Pain pain go away

[Pixie74]

It’s 5.04 am and hardly slept a wink.. in so much pain between my shoulder blades plus suffering with frozen shoulder and now have sciatica... will I ever get a break from any of it.. I’m sat bawling my eyes as no pain medication is helping and to top it off my anxiety and mental health is suffering 😢😢😢..just totally feel like giving up

[Aaaaa-]

My twin ...... I have no answers (20) yrs. just letting you know that you have someone that can totally understand what your going through ! 😩 fibro, RA, hearin, sciatica, no sleeps , acid reflux and you name it. No one believes you could possibly have this many things going on. I can’t believe it. Makes life so lonely.......

[Billyboy2u in reply to Aaaaa-]

Again keep at your GP. If you get no resolve tell them your going elsewhere and informing the medical board. There is something out there that will help you.

[desquinn Partner Volunteer FMAUK Trustee in reply to Billyboy2u]

The escalation from not having a management protocol that is helping you to complaining about your GP is not and should not be a knee jerk reaction. If the GP is not working with you as a partner then consider seeing a new one at the practice of course.

But, the GP not having an answer for our pain is not their fault. They are not the enemy. There are options for people with fibro and paths to take to see other specialists but there is no quick fix and pain killers are certainly not the only answer and definitely under deliver a lot of times.

Moving from one GP to another in the wrong way can compromise your future care as well so do things right, patiently, politely, and professionally. We only hear one side typically on here but a GP will typically start with blood tests and rule things out and once they suspect fibro they will start you on amitriptyline. There is no standard care plan for a fibro patient.

But, referrals to rheumatologists and pain clinics are possible. But unfortunately they take time and it will take time to find what works for the individual.

[harmony2 in reply to desquinn]

Very well stated. This is good feedback. Please don’t burn your bridges. At your go ask what protocols exist and how you can get on one. Your regional clinical commissioning group will have written protocols for Fibromyalgia. Also, I believe NICE does if you’re in the UK. But it’s true no quick and no total fixes. You sound overwhelmed and we can be buried at such times. Do call someone you can trust so you aren’t holding this yourself. Or call Samaritans if no one you can trust. And keep showing up here. As I hope you see that people will show empathy and give you honest, helpful feedback.

[desquinn Partner Volunteer FMAUK Trustee in reply to harmony2]

thanks for the comments but just to add there are not NICE guidelines on fibro but there are on chronic primary pain. The lack of national guidelines that there is a lot of variation around the UK

[harmony2 in reply to desquinn]

Thank you for the correction.

[Midori in reply to desquinn]

Also, referrals to specialists are way behind because Covid has gotten in the way, so please cut your doc a bit of slack.

[Leemccluskey in reply to desquinn]

The only problem with what you say is that there are many GPs who simply don't believe Fibromyalgia exists or that its all in the mind. Sadly there are also many consultants who dont believe in Fibromyalgia and who will rule out other conditions and then simply imply without saying as such that you are making up your pain or you are depressed. I have changed doctors practices twice and when you first change doctors as a new patient I find that the new surgery bends over backwards to help you and will get you referrals really quickly. However they do send you for all the usual tests and every consultant except the rheumatologist until the very last.

I have also seen everyone of the 6 doctors in my practice and after 14 months am only now being referred to a rheumatologist. I have even had one doctor send me for a hiv blood test, pancreatic cancer blood test, liver cancer blood tests which are not called pancreatic or liver cancer blood tests but that is the description of what these blood tests are used to detect. I even tested positive in the anti nuclear blood test (ANA) but it was non specific so the doctor says he cant understand whats going on with me and said leave it with him over the weekend to think about!!

Eventually he asked me could I be depressed as that could cause pain. I nearly swore at him and said I'm not depressed but I am getting there and if the pain gets any worse depression will be the least of my mental health concerns.

I have now got swollen lymph glands in the neck that the doctors told me to go to the dentist but the dentist said there is nothing dental going on. I insisted of being referred and was given an ultrasound which showed up enlarged lymph glands that are significant but was told they didn't think they were anything to worry about because they had fat content in them which usually suggests they are benign. I was asked to have a repeat ultrasound after 3 months by which time they should of reduced to normal size but after 3 months the 2nd scan revealed one of the lymph glands had reduced by 1 millimetre and the others were the same size. Then they said again I don't think they are anything to worry about because they are stable and are not growing.

Then I had a ct scan of my chest and abdomen which found significant size lymph nodes in my chest and even bigger ones in my tummy but again I was told they didn't think they were anything to worry about and would repeat the scan after 3 months. I had the repeat ct scan and the lymph nodes had stayed roughly the same. One had reduced by 1mm in the chest and another had increased by 1mm in the tummy so was told they are all stable.

Now I am being told swollen lymph glands are a symptom of fibromyalgia or ME CFS and that a positive anti nuclear antibody blood test could also be a sign of ME CFS or even Fibromyalgia.

I had to go privately to see a rheumatologist as there was a twelve week wait for an NHS one. I paid £150 and he wrote to my doctor requesting blood tests to save me money as the different blood tests he wanted were priced at a minimum of £79 and some were over a £100 privately. All in all I ended up have blood tests that would of cost me over £500 and in the end the blood tests were all normal.

I didn't go back for the 2nd appointment as I wasn't going to pay £150 to be told that the blood tests were normal which the receptionist at my GP surgery told me that my GP had reveiwed the results and had send a copy to my private rheumatologist.

Now I finally have a face to face NHS rheumatology consultations next Monday at 9am which is going to be a killer for me because I can't usually get out of bed with the pain until 3pm and I am so tired having only had 20 minute bursts of sleep over the previous 15 hours.

No doubt I will have to have numerous blood tests all over again but they can take as much blood as they like as long as they finally give me some diagnosis. I just wish they would take the blood and do every blood test possible at the same sitting rather than have me go for blood tests six different times.

Sometimes it takes all my willpower to not just say oh I forgot I had an appointment today because I just want to turn over and try and get more sleep

[desquinn Partner Volunteer FMAUK Trustee in reply to Leemccluskey]

doctors not believing in fibro does not affect my advice as you need a partner that will work with you and as long as they do that then great. But shouting and arguing with your GP means that relationship is over (and may damage your future care) so therefore not worthwhile.

"I even tested positive in the anti nuclear blood test (ANA) but it was non specific so the doctor says he cant understand whats going on with me and said leave it with him over the weekend to think about!!"

its disconcerting to hear I am sure but I would appreciate that honesty. He may consult with other gps or papers and come back to you but this is a positive for me.

"Eventually he asked me could I be depressed as that could cause pain. I nearly swore at him and said I'm not depressed but I am getting there and if the pain gets any worse depression will be the least of my mental health concerns."

This is factually correct and may have been appropriate.

[Pixie74 in reply to Aaaaa-]

I don’t think I can cope much longer with it it’s getting so unbearable.. I just want to scream and cry 😢😢

[Cleggt in reply to Aaaaa-]

I believe you.

[Billyboy2u]

Try and keep positive keep hammering at your GP.

I’m on ZoMorph don’t know if you’ve tried them but I find there a god send.

[Pixie74 in reply to Billyboy2u]

Thank you for replying.. I’m currently on tramadol and naproxen plus codeine to help but nothing seems to be helping.. it’s frustrating

[CheetieCat in reply to Pixie74]

Sorry for butting in but just a thought. Naproxen did absolutely nothing for me, changed to another NSAID and felt an improvement 🤷

[Pixie74 in reply to CheetieCat]

I’m gonna be speaking to my gp tomorrow cos nothing seems to be helping 😢😢

[CheetieCat in reply to Pixie74]

Good, hope you get some relief soon. I've added a link for you - this guy's really good, I've used a lot of his exercises youtu.be/-I-mZbyA5Dw(Not working as expected?)

[Pixie74 in reply to CheetieCat]

Thank you so much will have a look

[LisaSnow FMA UK Volunteer]

Just sending you a gentle cyber hug. Have you put a heating pad on your shoulders to see if it helps?

[Pixie74 in reply to LisaSnow]

Thank you, I’ve used heat pack ice pack anything that has been advised but nothing is helping.. cyber hug was welcomed 😢

[Yassytina FMA UK Volunteer]

I am sending a hug as rotten to be struggling and people here totally understand how you are feeling , I agree plug away in getting your doctor to listen and if he/she are not available, ask to see practioner nurse , my practioner nurses at my surgery are brilliant as they can prescribe meds and seem to have more time on appointments to listen as well. So do ask when phoning hang in there and let out really how you are feeling right now , get you moving forward gradually xxxx

[Pixie74 in reply to Yassytina]

Thanks for replying.. I shall contact my dr tomorrow morning.. I’m sick and tired of feeling like this.. feels like someone has a voodoo doll and is continually stabbing at it😢😢

[Hazel_Angelstar Administrator FMA UK Staff]

Sorry to hear that you are struggling so much.

Perhaps you need to have a pain review with your gp (or other health professional at surgery) to discuss whether there are other options you could try.

Perhaps a referral to pain management if gp feels they are out of options.

Have you tried non - med options such as heat /cold, Epsom salt baths, tens machine etc that may give some short term relief

[Pixie74 in reply to Hazel_Angelstar]

Thanks for replying.. I’ve tried non med approach but didn’t help one bit.. it’s so frustrating especially when you have so much to do.. I’m trying to pack my house up as I’m moving.. my daughter is doing as much as she can but she works full time and my son lives miles away and works so his time is limited.. 😢😢

[Billyboy2u in reply to Pixie74]

Remember your GP should have an out of hours doctor or locem. Ring them today if your that bad. That’s what they are there for.

You didn’t say if you’ve tried ZoMorph? It’s a slow release but b****y good. (edited by admin ) A pain specialist can try different meds the mix and match approach. You will find something.

Even though a lot still believe it’s in your head.

[Pixie74 in reply to Billyboy2u]

Sorry I haven’t tried zomorph so maybe it’s worth mentioning it to my gp.. I may call out of hours cos I’m literally struggling so much and it’s so unbearable.. thanks for your advice much appreciated

[Billyboy2u in reply to Pixie74]

That’s what it’s there for mention the ZoMorph the the out of hours doc. He’ll give you a few until you can see your GP.

[Hazel_Angelstar Administrator FMA UK Staff in reply to Pixie74]

Strong opioids are generally not recommended for fibromyalgia pain, and it is unlikely that a gp would prescribe on request

[Pixie74 in reply to Hazel_Angelstar]

I’m currently on tramadol and naproxen but I do have other issues going on..

[Dizzytwo]

Hi there, its hard to think straight at time when we suffer with chronic pain. I've had it for 40 yrs now so can totally understand.

When was the last time you saw or spoke with your GP? If its been a while maybe now is the time to update them on how you feel.

Anxiety and stress can push our pain through the roof thats for sure. I suffere from severe anxiety amongst other chronic pain problems. One thing I've learned is the more I think about my pain the worse it becomes.

Distraction is the thing that helps me. I have to keep my mind busy and active. Even if I cant keep my body so active.

I would call again to speak with your GP. Sadly sometimes we think doctors are miracle workers. They are not. They can only give you what they have at there disposal. I am sure when they have run out of options they may feel as helpless as us.

No doctor wants to see a patient suffer its not what they trained for.

We also need to remember what medication works for one person will not necessarily work for everyone.

I myself take no medication. Tried it bought the tee shirt. Nothing helps me plus the side effects were more than I could stand. And yes I am in chronic pain also been a wheelchair user for over 20years.

I do believe having the right mind set is a must when dealing with any health problems. I found a year of CBT really helped me.

Maybe its something you could talk to your GP about xx

Momo

Ps you may not know you can lock your post to this community only for privacy reasons. Also locked posts tend to get more replies.

[Pixie74]

Thanks for your reply.. the last time I spoke to my dr over the phone was about 2 weeks ago but I shall definitely be calling them tomorrow cos I’m seriously fed up now.. I do try and distract myself but it’s so hard.. it’s just a vicious circle at the mo.. xx

[Skylane2]

Is it possible to see an acupuncturist? That has helped me tremendously but it could be the massage therapist that works with her. There are massage businesses like Massage Envy here in California that you might try. Take calcium and magnesium to relax your muscles, and get arnica gel or cream to rub on your shoulders!and back. You might get yourself a new bed pillow also. One that supports your neck. 😊💞

[Makie-Uppie]

Snap, I shall spare you the gory details but I'm in a similar boat. It's hard, really hard. You need to phone the doctor and see if you can get something better for the pain. Psin can put your heart rate up which can cause problems in it's own way. Take care.

Quick addition, caused by a scan of the other reply. I agree that the GP can only do so much, but talking with them and letting them know how bad things are can open up new avenues or ideas for treatment. I am dead (wish I was in a way) against overloading or shouting at medical people. Most of whom are doing the best they can. Get some of the idea gleaned from here and mention them your GP may not even have heard of them.

All I want is the guy that drove over me last night in a spiked steam roller(for the you ones, that's a machines that flattens tarmacadam on roads) banned from driving.

[Hidden]

Sorry to hear, you need some real pain meds. I can only sleep on my back now or my shoulders and arms go numb. It's very annoying, I have always slept on my side. I feel vulnerable on my back. Of course I have all kinds of pillows, chiropractic, neck, knees... I also always have a hot water bottle in bed for back pain.

[Cleggt]

Nothing I can say will take away you r pain, but I know exactly how you sre feeling , its horrible. try listening to the radio to distract your mind it might help. xx

[Zippy09]

Hi Pixie I’m sorry for your pain. A Frozen shoulder is enough on its own without anything else. It does take along time to go but be patient and try to distract yourself ie a puzzle game etc., I have been told many a times to not concentrate on our pain as it makes it worse. So if you can please try to concentrate on something else don’t let it beat you!! I wish you luck and hope your pain soon subsides 🥰

[Pixie74 in reply to Zippy09]

It’s been so painful and everything else is hurting.. I do try and concentrate on other things but it’s hard.. thank you for your reply 🙂🙂

[Sally444]

HI Pixie. I was like you a few weeks back and went back on my anti depressants (Venlafaxine) which seems to help me but as everyone mentions, we're all different. Have you tried a chiropractor. When my back and shoulders used to seize up, she was a miracle worker. You would need to find the right one as some are much better than others but they can show you how to relax your muscles at home when they are tight or in spasm. Stretching really helps my pain and perhaps try to pamper yourself. Make the sofa as comfy as possible (duvet, pillows etc.) get your favourite snacks and watch your favourite feel good film with some scented candles. I often find getting immersed in something helps me to forget my pain for a while. Wishing you some relief. x

[harmony2]

I see you are moving house. I feel worst when I forget to pace or I have feel too much to get done. I wonder if you feel that you cannot pace because too much to get done to move? Can you take breaks versus go for hours and ask for any help from friends /outside family. Can you ask your son to do set list of just specific heavy jobs that won’t take him long but would exhaust and hurt you worse setting you back? Tell them what you need. They may assume because you appear to be available that you’re able to do it. It’s humbling to ask for help but sometimes people surprise us. Praying for a miracle of help to come your way.

[ltsmagic]

I have the same Issue; I have Foam Roller next to my bed and I use it every time that I feel that awful pain.

[Canbedone]

Pixie74, so sorry A big but gentle hug from me too.

Some further suggestions. Pain tends to cause tension and tension becomes spasms that lead to knawing everlasting pain. You somehow need to break the vicious circle.

If you have a supportive partner then deep massage in the knots is often painful but relieves the spasm. Otherwise seek some physio from the Doctor. You need oil on you skin for enough pressure and no skin damage so I recommend Cocoa Butter oil. You can get it in Tesco and other places.

Direct treatment of a spasm also helps and that could be Voltarol (Diclophenac) and the doctor can prescribe you a double strength version. Good old fashioned deep heat can work and so too heat pads or a hot water bottle.

Muscle pain and weakness may emanate from blood disorders so get a full spectrum test. Pain can be amplified by the brain - it is real pain but there may not be an inflammatory cause and this is where anti-depressants can help. you don't have to be depressed.

Sciatica is because the sciatic nerve is trapped often via spasm or the nerve is not moving in its lubricated sheath. I found physio help me followed by exercise to keep it at bay.

Hope you find some relief soon.

[ShelWhitt]

So sorry you are in so much pain Pixie. I can relate and empathise, but unfortunately there are no easy answers. I have been suffering for over 30 years now, but am much worse over last ten years. I am 78 but that doesn't make anything any easier. My DH is also chronically ill with dementia, COPD, is barely mobile, plus other problems, as have I, buthe relies on me an awful lot. He does help where he can but I am the main carer. I find nothing much helps but my best friend is my hot water bottle and I also use ice packs. Try to stay positive! Sending hugs. xx