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Another pain clinic appointment and more waiting!

Nov 01, 2016 3:48 PM

I had my pain clinic app with the specialist nurse and I've come out with mixed emotions about it.
The nurse is lovely and she takes the time to listen and tries to understand, she herself doesn't have chronic pain and she admits that she couldn't even begin to comprehend what it's like ( I prefer when people say that rather than trying to preach what is best for me ).

When I was explaining how I've been recently and what meds I'm on ( there's been a couple of changes since the last time I saw her ) she was surprised. I then explained about Jo being dx with diabetes, then the message my ex husband sent to my cousin, the argument with my dad then what my GP said about me probably having Post Trumatic Stress disorder (I'm not sure that I've been formal dx with it yet? ), having cbt counselling, my doctor referring me to the community mental health nurse and the Pediatric Diabetic Team referring us as a family to the Early Intervention team (they will assess us and see if there's any help they can offer us or if there's a particular agency they can get involved to help us as a family) and my doctor ordering a load of blood tests to make sure there isn't something medically wrong.
She was happy that I'm actively trying to seek help and trying things like lavender oil in the diffuser, Reiki and hopefully after Christmas acupuncture and osteopathy, depending on finances I'd like to do both but probably one or the other. She thought the best thing was my GP referring me to the community mental health nurse.
I also showed her this app and the graph it produces and like my GP she thought it was great and that it shows how everything is interlinked and to keep up with the app. She's not changing any of my doses as I said I need to function when I can for the kids and I seem to be too sensitive to higher doses of meds.

The point that gave me mixed emotions is when I asked her about ME, fibromialga and lupus. she said that the meds I'm on can give symptoms of these conditions and that it's probably that which is causing some of what I've been having trouble with even tho I've been on the amitriptyline and morphine mst for over a year now!

Is that correct????
I'm not sure....everything seems to be blamed on the meds without any real concern with how to address it....

Nov 01, 2016 4:13 PM

Ohhhh ahhhhh the cart apple horse .. fibromyalgia is a sneaky bitch. I have chronic pain from nerve damage that remained after spine surgery ... A chaser of PTSD which I think helped along the general anxiety disorder.

I would say it's fair you have a dx of ptsd considering you are receiving treatment for it cbt.

I had discussed the possibility with my last dr for a couple of years ... He finally did the pressure point test. He said I have the signs and symptoms of fibromyalgia.

For me the biggest difference was how any pressure applied would hurt ... Son has boney elbows. Mostly my arms and legs.

Ohhhh and smells .. chemical sensitivity and sensory overload has been over the top.

I can understand your level of frustration ... A.simple pressure point test is a great place for someone to start ...

I understand chronic poor sleep has been linked to fibromyalgia so those at risk already are in pain.

Trust your gut. Sorry you have to fight to be heard.

Nov 01, 2016 5:17 PM

Foggurl I myself believe that I have either ME or CFS (reading up on them they're both pretty similar and it seems it's hard to differentiate between them but they say there is a difference???).

When I asked my doctor last week she said that ME and fibromialga have the same pressure points BUT reading between the two it says nothing about pressure points in ME. Yes there's joint pain and muscle pain but no pressure points like it says for fibromialga, altho it says pressure points for fibromialga can change from day to day.
ME also says that after any physical or mental activities you feel worse....which I do.....and you can be very forgetful.

I suffer with these. When I have to do anything physical, even washing up for 5 minutes, I need to sit down and anything mental like writing on here is hard.....sometimes I start writing only to forget half way thro what I was going to put and aafterwards I again feel tired but the forgetfulness is getting worse/more extreme

-- Jo and i went into the supermarket to pick up some dinner and get Jo's prescription. We picked up the script and dinner. as we were going to the check out I realised that I didn't have my handbag, we went back round all the isles we'd been down, went back to the pharmacy and asked if they had it...no they didn't, went to customer service....no they didn't, then as I was going to ask security I asked Jo to go check the car.....as security was telling no they didn't have it Jo came back in with my bag. OMG I felt so stupid, I could of sworn blue that I had taken it out of the car with me!!
I'm doing things like that soooooo much lately and it's getting worse but it feels that side of it no one is listening!

I'm going to keep pushing for answers tho.....

Nov 01, 2016 5:47 PM

Wow that's awful and how frustrating ... And a tad frightening ... I mostly feel disorganized and spacey but it seems pretty severe for you.

I'm find meds are poorly tolerated in my system so I've started to try something alternative supplements ... Working on remembering to eat GF ... I have read positive results, trying cbd oil, and a few others. I'm hoping to help the fibromyalgia symptoms without adding meds with the side effects.

I figure this is a way to be proactive in feeling better and the side effects will be positive.

I'm still taken aback by the nurse saying it could be side effects from your scripts.

Hopefully some others will give more insights to help.

Gentle hugs ((()))

Nov 01, 2016 10:46 PM

That's the thing that has completely frightened me....how I was completely convinced that I had brought my bag in with me only to find I actually didn't.
Like you I've been disorganised and a bit spacey for a while now but I've never done something like that before!

While I was with the nurse I got a text from my son's dad who has recently been dx with fibromialga, we'd been talking about different pain meds that might help him, I mentioned it to the nurse and her response was that fibromialga is a very drug resistant condition and there's not much in the way of meds that can help with the pain!

It seems my tolerance for meds is low especially at higher doses..
I'm trying to find alternative ways of trying trying to reduce my pain and especially the anxiety as not a lot of meds seem to help. My GP said to me that there's not many antidepressants left that I haven't tried!

I really don't think that a lot of my symptoms are from the meds not when the main meds I'm on I've been on for over a year and the extra ones I take for flairs I've never had these sort of symptoms before and it's only getting worse as time goes on whether I take the extra meds or even try to reduce my normal meds

Nov 01, 2016 10:56 PM

Sudden onset intolerances seem to be fairly common in fibromyalgia. Don't write off the meds theory completely. last year i was fine with dairy. Now I can't have any at all without getting sick.

Nov 01, 2016 11:09 PM

Oh wow gotobef, that must be hard and very limiting for your diet. Are you able to have non dairy milks like soya or almond milks and yoghurts?

I didn't realise intolerances could come on like that!

When I saw my GP last week she pressed on the pressure points in my knees saying that if I had fibromialga or ME/CFS that would hurt but they didn't so she instantly ruled them both out!?!

It's all so confusing and frustrating and I don't know what to do about it all!

Nov 02, 2016 1:41 AM

I can have assume alternatives. But i can't do sugar so i have to do the unflavored and they are gross. The only one that didn't make me gag or make my stomach upset was a rice beverage. no yogurts at all.

I have been diagnosed with fibro and only get the tender points when having a bad flare up. The criteria using tender points was initially for research purposes but somehow it became diagnostic criteria. There is new-ish diagnostic criteria that doesn't use the tender points at all.

Nov 02, 2016 1:43 AM

All you can do is live as healthy as you can. find your intolerances and avoid them, try to pace yourself, find what supplements work for your body.
I found doctors to be no help. naturopath are expensive but they are the only people that have helped me at all.

Nov 02, 2016 5:10 AM

Is a naturopath someone who does alternative therapies? a bit like Chinese herbal person?
Sorry my brain seems to be in a bit of a fog atm so I can't think of the correct words or professions!!!

I've found that I get a lot joint pains in my knees, hips, lower back, ankles and knuckles but I only seem to get the pressure points when all the pain is high and I'm feeling crowded like when both my kids want to cuddle me and they only have to touch certain points and it really hurts. I get a lot of muscle pain as well the worst place is my shoulders and neck which I think has cailused the constant pins and needles in my left finger tips and to a lesser extent shins, calfs, hips/thighs, waist, back and the tops of my arms.

The amitriptyline and morphine mst reduce the neuralgia pain but not the joint or muscle pain neither does the naproxen.

I'll keep pushing and I'll keep asking so hopefully they'll take the time to listen.....you never know pigs might yet learn to fly!!! LOl

Nov 02, 2016 5:41 AM

Gotobef ... Very interesting about the dairy intolerance ... I now am off it as well. Getting my head around no gluten now.

Sezzy, I try and eat anti.inflammantory foods and spices everyday. Luckily I love Indian since most dishes include all of them. You can get most spices in capsules now. Although that tumeric extract (blanked on the name) gave me hives the time I tried it.

I had mild sensitivity on a few pressure points and others brought me to tears. My feelings it can depend where an injury was.

Wow that pain nurse is so uplifting ... Telling you nothing really helps.

I can understand why you came away so discouraged and felt unheard.

I find I'm screwed if I try and multitask .. either I drop the ball or rush and then over do it. I plan out my day (ptsd anxiety thing) write a list and i hope I remember it) it's when things change I get stuck and then my brain starts to spin. Working on that coping bit now.

Hope today is better and you find some extra spoons today.


Nov 02, 2016 7:59 AM

Foggurl I put tumeric, garlic and ginger in nearly everything I cook....that is when I'm able to cook....but I also try to have green tea with lemon, honey, tumeric and ginger every day. I also take everyday a B vitamin complex tablet, evening primrose oil capsule, a garlic tablet (that is actually to stop knats biting me which actually works!!!) and a multi vitamin and mineral tablet.

What other spices, herbs and/or food should I add?

I want to try to ease my symptoms naturally without having to take more meds as a lot of the time the side effects aren't worth it and with many other meds that seem to help on a lower dose but not quite enough that the doctors put the dose up and then I can't function (worse than what i was originally) and even if they bring the dose back down I still can't function oo it.
The pain nurse said I'm sensitive to meds especially on higher doses and once that is triggered I can't tolerate the drug anymore!

Is there anything that can help with the exhaustion? Or the brain fog and forgetfulness? I feel like I'm walking thro mud most days

Nov 02, 2016 8:31 AM

The only thing that will help with the exhaustion and forgetfulness is sleep, which is almost impossible to get.

Naturopath are pretty much natural doctors that actually try to find the cause and try to treat that instead of just hide symptoms. Expensive but well worth it. A naturopath found my initial food intolerances and i think that probably saved my life. I was ready to end it. And now my new one hahas me on supplements that my body can actually absorb and that helps too. The wrong supplements can actually make thithings worse.

Are you on a muscle relaxant? Sometimes i find that's the only way i sleep at all.

I would recommend magnesium malate as a supplement, but talk to your doctor first. It has helped me with my muscle pain, took over a month a higher than recommend dosing but it does help me.

Try some light stretching, and i mean light. The saying is start low and go slow when it comes to physical activity. But i promise that it does help. very light stretching to try to get the muscles to release a little.

Nov 02, 2016 9:03 AM

I find splitting fibro into chunks mentally helps me not get super overwhelmed by it.
So for I've split it as follows:
Muscle pain, cramps and spasms - treatments include massage, acupuncture, stretching, magnesium malate, potassium, heat, epsom salt baths, Japanese mint oil applied topically to problem area, the odd muscle relaxant when is really bad and hasn't let me sleep at all.
Food problems - found by elimination diets and try to avoid because wow the difference in pain when the inflammation causing foods are gone. My intolerances include eggs, sugar, asparagus, dairy of any kind, oils, processed or manufactured foods, chemicals and preservatives, caffeine. Lucky for me the boyfriend likes to cook and we always have leftovers so i can freezer meal them for when I'm not ok so that i still eat healthy and not make it worse for myself.
Mental health - I'm not putting depression here because i don't like that word, i find its too overused. When i can keep things mostly managed my mood isn't so bad. Exercise also helps this one, i know exercise is impossible but really it's doable. start at a minute or 2 of walking a day and when that is easy either bump it up time wise a little or add another session a day. stay low and go slow. There will be eventual progress, it'll be slow but it'll come. we need to keep our bodies as strong as possible for as long as possible because muscle atrophy makes pain worse. I don't do strength training but i should. Im up to an hour walking on my elliptical a day and that only took 6 years. Also finding something that you like to do helps. For some it's coloring or drawing, i have a starwars lego problem. also if you need to rest you need to give yourself permission to and not feel guilty, that's something i think everyone is struggling with
Digestive issues - this one kind of ties in with intolerances but only kind of. i don't absorb things properly so even though i eat a lot im nutrient deficient, but no doctor believes me because my blood vitamin levels are good. However i bought a juice at one of those juicing places one day when i couldn't eat from jaw pain and even though it was nasty i felt a little more energy after drinking it. So i take vitamin d, omega 3, vitamin b12 and folic acid as well as the earlier mentioned magnesium malate and potassium.
Central sensitization - this includes light, sound, smell and touch sensitivities. I have been struggling with this one a lot since getting chemically sensitive in April and i have no words of wisdom. However i have found that if my pain gets out of control my brain stops being able to handle outside stimulation like lights and nose and my chemical sensitivities get worse so i try to keep the rest managed best i can so i can exist in the world.
I'm sure I'll split things more as more things come up but that's what I've been doing to cope. I have muscle relaxants and advil and that's it for medications recognized by doctors. I have an anti-inflammatory the naturopath ordered and that helps with my knees and hips.
If possible I'd recommend starting with food and seeing if your can find your intolerances. My boyfriend quit grains and was able to go off some of his arthritis meds. everyone is different and its a long drawn out experiment with a lot of label reading but it's doable. Eliminating foods that cause inflammation in your body will help lower your overall pain levels. Every little bit counts. If something helps 1% keep it up because a lot of 1%'s can add up to substantial relief.

Nov 02, 2016 9:06 AM

Oh i forgot weather change. Change of season and storm fronts are evil. The only thing you can do is try to ride it out when that's the cause of increased pain and problems. I find i have to lower the intensity of my workout but i still make sure i do it. Keep warm and try to remember it'll pass eventually when its weather caused

Nov 02, 2016 3:20 PM

It sounds like you have tried everything. So sorry to hear everything you are enduring; happy to see you fighting through it.

Have you considered SCS surgery? I am researching and asking others about it - it seems like it is a final straw and works in 80% of patients

Nov 02, 2016 4:10 PM

I really like the idea of dividing symptoms.
I barely managed my brain fog today ... I would say with my stress increasing that my brain is not on board. So that would be my trigger ... This month.

Japanese mint oil that sounds good. I agree epsom salts baths are helpful.

Definitely eliminating sensitivities to food is helpful. There is a basic elimination diet and then you introduce back things one at a time.

I'm not sure if the cbd oil is helping ... Hard to tell in the middle of a flare.

And now I am going to think of star wars Lego ... I love Lego,it makes me ocd and happy.

Nov 02, 2016 4:20 PM

Stress will definately make the fog worse. If i didn't have my 'paper brain' i would be screwed. i wouldn't remember anything if my phone didn't beep and tell me all the details

Nov 02, 2016 9:13 PM

Sezzy- CFS/ME are the same thing, Chronic Fatigue is used just because Myalgic Encephalomyelitis is bloody hard to say.😊

Nov 03, 2016 12:13 AM

Jahmac I thought that was the case and it is hard to say!! 😂

Nov 03, 2016 12:24 AM

Gotobef thank you for the info....I am going to try and research if there's any Naturopath's in my area and what they charge. I'm also looking into acupuncture as I feel the might help with the pain.
How would I know if I had any food iintolerances? I don't feel bloated or anything else like that!

In the blood tests my doctor wanted she has requested HbA1c, fasting glucose levels, magnesium, vitamin D and a full blood count (I'm not sure if there was more...bad memory! ). I had the blood tests Tuesday so I'll check Friday if they have the results back yet.

I've just started with Epsom salt baths, I'm having one a week atm as I'm not sure how many I should be having in the week plus I prefer a shower!

Nov 03, 2016 12:33 AM

One of the doctors in my surgery prescribed me diazipam a few weeks back for my anxiety. I took one the other night when I was super stressed out after the argument with my dad it helped me to relax a bit so I could sleep.
The last couple of days I've felt really tense and in a fair amount of pain so I took one last night and slept from 9pm 4:45pm.....that was an amazing but I'm still soo tired!!!

Nov 03, 2016 12:47 AM

I love adult colouring books I find them relaxing and I also like building my daughters lego but she rarely let's anyone else play and build with it!

What sort of stretches should I start with? that sounds like something that will help with some of the muscle pain i have

Nov 03, 2016 12:52 AM

The only symptom i get with eggs is increased overall pain. no bloating. The only way to know is to eliminate it from your diet for close to a month and then slowly start adding things back in at a maximum rate of 1item per week.
There is an IgG antibody test that the naturopath can do but it's expensive and not really accurate, but it'll give you a starting place.
If you can maybe find a dietician too. the one i saw added things to my elimination diet that i didn't think of that are not the most common allergies. And it turns out i react to those too.

The epsom salt baths i hear different things on. I've heard 20 minutes minimum 3x a week. I've heard every day. Personally i tend to forget i have a tub until i complain about my knees and hips and the boyfriend asks when my last bath was. Sometimes I soak in the tub then shower after to wash my hair, i get sever pain if i get water in my ears so i refuse to get my head under water.

Nov 03, 2016 12:57 AM

I'm breaking down your info into little bits that are easier for me to remember ask about...

Nov 03, 2016 1:15 AM

I like the idea of breaking the symptoms into smaller more manageable groups rather than looking at the whole condition which as you said is overwhelming

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