) Zomorph doesn't last 12 hrs n she point blank refused med for breakthrough pain or to add owt else that could help. I am at my wits end, tbh. in last 2 yrs they found a prob in my MRI. I have complete blockages of inner and external carotoid arteries. I lost my Diclofenic n depo cos of it n now they messin me about lol. All I want is to b comfortable, This has been ignored by all docs I speak to over the years n now it's bad.

Lynda xx

[crpsSucks in reply to Catnips75]

One of the reasons I like Buprenorphine/ Fentanyl patches is that they last days, not hours. So you don't wake up in the middle of the night because the pain meds have warn off.

As you mentioned MS, have you tried Cannabis-based medication? There's vaporisers and Cannabinoids (has THC removed), which I believe are licensed for MS. I wish they also legal for CRPS, as the can't worse than strong Opioids.

[Catnips75 in reply to crpsSucks]

They won't prescribe the cannabis spray stuff lol. I won't get good stuff like the patches lol as they won't even consider upping my zomorph to 30mg (get 20mg,not enough! !) Am thoroughly sick of being labeled lol,cos doses r not high enough to help 😢😠😤😩😳

[crpsSucks in reply to Catnips75]

It's one thing for the media write crappy headlines, it's another for physicians to make similar assumptions.

The reason I stopped taking my pain meds was because the alternative was to take an overdose. Even then I couldn't get a drugs test to prove this.

The reason I finally had the pain medication was increased is because the alternative was being sectioned.

As I've tried to take my own life before, I know my triggers. I've been trying to get support for my metal health since the end of June. It's been a horrendous time, I don't understand why I'm still alive.

[Hidden in reply to mmbspaced]

Do you really think what you had to share was helpful? It's not about you now. It's about her.

[hazyjane77]

I assume you saw neurologists who looked at your scans? I really, really empathize with you. I also had doctors ignore/not believe me for some time until I found a doctor who actually understood my condition. It took a lot of time and research. Not sure where you are located but maybe someone here has a suggestion of someone in your area. You never know.

Can you find an MS specialist? Even if they can't prescribe you something, maybe they work with a pain clinic or have patients that go to pain specialists who are more understanding of the various types of pain you're experiencing?

I hope you can find a compassionate and knowledgeable doctor who can help you 🙏

[Catnips75 in reply to hazyjane77]

Hi there, neurologist is my MS specialist(plus my MS nurse!) I have many health probs and they r being very careful . And tbh, am really sick of it tbh . I'm with the Chronic pain team atm............Thought I was getting somewhere lol. NOT!!

[hazyjane77 in reply to Catnips75]

Ugh 😑 can so relate. I’m sorry that even the MS doctors aren’t helpful. I thought for sure if they knew your condition, they’d be more compassionate.

But having a crazy health history myself, if anything else goes wrong with me, doctors are too scared to do just about anything.. I hope things change for patients like us, but it doesn’t seem like that’s going to happen anytime soon 😓

[Catnips75 in reply to hazyjane77]

I'm still trying to get better pain relief! I went to see my GP last Thursday and was so upset she wouldn't put up the Zomorph I burst into tears. She gave me a extra pill and day for a week. Doesn't help much tbh. But am off to see the advanced chronic pain practitioner on the 6th November. I'm not holding my breath that I'll get anywhere lol. I was handed a TENS machine last appointment! That was the nurses answer. It's nice but not the answer or practical tbh. Will buy when I have the cash!

I had my PIP tribunal on Friday gone and won enhanced rate on both when was awarded (after mandatory reconsideration )std on care only! Am very relieved and happy,but miserable 24/7!

Hope you are well

Lynda xx

[rabbits65]

I remember years and years ago a doctor once said to me, "Who do you think I am, GOD !!! "