A diagnosis - but I have no idea!

Lubs

Hi,
Sorry I've not been on lately because I've been feeling really unwell. In fact it's just a viscous cycle of waking up - feeling fine once I've overcome the morning stiffness, I can last 3 hours, then I'm desperate to sleep. So desperate in fact, I will start to fall asleep anywhere. I get back up about 11.30 to 2pm, then I will sleep until 4pm. I can manage to stay awake until 7/8.30. Then I'm out for the count. I do not have a normal life!

I've been diagnosed with PsA, spondylitis, and now fibromyalgia. In fact when the consultant was checking for fibro, he squeezed my arm really hard, one hurt the other didn't, he seemed confused so put it down to fibro. Everything is being put down to Fibro! Dry mouth, eyes, loss of appetite, weight gain, rash, extreme fatigue, back pain like you cannot believe, bowel incontinece (sometimes), unable to walk - all of this is down to fibro. There are many more problems, but I just can't remember them at the moment.

My consultant had to send a letter to my GP as I insisted that it is done, for my early retirement forms. Anyway, no one has mentioned to me what severe axial disease in the upper spine means? While in the mean time, I find backache when I breathe in. Instead I'm told to increase my intake of pain relief.

At the moment I only go out once a week, when my husband is able to support me. This is not the way to live! Yet I'm expected to continue to teach science! The children in London would run circles around me! What a joke!

dreamdaisy

I admit I'm a little confused by your post: do you have PsA, spondylitis, fibro and severe axial disease? If doctors mention a term you have not come across then ask them, there and then, for an explanation. We are not docs and shouldn't advise about such things.

I have PsA (which is flaring very nicely at the moment, I am 'enjoying' my second week in bed) and my fibro is evident in increased muscle pain and general over-all tenderness. My OA has currently taken a back seat but I have no doubt it will spring forth once the flare is done with me. Of course my life should be better than it is but it isn't and I have to whether the storm. I will because I've had practice over the past eighteen years and you will learn it too. I wish you didn't have to. DD

Lubs

Hi DD,

Sorry for sounding confusing. That is another thing I'm very good at, When I speak the sentences make no sense, words that haven't been invented as well, seem to pop out of my mouth. I feel like it's killing my brain cells.

I have a confirmed diagnosis of PsA, spondylitis and Fibro. The axial disease was mentioned in addition to these three in the same letter from the consultant to my GP. It just says 'severe axial disease, particularly upper spine. Pain in feet suggests peripheral disease. I have advised her to continue with medication, but have told her I will keep an eye out for any new medicines that come onto the market'

The letter is very very short. My GP just shrugs and smiles. He hasn't got a clue! My next appointment is in 9 months, all going well (if no cancellations occur), hopefully the consultant can explain what it means then!

stickywicket

I find the apparent complacency, particularly as regards the bowel incontinence, a bit odd. What dø they attribute it to? You also say your GP 'shrugs and smiles' What meds do you take? Could any of your 'fibro' problems simply be a reaction to meds?

Boomer13

Hi;

Your situation and schedule sound not unlike my own. I have PsA, spondylitis but no fibro (I have Raynaud's and a neuropathy instead :roll: ). I'm not a doctor but axial disease is spondylitis (PsA affecting the spine). It's just doctor-speak saying you have PsA-type arthritis in your spine. My upper spine and neck is severely affected and somewhat my SI joints and lower spine. The arthritis in my upper spine has lead to kyphosis, a forward curvature and limited movement. Plus, it's very painful. The meds for this are the same as other meds for PsA, AS; DMARDS, biologics, NSAIDS, etc.

I don't know if I can be of any other help except to say that my life has been turned upside down too and, I am only up and about for brief periods. When a flare has settled down for me, I still am rarely functional past 4-5pm in the afternoon after having naps throughout the day. During a flare, I'm not functional at all and stay pretty much in bed. It's not a life and sadly, there are quite a few others out there that suffer similarly.

Take care, I hope the docs find a med that will give you some relief.

xxAnna

Lubs

Thank you Anna,

I feel like I'm not alone. I really thought I was going mad! I've been awake since 5.30am, feeling good but I know as the time progresses I'm going to get worse. My back is curving and has been for many years, my dad's mother had kyphosis, which greatly reduced her height - but other than that I can't remember much more. My parents are divorced and I gain no information from my mother, even after 31yrs, and my dad cut off all contact and has a new life, family in America. I've had a lump/hump behind my neck and the x-Ray shows pronounced curvature in the upper spine, both my husband and I saw that when the counts ant looked at them.

Hello Sticky!
The incontinence is bring controlled with morphine, which makes me constipated. I informed the consultant that taking the morphine and iron tablets really really constipates me, I was given laxatives. Really strong ones I'm basically trying to balance the amount I need, otherwise, if I take the amount they recommend I'm back to square one, but if I take two/three in a week (instead of a day) I do not tend to suffer from the incontinence. I've been really honest with them and told them what I'm doing to prevent the embarrassing condition, they don't care! They have no answer for the reason for why I'm suffering from this.

P.s I never go to any medical appointment by myself anymore because I'm fed up with the way these gp's and consultants quickly diagnose or dismiss me, so either my husband or my mother have to take time off from work to accompany me, they are alway in there asking questions on my behalf.

dreamdaisy

Iron tablets are well known for causing constipation. I suffer occasionally with it thanks to the cocodamol (that's my pain 'relief' of choice and I keep it to the minimum) but when I have to up it I also take a couple of Docusate capsules to keep my drains flowing. It sounds as though whatever the docs are giving you is far too strong so ask for other options. Check your diet too, include more iron-rich foods, eat figs (they are nature's unblocker), more fibre and drink lots of water to help things through and then, maybe, you could stop the iron tablets. DD

PS The morphine could be causing the muddled thinking, it flattens both the pain and the brain.

stickywicket

I agree that it does sound as if you might have a meds problem. In your situation I think I'd see my GP and ask if we could work out something less drastic.

If you google 'iron rich foods' and 'foods rich in fibre' you might find you can get yourself on a diet that would mean you could, in consultation with the GP, eventually stop taking the morphine, iron and laxatives. I presume that you, like me, prefer to be in control of things rather than leave everything up to pharmaceuticals. Don't just stop taking prescribed meds though without consultation.

Lubs

Hi,

I have tried coming off the morphine, I spoke to another GP at the surgery about it and they suggested I do it by lowering the dose. Which I started. However, my GP went ahead and increased the dose because of the pain I did request to have an alternative painkiller as I was worried of becoming addicted to them. I've been on morphine for over 1 1/2 years now, but he said I can be on them for a very long time. I'm on 100mg daily.

I'm also on pregabalin 300mg per day this has also recently been increased from 150mg. When out shopping I become disorientated easily, and suffer from headaches.

I have 6 weekly infusions of infliximab which has also increased in dose, because of weight gain - I'm not eating much, but whatever I do eat goes straight to my waistline.

Methotrexate 12.5 mg weekly, which I take on Friday night as I usually suffer from dizzy spells.

Topirimate 100mg daily to prevent the headaches, which are useless at the moment! I can only wait to see what the neurologist says about this all. He's the only decent consultant that I have!

This is the list of medications, I do take the iron tablet now and then on Mondays, but I also take vitamins (not near or on MtX days). As for diet I've always suffered from gluten intolerance before the PsA, spondylytsis, and Fibro diagnosis. So much so that I have to buy gluten free stuff etc. the GP had me do an exclusion diet for 6 months and keep a diary - but no official diagnosis was made as the PsA started and stopped the gluten intolerance diagnosis.

dreamdaisy

Your body is trying to cope with a daily onslaught of very strong meds so no wonder it's 'misfiring'. 100mg of morphine per day? Plus the pregabalin? Strewth.

There are no easy answers to living with pain 24/7 but many of us do and it is helpful that we adjust, otherwise we become addicts of another kind: legal and supplied by our GPs. Obviously there is a great deal going on with you with your PsA, spondylitis, fibro etc. and I can empathise as I have PsA, OA and fibro but, after years of practise, I cope. My GP is not much help on the PsA or fibro front, and my rheumatologist likewise on the OA front. I flog on, however, because this is my life and I have to. I have always preferred alert and in pain to dull and not-in-quite-so-much-pain. I'm odd. DD

Lubs

Thanks DD you've just help me come to a decision. I'm going to slowly reduce my intake of morphine. I remember the GP's advice, so I will need to adjust my medication slowly, but hopefully I will come off this horrible painkiller.

Once I've done that, I will speak to my neurologist about an alternative pain killer that I can take, without theses side effects. Like I've said my neurologist actually listens and he will know what to do. I have an appointment in August.

Thank you
Lubs

dreamdaisy

I admit I wasn't sure to post my reply but, in view of your reply, I am pleased I did. It took me nearly a year to stop my oral steroids, I vaguely remember my GP thinking it could be done in three months and rheumatology in around six: none of them, however, were me. I knew from reading on here that many people struggled once they reached 5mgs so I determined to do it differently and I got there in the end.

I know I cannot tell you what to do but this is what I did: reduce in the smallest degrees possible and give yourself a suitable time to adjust to the new, lower levels. With the pred I was able to reduce in either 1 or 0.5 mgs and I did so every three weeks. It was not easy but I am so pleased I persevered. Please talk to your GP about this, you will need his support. DD

PS Our new lives are not easy to come to terms with, far from it: I am aware that I have had many years of adjustment which helps me but may make me appear to be unsympathetic to others - I assure you that's not the case.

Lubs

Hi

My medication comes in 10mg tablets and 30mg tablets. No halves I'm afraid (although I do have a pill cutter I don't think I should used it on them).

What I've done is reduced it like the other GP told me to do so. I've just gone down by one tablet of 10mg, and will do so for 2/3 weeks. Then I will reduce it by another 10mg. I know it's going to be a very very long process, as I'm starting at 100mg . But I will come off this medication! I will speak to a GP about this, just not my normal GP, as he is all for pain relief. I will also speak to my pharmacist as they order the control drug, morphine and he's very good and could order it in smaller doses.

I'm just fed up with all the meds and not being able to even read a book is starting to irritate me!

Thank you for your advice. I'm down to 90mg!

dreamdaisy

The only way is up - it's like you're at the bottom of a deep pool so every 10mgs you cut out the higher you will rise towards the surface. Yes, it's going to be a long process but well worth it in the end; your brain will come back to life and you will be able to read properly again. I treated myself to a Kindle Paperwhite so I can read in the night without disturbing my sleeping husband. Mind you, he doesn't mind disturbing me when he can't sleep. DD

stickywicket

You do seem to be on a lot of meds and they can bring their own problems. I don't know how wise it is to just reduce anything on a DIY basis though so it's a good plan to speak to the helpful GP. Sometimes meds beget meds. Please keep us in the loop, Lubs.

Bovey

I have taken morphine and fentanyl for 20 years. One of the GPs increased my fentanyl from 75 to 100. I was bedridden, almost comatosed by opiates. Sleeping all but 2/4 hrs a day. The new level became toxic. Severe dizziness, chest pain and difficulty breathing when lying down. At my urgent request a GP visited and in a bad temper at having to do a house call declared I had had a panic attack. I was left like it for 2 months! After a really bad day I took the 100mcgs fentanyl patch off, waited for withdrawal symptoms to kick in and then put on a 50mcgs patch. The next 3 weeks were bad, I then reduced the dose further to 25, but slowly this time. I used acupuncture, distraction techniques, heat, anything other than more opiates to reduce the awareness of pain. What I did with the fentanyl was totally wrong!! Don't repeat what I did. The moral of the tale is this; opiates are a necessary evil, treat with caution, take only what you absolutely need and no more because the side effects are not good. It is very easy to want to get rid of pain with more drugs. Try other techniques first if you can. I learned the hard way.

stickywicket

Lubs, have you ever tried a Pain Clinic? That could be a way forward for you.

Lubs

Hi

I've been told a couple of times by the consultant and GP about them referring me to a pain clinic, but when I come back home, months go by and no referral is made to the clinic.

What really doesn't help is that my husband is practically pushing the morphine tablets down my throat. I'm afraid to say I'm in pain, because it know he will bring out the oral morphine solution and insist that I take a dose (on top of the 100mg). So I've totally stopped saying anything to him about the pain. I know he is only doing what my GP has instructed and he thinks I'm frightened of taking the medication due to being addicted, but that stupid GP told us that I can be on this dose and higher for a longer period of time.

Yesterday I posted that my head really really hurts, I think I'm getting painkiller induced headaches, they tend to start about midday, last all day and are really debilitating.

There is nothing to do, but I insisted on a phone consultation with my GP - which will happen on Monday. So let's wait and see what he has to say. I want to stop taking these pain killers, and he needs to do something about it and the headaches. :x

Lubs

Hi Bovey,

It's like you are describing some of the symptoms that I'm having. I have severe back pain at the top, where it become difficult to breathe in and out, as if someone has hit me in the back and I'm really bruised. The dizziness and disorientation is getting to me, I have to put my head down to stop it from happening, or I feel like I'm going to fall over. Currently for this week the headaches are just becoming a constant. They start at the back of the head, just above the neck, then it goes to the front of the forehead. It feels like a pressure headache, which can only be relived by laying down.

The only thing I can explain that comes close to this is 19/20 years ago when I had my son, I was advised to have the epidural. Well, the stuff they put in it, mixed with the spinal fluid and I needed two consultants to give me a blood clot in the spinal tap space to stop these headaches. I couldn't sit up with them. They prevented me from being discharged from hospital, but my son was, I stayed for a month and needed two lots of treatments.

These headaches are a lesser version of those!

stickywicket

I do hope the phone consultation helps. And, if you want an appointment with a Pain Clinic, then ask again and chase it up, Lubs. Sometimes we have to be pro-active.

As for your husband - I guess he loves you and just can't bear to see you in pain. Mine would be the same. If I mention pain he thinks dullers and if I mention any other medical problem he thinks doctors. So mostly I don't

Please let us know how the appointment goes.

Lubs

Thanks Sticky I will.

We went out today, the first time in the week for me! As soon as I started to feel dizzy and disorientated he managed to get me home.

Problem is I've got other family members who do not understand why you aren't visiting them, or phoning to say hi, and they take offence. So I'm not answering the phone. Only problem with the headaches, I've become a bit thick, as someone texted are you asleep? I replied yes! :oops: then I had to avoid their calls. My husband has to constantly figure out what I'm trying to say to him, could you imagine me having a conversation with someone who's not clued up on my illness? No - I can't be dealing with that as well.

Take care I will let you know what the GP says on Monday. :?

dreamdaisy

It sounds to me as though you are well and truly doped up to the eyeballs hence all the sleeping, grogginess, disorientation etc.

Pain is a fact of our lives - not only do we have to learn to live with it but those around us too have to do the same. Morphine is not an answer - the pain won't be subdued but you will, as you're finding out. DD

stickywicket

Ask him about a Pain Clinic, Lubs. I find your list of meds terrifying. Give me good, honest pain any day. But don't do anything off your own bat. Make sure any reduction is monitored carefully by a doc.

Lubs

Hi,

Today's been hard. I can feel the pain in all sort of joints, but I know deep down it's not arthritis. I can't explain it. I've reduced my dose by 10mg and feel much better in the mornings. It's just a bad day today. The only way to explain it is like how your body aches when you have the flu! I don't have any symptoms.

Thank you for your support, hopefully tomorrow I can get referred to a pain clinic. :?

dreamdaisy

And that, in a nut-shell, is an auto-immune arthritis; it gives the fluey, achy deep bone pain but it's not 'flu. Welcome to our world - it's a tough one. DD (who also doesn't have 'flu)

DebbieT

Hi,

I've only just caught up with your thread, my apologies!!

I have PsA, OA & Fibromyalgia too. I'm very surprised to hear that a rheumatologist is prescribing opiates to treat FM as they are proven to be ineffective & aren't recommended at all for it!!
Pregabalin & Gabapentin are widely used tho. You mentioned weight gain ... I put on about 3 1/2 - 4st in about 2years whilst I was on pregabalin. I made the decision, with my Drs, to come off of it, even tho it worked extremely well for my FM, as I felt the risk of the extra weight I was carrying was too great on my joints etc

I hope the Dr you speak to today fully supports ure decision to slowly come off of morphine. Remember that it's your body & therefore your choice wot you put in it!! Perhaps rather than asking you'd be better off saying 'I've decided I want to .....'

I have Cervical Spondulitis, which as far as I know, means I have PsA in my neck ... That's the impression my rheumy gave me. I had an injection near-ish to my spine about hip/waist height, somewhere in between, & it relieved a massive amount of pressure. It caused headaches, like you describe, b4 I had the injection.
I now suffer with complex migraines & vestibular migraines so take 75mg topirimate morning & night plus I have nausea meds & migraine tablets .... We're such a lucky bunch But the steroid injection from my rheumy really helped with the headaches my neck caused & the stiffness there too.

Please do remember that on top of the morphine causing you to feel confused & disoriented that it's quite possible you have wot we call 'fibro fog' too. It makes it hard to find words, names, places etc I was watching a tv show yesterday & someone knocked on the door on the show .... I went to pause the tv so the girl could answer the door!!! How crazy is that?? :oops: Muddling up words, sentences & times etc are all very common as well.

Again, good luck with your phone appointment.

(((Hugs)))

Xxx xxX