Struggling with daily life due to Chronic Pain

no.1swimmum

I am not really sure what I want to achieve from this other than others opinions and maybe some guidance of where to go/what to do next.

I have been suffering with chronic pain for at least 6 years, it is numerous parts of my body, feet, ankles, knees, hips, lower back, shoulder, elbows, wrists and hands - the strange things is I have periods of chronic pain in one area and then that will digress and it will start in another area. At the moment I am in incredible pain in my feet, right knee, lower back, wrists and hands. On top of this I am constantly tired as I don't sleep well, and subsequently am forgetful etc.

Approx. 30 months ago I was referred to Rhumatology & lupus following a positive lupus test. I waited 4 months for the appointment only to see a very dismissive dr. who basically told me at 49 I was too old to suddenly develop lupus and it must mostly be in my mind. He did agree reluctantly to do another lupus test but in my follow up appointment they could not find the result and refused to do it again. My third and final appointment in 18mth again told can't be lupus could be fybromyalga but that's not our problem, referred me for hydrotherapy and discharged me.

My pain is getting significantly worse as time progresses, I finally saw a GP at my practise who referred me to pain management, who again I had to wait several months to see, I have had one appointment with no follow up appointments made despite me asking for them. They did put me on Amitriptillin (sorry not sure of the spelling) and told to buy a tens machine. The medication is making me sleep but not taking the pain away and I use the tens machine daily on my back. I still have only had one hydro therapy appointment as they also say without a diagnosis they would prefer me to have physiotherapy.

I feel like I am bashing my head against a brick wall to get any help, I can not take a single step without being in pain, so I applied for a disabled parking permit but again with out a diagnosis that's impossible.

I have a doctors appointment on Monday - which I have waited 3 weeks for but I already know that this will be useless as its with a locum as my gp is on long term sick!!!

I have even considered walking out into the road and having an accident, in the hopes that this will get me some help, this is how desperate I am.

I am sorry for such a long post, and as I said not even sure what this will achieve, but my quality of life at the moment is almost zero.

helcat26

I am sorry for your situation.


NOT A DIAGNOSIS- my elderly father had similar problems getting polymyalgia rheumatica diagnosed.


I wished with him that we had paid to jump queues and go and see a neurologist privately. If you can pay for a consult do not put yourself through this waiting

teddysmum

I know what you refer to as my pain moves about, but is probably caused by my multiple herniated discs. (One of our GPs, whom I now refuse to see, said that neuropathic pain cannot move about and his comment made the neurologist I see laugh.)


You must be able to get lupus in later life, as I didn't see a neurologist until I was nearly 60 and had tests for lupus, ms and other conditions.


Even after eight years , the neurologist I see, now, is still not completely sure what causes it, but I have myoclonus (involuntary movements), which seem to be connected to painful areas in my back.


For these two conditions I have been tried on at least eight drugs. Some of these had no effect and some worked, but with nasty side effects, such as painful swelling, excessive weight gain or odd mental effect (on one case). The current two are fairly successful, though the dose has to be increased , after a while, so it's worth trying different ones.


It is difficult, but distraction does help with pain. It is also good to decide you are not going to let it beat you, as I've found it's too easy to give up on one thing, then another until you become depressed by what you don't do and have to give yourself a good mental shake to get things going again.

theoretica

I suggest you have an open mind about seeing the locum - the last one I saw was a very good thing.

Pop_Up_Pirate

no.1swimmum wrote: »

I am not really sure what I want to achieve from this other than others opinions and maybe some guidance of where to go/what to do next.

I have been suffering with chronic pain for at least 6 years, it is numerous parts of my body, feet, ankles, knees, hips, lower back, shoulder, elbows, wrists and hands - the strange things is I have periods of chronic pain in one area and then that will digress and it will start in another area. At the moment I am in incredible pain in my feet, right knee, lower back, wrists and hands. On top of this I am constantly tired as I don't sleep well, and subsequently am forgetful etc.

Approx. 30 months ago I was referred to Rhumatology & lupus following a positive lupus test. I waited 4 months for the appointment only to see a very dismissive dr. who basically told me at 49 I was too old to suddenly develop lupus and it must mostly be in my mind. He did agree reluctantly to do another lupus test but in my follow up appointment they could not find the result and refused to do it again. My third and final appointment in 18mth again told can't be lupus could be fybromyalga but that's not our problem, referred me for hydrotherapy and discharged me.

My pain is getting significantly worse as time progresses, I finally saw a GP at my practise who referred me to pain management, who again I had to wait several months to see, I have had one appointment with no follow up appointments made despite me asking for them. They did put me on Amitriptillin (sorry not sure of the spelling) and told to buy a tens machine. The medication is making me sleep but not taking the pain away and I use the tens machine daily on my back. I still have only had one hydro therapy appointment as they also say without a diagnosis they would prefer me to have physiotherapy.

I feel like I am bashing my head against a brick wall to get any help, I can not take a single step without being in pain, so I applied for a disabled parking permit but again with out a diagnosis that's impossible.

I have a doctors appointment on Monday - which I have waited 3 weeks for but I already know that this will be useless as its with a locum as my gp is on long term sick!!!

I have even considered walking out into the road and having an accident, in the hopes that this will get me some help, this is how desperate I am.

I am sorry for such a long post, and as I said not even sure what this will achieve, but my quality of life at the moment is almost zero.

This sounds a lot like me 25 years ago. I ended up getting 'diagnosed' after around 10 years with Fibro, ME then MS, and other bits and bobs.
I then went through painkillers and other meds and figured that was me for the rest of my life.
Pretty depressing, and that didn;t help.

Then, my husband was diagnosed with RA and he went downhill rapidly, in 2 months, and was in a worse position than me so, I started on a quest to find out why we were so ill.

What I came up with was FOOD!
What we eat in a 'normal' everyday diet is poisoning us (and we ate 'healthily with no take aways or ready meals etc)
I changed the diets drastically, which was hard at first but I was determined to get better.
We cut out carbs, sugar, gluten, grains, legumes, all nightshades, all dairy except butter, and we added missing healthy fats, added much more green veg and supplemented with good quality supplements the things we were missing.

Today, I have dumped all my meds as I no longer need them as has hubby. I still Ache a little but that will hopefully go over time.
We are both in remission and have never felt better.

As I say, it was hard at first but after two weeks we no longer craved any carbs or sweet foods and we no longer felt the need to snack.
That is due to eating more healthy fat.

Yes, its restrictive but it's better than living with illness, pain and a bleak future.

lessonlearned

Pop up Pirate - you could be describing me!!!!

But as well as the fibromyalgia I also suffered from IBS GERD and a duodenal ulcer.

Couldn't take any kind of painkiller because they would set my stomach off.

I had begun to suspect it was food and I had worked out that wheat was a problem but it wasn't until I saw a nutritionist that I learned the true picture.

Like you I cleaned up my diet. No grains at all, I'm ok with some nightshades and a bit of dairy but am very careful not to over indulge.

Yes it was difficult at first but the benefits far outweigh the inconvenience. I may miss the odd thing now and again butI don't miss how poorly I felt all the time. It's hard to feel "restricted" when once you start to feel well and regain your health.

I have truthfully never felt better.

FBaby

OP, you need to push on follow up care. You said they had lost your 2nd Lupus results. That's not good enough, and certainly not to then decide not to do a 3rd, so either they did find it and it came back negative the second time or you need to insist for it to be done again, or explained clearly why this has been disregarded.

You also need to be explained what other conditions has been considered. I assumed you had a number of blood tests, were you ever taken through the results of these? Did everything came back within the normal range?

The only way a diagnosis of ME or Fybro can be reached is when everything else has been disregarded, so your GP needs to go through the conditions they have disregarded because results came back ok.

You say you have trouble with your memory, so take the time this week-end to write every single questions you want answered and don't feel rushed. If your GP decides to refer you to yet another service, ask what the purpose of it is, what treatment they will provide and what would be the expect outcome. Good luck

Pop_Up_Pirate

lessonlearned wrote: »

Pop up Pirate - you could be describing me!!!!

But as well as the fibromyalgia I also suffered from IBS GERD and a duodenal ulcer.

Couldn't take any kind of painkiller because they would set my stomach off.

I had begun to suspect it was food and I had worked out that wheat was a problem but it wasn't until I saw a nutritionist that I learned the true picture.

Like you I cleaned up my diet. No grains at all, I'm ok with some nightshades and a bit of dairy but am very careful not to over indulge.

Yes it was difficult at first but the benefits far outweigh the inconvenience. I may miss the odd thing now and again butI don't miss how poorly I felt all the time. It's hard to feel "restricted" when once you start to feel well and regain your health.

I have truthfully never felt better.

I told my friend who had IBS about my research and she cut out carbs, grains and dairy, added fat and more vitamins/minerals and her IBS cleared up completely.

Diagnosis doesn't matter does it, not when you set on a road of healing yourself.

Glad you're feeling better too!

lessonlearned

Pop_Up_Pirate wrote: »

I told my friend who had IBS about my research and she cut out carbs, grains and dairy, added fat and more vitamins/minerals and her IBS cleared up completely.

Diagnosis doesn't matter does it, not when you set on a road of healing yourself.

Glad you're feeling better too!

Well I know you shouldnt self diagnose because of course you could miss something important. You still need to work with your Doctor.

But then I think it goes no harm to try a few dietary tweaks and see if it helps.

Fortunately my doctor was not the sort to pooh pooh dietary changes or complimentary therapies. He was very supportive and gave me lots of advice.

I know some doctors are a bit less open minded and just prefer to persevere with pain meds even if they aren't helping much.

Chronic pain is so debilitating. It ruins lives. I am just so glad that I was able to help myself by doing something as simple as changing my eating habits.

Obviously it might not be the solution for everyone, but it's easy enough to do, so I do think it might be worth giving it a try.

Ps last year I was diagnosed as type II diabetic. Changed my diet, cutting out all grains and starchy carbs, and now my blood sugars are back to normal.

Timpu

I'm in a bit of a rush but couldn't read and run. I'm really sorry to hear you're in such awful pain and struggling, my heart goes out you.

Unfortunately, when unwell you do have to fight for care, ironically, when you are least able to do so. Have you got anyone that can go to appointments with you? They can ask questions that would occur to you later but may not do in the heat of the moment (I certainly am like that). You need to chase every single option, which is knackering but somewhere down the line, something will help you.

Also, my close friend had a heart condition picked up by a locum that the regular GP hadn't picked up in years. One person cannot possibly know everything and seeing someone new isn't a bad thing always.

no.1swimmum

Thank you all so much for your replies, I have been really down lately, it is not helped by my concern for DH who has a heart condition, and also hasn't been well the last couple of weeks, I don't like to share my worries with him as I know that it won't help him.

I received a letter yesterday about my hydrotherapy appointment on the 21st February!!! so will need to ring them on Monday as I obviously missed it.

I have considered taking my Mum to the doctors with me but I am not quite sure that she believes how much pain I am in and is often critical if I haven't been able to do the housework, washing etc so I don't think she is the right person.

I am going to sit down and make some notes to take to the dr's with me, as I think that this might help.