Pain and no help : I was wondering if... - Fibromyalgia Acti...

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Pain and no help

Fmcr profile image
Fmcr
35 Replies

I was wondering if anyone can help me please I have the worst pain in between my lower breast bone and my ribs on the right side It hurts so much the breast bone seems to be sticking out at the bottom. All I was told off the doc was "it's muscular" am now thinking about changing my doc cause the doc won't give me a script for pain killer's. She actually accused me of being addict. She said paracetamol should be strong enough pain killer. I also have had my sleeping tablets taken off me, even though they were working. But this new pain in the middle of my chest is leaving me in pain and breathless.

35 Replies
Blue-52 profile image
Blue-52

it sounds a bit like Costochondritis, where a tear happens on your tendons, it’s very painful and very common with fm, pain killers don’t generally work, the better for thing you can do is rest, and try not to use the muscle in that area, and breathe slowly, try heat if you can tolerate it on that area. I feel for you, it’s very painful

Fmcr profile image
Fmcr in reply to Blue-52

Yeah I looked that up and I said that to the doc but I was told there was no way it couldn't possible be that. Am starting to get to the point of just getting a new doctor or just end everything. Am so depressed and I haven't slept for 4 days now.

Blue-52 profile image
Blue-52 in reply to Fmcr

get yourself a new doctor, this one doesn’t have a clue, especially if you are stressed and suicidal, don’t do anything silly, speak to the Samaritans, talk to anyone, but this is just another blip that is set to challenge us, definitely look for another Gp tomorrow and make sure you get one that understands you, also if you get desperate reach out to the mental health crisis team in your area.

It’s really hard, but talk to yourself, try and use your mindset to challenge your brain, try to relax. Cry scream and keep on telling yourself you will get through this. I’m so sorry things are so bad. Take care of yourself.

Fmcr profile image
Fmcr in reply to Blue-52

Yeah my pantner is telling me the same thing, he's never off the phone to me to check am ok. It's just hard that's all when the doc won't do anything then cause u ask for things that u no helps I get called an addict.

Blue-52 profile image
Blue-52 in reply to Fmcr

that’s when you know to change your Gp, and find another, we are not addicts, we are in pain, we just want some help and understanding, so tomorrow get your head in gear, take a deep breath and get out there, or online and get some help from another Gp, you can do this, you can be stronger than you think, it’s just mind over matter, but that takes time.

When you have found the right Gp, get them to refer you to the pain clinic, the doctors there have much more say about your medication, including sleeping tablets, they can overall the doctors, and prescribe you what you need. And the doctors have to prescribe the medications, they overall the practice manager who stops and tells drs what they can provide, so don’t give up hun, I’ve been there and I’ve come out the other side, thanks to the pain clinic and believe it or not my Gp, she knew the clinic could over ride her manager, one day at a time.

Suffering2021 profile image
Suffering2021 in reply to Blue-52

hi there , ring 111 if you’re breathing is not good and you’re worried . Massage , cupping & acupuncture is really helpful if you can . Good luck . It’s really frustrating being in chronic pain but there is help , everyone is different , I found the medication did not do a thing to help I was like a zombie . Under a pain clinic now .

Sparklingsunshine profile image
Sparklingsunshine in reply to Fmcr

I'm sorry but your doctor sounds awful, I've had sleeping tablets on prescription before when my insomnia was bad, I know you normally only get 7 days worth as doctors think they are habit forming. What they fail to appreciate is there is a medical reason for Fibro insomnia, we aren't taking heavy duty sleeping meds for a laugh. Or because we're a bit stressed.

Our central nervous system is hyperactive and hypersensitive, meaning we dont switch off like non Fibro patients. Insomnia is one of the most common symptoms affecting us Fibroees. I read 90% will be affected at some time.

In any event even if she's not happy with you taking sleeping pills she should have offered an alternative, like Amytriptyline. I get Promethazine, a sedating antihistamine, on prescription. There are lots of meds which can help with sleep.

And as for pain relief then again, how awful, how can she know what your pain level is, we lack the technology to jump into other people's bodies. I dont know if you can take Ibupfofen but you can take it with paracetomol, as its an anti inflammatory, not a true painkiller. Chemists also can sell certain strengths of co codamol otc. The codeine can be effective, again if you can tolerate it. There are also the Voltarol and Ibuprofen gels you apply to the skin. Which can be helpful for muscular pain.

I would really consider asking to see a different GP or changing practice. She's not sympathetic or empathic.

Fmcr profile image
Fmcr in reply to Sparklingsunshine

I can't take ibuprofen or anti inflammatories cause I have an inflamed stomach lining and get lansoprazole and peptic for that. I can't take amytriptyline had it b4 and it made me feel suicidal so I'll never get that again.

Sparklingsunshine profile image
Sparklingsunshine in reply to Fmcr

There are lots of pain meds out there. I'm in the same boat, I had an anaphylactic reaction to a painkiller I'd taken for years one day, just out of the blue. No idea why. I was told not to take NSAIDS again. I'm extremely drug sensitive, I have been diagnosed with vestibular migraine and am currently on my 6th preventative migraine medication. In 7 months.

Just cant find one that works and I can tolerate. I totally get where you are coming from with Amytriptyline. That was one I tried for migraine. I hated it as well. Much of the problem with Fibro is trying meds until you find ones that work. Its trial and error.

Sparklingsunshine profile image
Sparklingsunshine in reply to Fmcr

Could you use the gels that you apply to the affected area. I found the one containing Voltarol pretty good.

CheetieCat profile image
CheetieCat

Hi Fmcr, so sorry your GP is definitely not the one for you, time for a change asap! Agree with all the great advice you've had from everyone, just a little caution regarding anti - inflammatory gels like Voltarol, if you're using them you can't take anti inflammatories like Ibuprofen at the same time. Really hope you get some relief soon x

Blearyeyed profile image
Blearyeyed

It does sound like costochondritis and you can get it with many different chronic health problems at any age . It's an inflammation in the cartilage area between ribs . It can be very painful and sometimes the pain can be so strong that people feel like they are having a heart issue.As Blue 52 said , unfortunately, paracetamol is likely to be your only option for this as you cannot take NSAIDS or ibuprofen.

It can take months to clear and you need to use heat pads and breathing exercises for relief.

Drinking more water each day also helps to reduce the inflammation and promote healing.

It is also recommended for you to sleep on your back with your head , neck and shoulders raised on supportive pillows to reduce pressure on the ribs and improve night breathing.

Sleep is also important so I would request to be put back on your previous sleep medication, even at a lower dose , or request a written explanation from the Practice about what medical reason they had to remove it. It's surprising how quickly they reverse a decision when they are asked to supply proof that could be used in legal action against their decisions.

No doctor should make you feel worse than you did when you entered the exam room , even if they cannot do much to help you.

If your doctor does make you feel bad for requesting help it is often because they know very little about the illnesses you suffer from and are trying to avoid admitting they need help to treat you.

You do need to put a complaint in to your Practice, get your partner to help you to do this politely but firmly if you don't feel well enough to do it.

Request a new GP with working knowledge of Fibro and any other health issues you have and a referral to a specialist if you don't have a full diagnosis or a care plan .

You aren't alone , so if things are getting you down do keep posting , we are all here to listen and support you.

Fmcr profile image
Fmcr in reply to Blearyeyed

Thank you for your reply. My partner and my self sat last night and wrote a letter to the practice manager of my doc surgery, we think we have been fair and asked fir a second opinion and not just pointed the finger at the doctor I seen. I didn't know I could ask for reasons as to why I have been treated like this. My partner thinks it's best to try and resolve things with the doc 1st before having too goto the trouble of getting a new GP and all that goes with that.

Blearyeyed profile image
Blearyeyed in reply to Fmcr

If there are more GPs at your surgery and you are happy to see others you don't need to go to the trouble of finding a new practice.I have one GP I definitely never see at my practice because of the amount of misdiagnosis and bad prescribing I had with him.

An internal complaint to the Practice Manager is a good option , you can just ask for a second opinion without a complaint , but in your case the complaint is warranted.

And yes, you have the right to question any part of your treatment , reasons why drugs have been withdrawn , reasons for them not doing tests you request and the reason they do not refer you to a specialist department if you request it.

You also have the right to request copies of all your notes and letters .

I always request copies of my test results and letters from consultants to ensure I am getting the recommended treatment I discussed with the Specialist and to see if my " normal" test results are actually borderline and require better self care on my part or further investigation.

It's a pain with a chronic condition that you shouldn't really have but until you get your GPs well trained getting the right treatment can be a full time job.

Have you been offered a replacement for your sleep medication or other forms of pain relief like Pregbalin, Garbapentin or Duloxetine?

Fmcr profile image
Fmcr in reply to Blearyeyed

No I wasn't the doctor just said that the practice no longer is prescribing any sleeping pills and the tablets I get get for pain relief is tramadol but I have to take 4 a day and no more even though I have no liver problems or other problems with blood results she said 4 is plenty and believe me it's not, I can't get out of bed most days and I'm just in pain constantly. I move about bedroom and living room slowly cause I know staying in the one place all the time isn't good for me and can cause other problems but when moving gets me so breathless and it hurts I just feel why bother living. But am getting help with those thoughts.

Blearyeyed profile image
Blearyeyed in reply to Fmcr

They are having a huge crackdown on Tramadol use at present , it's the new big thing.I don't take it very often because I find it only helps with certain types of pain and I find the side effects to much at higher doses but it was still on my repeat. I got a letter about Tramadol saying it was being reviewed for everyone.

They suggested taking it off my repeat and I pointed out it was still on there so I didn't need to waste time and a GP appointment every time I needed a repeat . This was agreed but they took it off anyway which if course caused an issue and delays when I needed a script. Point proved , it's now back on.

If you are feeling depressed and suicidal and you can put your sleeplessness specifically down to them withdrawing your medication you do need to complain about this.

If your sleeping medication is still available as a prescription drug under NICE guidelines in your area your GP surgery cannot simply decide to stop prescribing it to you just because they don't want to prescribe that drug anymore. You can check if the drug is still being prescribed in your area of the UK by putting into Google the name of the drug and NICE guidelines , you'll get a link about its use.

If they do decide to withdraw a medication they are also meant to give you time to taper off it and can't stop it " cold turkey" as this can actually damage your physical and mental health . That behaviour is a type of malpractice.

If they want you to reduce Tramadol they also have to give you time to taper down the dose and begin to help you trial other alternatives so that you get a similar or improved level of pain management whilst reducing the use of opioids.

If you can prove your pain level is worse and your quality of life effected by their decision they need to return you to your previous dose or increase it if that is allowed under NICE guidelines and refer you for more specialist help from the pain clinic , especially if you have had tests which prove that using tramadol isn't damaging your physical health.

Again look up NICE prescribing recommendations for tramadol for your area.

Print off the information on each of your drugs , or others you have researched that you would try and read it off to them . At the end of the day , whatever they may want to try as a practice they are the rules they gave to follow.

Have you been referred for any mental health therapies like CBT or Mindfulness training ? These can be really helpful and if you look on NHS direct you can follow links to recommended free online NHS courses with shorter waiting times than getting access to local services.

You may also find a Pacing Yourself for Pain Management Physiotherapy course will help to , you should have some form of that type of physio in your area and you can either be referred by the GP or check the local physio site as they are often by self referral. This includes breathing and relaxation exercises which could help with the breathlessness you are experiencing when you begin activity.

Hope that helps

Fmcr profile image
Fmcr in reply to Blearyeyed

Thank you so much my pantner and I will definitely look into the information you have given me also am very grateful for your help. I honestly didn't know I was allowed to to do the things you have mentioned. Hopefully we'll be able to get enough information and I'll be able to get the I need.

Fmcr profile image
Fmcr in reply to Blearyeyed

Sorry to ask but am having trouble trying to find out about the sleeping pill and tramadol issue am having on line, am not sure I'd am looking in the right place or not. Am in the Wishaw area North Lanarkshire and I have no clue where to start looking fir the information I went onto the NICE guidelines page and either my brain fog is really bad with lack of sleep or am just stupid but I don't know how or what to search for. I was wondering if your able and well enough to help me with this it's just feels like a big mine field I can't find a way out of.

Fmcr profile image
Fmcr

I just want to thank everyone who helped me its been a bad few weeks I am trying very hard not to let the doctors attitude get to me, but it's hard I have been feeling suicidal but I'm getting help with that. All I want is to be out of pain for longer that 2 hours and be able to sleep. While I understand the NHS is breaking under the pressure of the last 2/3 years and the cost of drugs has probably went up as well, I also think I didn't cause the pandemic so why am I being treated like a burden on people. Anyway thank you for taking the time and your kind words. Sending really gentle but big hugs to everyone.

KytttyKatt profile image
KytttyKatt

I find that a hot water bottle can help

Mrspainting48 profile image
Mrspainting48

I really feel for you.....Through covid .I saw no GPs.

In the end i reported the surgery for neglect.....a GP came to my home.....he would only discuss two problems .

He said he only had 15mins ....

I am and have been drug intollerant for over 20 years.....

But......I asked in those years are there new pain relief I could try.... Anything for a minute restbite....

But no I was offered what I had taken before that caused not nice side effects..

I have Rhuematoid....Oesteo...Fibromyalgia...and developed Lymphedema....

At the start of covid....i was coping.

I drove my car ...I dressed....I cleaned my home I cooked.....I had a life..

Neglect has put me housebound.

My life is bed wheel chair. .toilet.....my arms and hands are debilitated with Oesteo and Fibromyalgia....

Before covid I needed my ankle fusing.

Knock on effect to me has been devastating.....now back under Orthopedic conslutant....who thinks I am a high risk for surgery and could lose my foot so going through assorted scans..before Consultant will commit..

I even though i keep asking ...am still without pain relief...and pain level is extremely high..... So is my swearing in private.......

My thoughts if you can get a new GP get one.....but make sure they know and understand your needs.....I left a really excellent GP ...to move here.....

They are out there ....

Don't give in and think as many do.

Its your body you do have choices...

Thank you...

My thoughts are with you and the thousands of others who also feel alone and neglected and uncared for....

1whitestar profile image
1whitestar

Would you be able to get a second opinion or see a different doctor. I get pain I'm the rib from fibromyalgia.

Woodhouse16 profile image
Woodhouse16

Definately costochondritis had it many times before myself and yes very painful. A chiropractor i went to showed me some stretching the ribcage open exercises to do and apply heat too afterwards which since then touch wood i havent had any more bother with it. Can be quite scary too as often can be mistaken for heart attack i know ive read of many people thinking its that but as said it is quite common in fibromyalgia sufferers. Plenty of water to drink too.

JazzElvis1 profile image
JazzElvis1

Yes it sounds your back and front ribs are sublaxed, that’s stuck, does it feel like a burning pain? My pelvis was out of alignment and caused my ribs to change too, chiropractor bought this back to normal some sessions, and pain went , every so often it happens and I need another adjustment, hope that helps x

Fmcr profile image
Fmcr in reply to JazzElvis1

There is no burning just feels like I've been punched from the inside. Also I can't afford chiropractic fees its only my partner that works. But thank you for responding.

Wobblygirl profile image
Wobblygirl

Just reappearing aftr another bout of costochondritis. It's v frightening at first except now I recognise the pain!It's complete rest with heat and supportive pillows and some gentle stretching...

Moving is hell but important!

However, going to the loo was such an inconvenience??? Even though drinking more water is essential.

Is there an easier way? Not sure if a bedpan on a temporary basis might be the answer??? I just abt managed but it's such an ordeal to get up+out of sorted position of warmth...

My Dr suggested Voltarol but I couldn't reach/twist! And I live on my own...

Original diagnosis came from Dr who was not my GP and she pinpointed areas+I screamed!

I think it's def possible to diagnose costochondritis with pressure and I was grateful 4 her knowledgeable support.

It can sometimes feel as though breathing is painful too which is alarming indeed? Also large meals were 2b avoided!!! I now eat much smaller portions because the fear of difficult digestion and try+walk around aftr eating (only round the house!)

I've bn ill for 10days with a virus affecting my brain and because of dates all medical agencies were closed so terror reigned as I obv thought I had a brain tumour!

I do understand yr terror with costochondritis.

I don't mean to digress but share how distressing all these extra conditions are...

It's scary being so ill on top of fibromyalgia and yr Dr is so unsupportive; it sounds horrendous???

Today is the first day I can see straight so I hope my commiserations on here can help a little?

Yr partner sounds great.

Take good care now X

Fmcr profile image
Fmcr in reply to Wobblygirl

My partner is is the best guy in the world and I couldn't be without him.

Wobblygirl profile image
Wobblygirl

You're v fortunate indeed.Mine is OK but you have to tell him exactly what to do!!! Then he's good...

And when I'm ill I don't always have the strength to be that clear...

Clarity goes out the window with pain, don't you think???

Fmcr profile image
Fmcr in reply to Wobblygirl

Very much so I totally agree. But even when I try to explain what I need the doc just rolls his eyes and says the usual thing paracetamol will help with everything. Or you don't need anything more or nothing can be done.

Sarahvit profile image
Sarahvit

Hi Fmcr, sounds like you have the doctor that my sister set me up with when I first moved to South Carolina. The first thing she said to me wasn’t “hello how are you?” Or “I’m doctor so and so” it was “I don’t prescribe pain pills.” Needless to say I switched doctors. She had no compassion for me. She did send me to a pain doctor who said the treatment for fibromyalgia is pretty straightforward and that she should prescribe pain meds for it. I recommend you switch doctors. Yes costochondritis is common with fibromyalgia. I’ve had it in the 90’s but not since then. I was on Celebrex for years but about 4 or 5yrs ago had to stop because it was effecting my kidney function so got of it. My kidney function has improved but is still borderline. So need to watch out for that with anti inflammatory meds. I wish you luck in finding a good compassionate doctor. Maybe someone on here that lives in your area can recommend a better doctor. My thoughts and prayers are with you. 🙏🏼💕

KimiJay profile image
KimiJay

Sorry for your pain. As a result of seeing posts on here about it I've self diagnosed Costochondritis after googling info on it. If it is really unpleasant I resort to rubbing on some Voltarol and that helps no end. I've been twitching my shoulder for weeks which I thought was Christmas stress but went out and did some pruning on the back hedge in the sun. today. Sort of helped during the rest of the day - maybe with circulation. Going to bed in about an hour so am going to rub some voltarol on then. I'm thinking rest and occasionally flex. Good luck.

Bakery40 profile image
Bakery40

Hiya Fmcr and I'm very sorry what you are going through. I fully agree with Blue-52 , it does sound like Costochondritis. You better have it checked it out with a another doctor or go to the walking centre. I had it a few times, one bad one after chest infection and I end it up in A&E. When the doctor pressed on my breastbone I screamed from pain 😭. I was told to take ibuprofen. It is very painful. Hope you see someone who will help and support you. Good luck and take care 🙂.

Gavin79 profile image
Gavin79

hi Fmcr

I’m sorry your having to go through this with out fail change your GP they swear an oath not to do harm. But leaving someone in pain is causing harm. This unsympathetic response from GP’s seems wide spread and a total lottery wether you see a dr that cares. I’ve had this issue myself. And there’s nothing worse leaving the drs feel worse than when you went in. Your not alone and even though I can’t take away the pain. For me just knowing someone dose understand helped me and mental heath. You can get small heating pads that don’t cost very much electricity to run and aren’t expensive to buy. If your not sleeping that’s going to make things so much more worse. Being in a routine and getting good quality sleep makes a massive difference. It wasn’t till I was prescribed pregabalin from the pain clinic that I started sleeping better. I even started dreaming again after not having a dream from over three years I dream every night now. It had a knock on effect that I wasn’t in as much pain in the morning which was always the worse time for me. Eating and drinking well and generally trying to take care of yourself both physically and mentally. Try if you can do things that you enjoy

But first job is to find another GP that understand you and and actually cares. I went through a time of being suicidal it wasn’t that I wanted to die. I just wanted the pain to stop. Ask to be referred to the pain clinic asap. It’s not good enough to send you away with no option or plan of action. Try see a younger GP there more likely to have had fibromyalgia training

I hope you can get some relief all the best x.

Fmcr profile image
Fmcr in reply to Gavin79

Thank you, we've decided to put a compliant into the surgery management and if we get no response or a satisfactory outcome then we're changing doctors.

Gavin79 profile image
Gavin79

good luck 👍🏻

We shouldn’t have to but keep pushing ! you deserve better

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