Fibromyalgia Community
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Avatar universal

So much pain, so unhappy

i am constantly in so much pain, am under two different specialist, one for severe chest pains and the other for pins/needles in hands and feet, and am getting nowhere fast with either, all test done to date come back as negative, yet all the symptoms are progressing to the stage i now cannot walk without being in horrendous pain in my feet and hips, my body has started swelling all over but badly in my feet and hands, my who body feels tight and hurts, i just want to cry or sleep all the time, my gp looks at me like i am loopy and have given up going there as i got so down when they cannot help me, i will list everything that i have now from the 1st symptom to where i am at now

Pain in stomache (right side low down) scans have revealed nothig
Sore bottom (examinations have revealed nothing
Pins and needles in hands (test have revealed nothing)
Bad chest pains (x-ray showed some scarring, copd, but specialist now ruled out copd)
Increase in weight
frozen shoulder (physio helped as much as it could, not back to normal)
Pins and needles in feet (test have revealed nothing)
Memory is poor, forget my own name half the time
bladder weak and keep having accidents (although i think thats because i cant get there quick enough due to pain in feet)
incredible tiredness, to the extent if i dont sleep i feel like i am going to throw up
In last 3 months the pins and needles have increased but also am in horrendous pain in both feet, even when i get out of bed in a morning, when i go out the pain is so bad i can hardly put my feel on floor, my feet are now swollen all the time and even worse when i am out, hands are continually swollen and again even worse when out, pain in top of neck,  back pain continually, top of legs pain is bad especially when i try to move on a chair, after sitting down on a hard chair i go numb from spine to feet and cannot get up, i feel so down in the dumps and just dont know what else to do the pain in my feet is pretty horrendous and is ruining my life, my friend mentioned a while ago fybromyalga as there friend had it and she said it sounded like me, i feel like i am losing the plot, if anyone could advise to where to go next i would be grateful as i should be happy when tests come back negative but i am not because i am just in so much pain all the time
9 Responses
Avatar universal
I was in your position about 8 months ago. My pain was more specific though. It felt like my skin was burning from the outside. I was so exhausted because I never slept! It was too painful to lay down, that's when it hurt the most, though standing up was near impossible because I was so weak. Dr's were looking at me like I was crazy too! I was in ER about 3 times a week at all different times of days and nights. I had all tests done, the whole works and nothing came back. I wouldn't have cared if they told me I had cancer at the time because at least I would know I can treat and hopefully fight it. not knowing what is going on and the fact Dr's were baffled, scared the sheet out of me! This went on for too long and I got so depressed, I thought I would be like this for the rest of my life. I was not going to live in constant pain and that's when I started researching the best way to take your own life. This scared the sheet outta me. having these thoughts were so unlike me, but I was ready! My dad found out what I was planning and took me to the hospital again. This time they sent me to a hospital further from them, much more professional if you ask me. The first Dr I saw put me straight on lyrica for pain and endep for depression but also treats pain. Now it took around 3 months to start helping properly but now I am free from this pain... Give it a try. I was on morphine tabs, the highest doses of tramadol etc and they didn't work but these other two pills WORKED. Im so sorry you have to feel this way. I do know where your coming from. Good luck!!
Avatar universal
Thank you Aimee, just had a lett back from neurology saying that the nerve studies suggest a problem with the nerves in the extremeties, although they dont know why he doent want to see me till next year and doesn't see this getting worse, Am totally devastated been waiting for this letter in the hope of an appointment as things have got so bad, i just want to put the duvet over my head and never come out again. I told his secratary that things had got alot worse when i phoned them and this is what i get back
Avatar universal
Go to your GP! They can prescribe you lyrica and endep. Lyrica treats nerve pain which is what I had! endep treats pain as well as depression. Tell them you don't want babe doses. You want at least 75mg of lyrica twice a day. This helped me and saved my life because I was ready to end it!! It takes a while to get into your system but you just have to be patient and have faith it will help. I hope all goes well and you get some real help. Good luck mate.
Avatar universal
You both describe me!,
I was put on lycria but came off it as my mum has fibro, she is on that and put on over 5 stone in 9 months. Depression is 24/7. I found most docs and specialists don't actually listen to your cries for help, more symptoms every day. I also have the burning skin, so painful if it is touched I scream. It helps with wearing a bandage sock on my arm - to protect the skin area that has this horrible feeling. I also has steroid injection in elbow which helped with that for a short time. It is all trial and error. But, this makes you feel a bit like a guinea pig going round in circles. I get the the unbearable pain in chest, top of belly, back...it is never ending. I wish you both all the best. We have it in us to fight, and knowing there are so many others that suffer similar on a daily basis doesn't help with your own situ but is a little comforting knowing that you are not a freak and it definitely isn't all in your head.
Avatar universal
i went to gp yesterday as i got myself so upset i could not pull myself together, i dont care what is wrong with me just give me some pain relief as this is destroying my life and my families, she was sympathetic but not once did she even look at me really but prescribed me soladol capsules take 1 or 2 up to 4 times a day,  naproxen 500mg twice a day, and amitriptyline  10mg x 1 at night, not to happy abut taking the last one but i cannot carry on like this, i mentioned fybro to her and she didnt seem interested in discussing anything further than giving me tablets and to go back in 3 weeks i am going to start a slimming world club to see if i can shift some of the weight i have put in and see what happens, thank for taking the time to listen
Avatar universal
After reading all the responses, I couldn’t help but remember all of my previous doctor appointments. I would tell them of my constant pains at different places on my body and the new problems I was having with my bladder and constapation. I was taking 30mg of morphineER twice a day. That could be one of my constapation problems. See, I had 3 back surgeries between 85-86 which the final surgery Johns Hopkins placed pedical screws and rods in lower spine. I also had spinal injections and 3-4 mylograms using the purple dye.
All these years after that working in pain. Finally with new pains occurring where no pain was before, I saw a ortho surgeon that gave me a MRI. That MRI showed right on the screen, I had Arachnoiditis. I saw my nerves in my spinal column clustered together. That looked like cooked spaghetti thrown inside of my spine. This is a rare, over looked and miss diagnosed disease.
Not knowing if any of you had any of these procedures, including spinal injections, you just may have Arachnoiditis.  God bless you
Avatar universal
the pins and needles in hands and feet sound like peripheral neuropathy- this can lead to permanent nerve damage and reduced feeling in both- I got this from Chemo- but was getting the pins and needles before i was on chemo- so it was already beginning- the chemo just accelerated it- Now it feels like I'm walking on two blocks of wood- hard to balance- and when i stub my toe- I feel something, but not like i should- the feeling is just not what it used to be- which is why they say ot keep constant eye on your feet because you won't know when you get a sore- and it could easily develop into open wounds which could later require amputation- but that is worse case scenario- check your feet regularly- unfortunately there is nothing you can do once the nerve die- they don't regenerate according to everything I've read on it- the only thing you can do really is either live with it, or go on lyrica or something- which some say does help-
Avatar universal
LYME.  Get to an LLMD, one can be found through an online Lyme board.  Mine started with CRPS, nuero/brain lesions and fibromyalgia.  It suddenly spread to my heart with GBS infections and my brain shut down in fog.  The doctors uttered sepsis, but did nothing.  after 18 mo of monthly ambulance trips I was finally dx as dying of endocarditis and sepsis and... they almost refused treatment due to it being pre-existing.  IV vanco saved me, but just to buy time.  I posted for an in home caretaker, and a responder said 'sounds like Lyme'.  Watch "Under Our Skin".  Millions in America are undiagnosed, only a fraction get treatment= those who self refer to an LLMD.
I'm actually online today to learn more about why I have burning inside my skin and pins and needles.  These really onset for me with sepsis; rigors.  Bacteria cause a histamine reaction that can lead to shock.  Antibiotics?  More histamine.  I felt the walls closing in- do I need more or less antibiotics?  I'm reducing all other allergens with dust mite cleaning, mold removal, and elimination diet to stop eating histamine foods, and there are a lot.
So, I think the body feels pain from inflammation, but that's because bacteria are eating. For some reason modern medicine, and society, sugar coat and give pansy emotional explanations to serious problems.  I've felt stuck in the dark ages!  We can't possibly lack the technology to figure out illness, so what gives?  The medical system will not acknowledge static infection.  If you have a brand new little rash and fever, you can get antibiotics.  If it progresses untreated, there's nothing they can see to go on, so it doesn't exist to them.  When was the last time you had All your bacterial levels tested?  Exactly.  Chronic infection are treated symptomatically, indefinitely.  Problem with Lyme becoming an epidemic is, there are a lot more people sick this way.  Thank God private doctors are hanging up shingles.  It's a controversial issue and all you want is relief.   I'm a year into treatment, 6 months in, decades of horrible pain are Gone, I'm still aghast.  Full recovery is another matter though.  I still believe it's possible, I still can't imagine going back to work, but YEs to living a good life again.  Good luck dear!
Avatar universal
I love everybody's input and in sharing stories, answers will come.

Helen, I have such compassion for you as I know what you are going through.     I've been diagnosed now 10 years with Fibro and have seen almost every doctor/specialist....
I hit bottom with my depression.  Living alone, pain was taking over my body and mind.  
It wasn't until I realized, well more like had an epiphany that I HAD THE CHOICE to focus on the pain.  I can't control the flare-ups and daily inflictions but I CAN CONTROL how my mind perceived it.  I starting pushing away the negative thoughts.  Every time I caught myself focusing on the Fibro I would stop myself with other distractions.  U-tube has beautiful soft music playlists.  Get comfortable and try absorbing yourself into the notes of the music.  Let it fill your soul.   Be grateful of the good around you.  Open your eyes to it.  Meditation and deep breathing is wonderful too.
When I was so down in the fox hole I couldn't see any of the good around me now its the simplicities of life I cherish.  

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