Saying no to invitations, pacing yourself

Saying no to invitations, pacing yourself

Hi I was diagnosed with Fibromyalgia this past July.  What a crazy number of years I've had.   Trying to explain to family that I'm not up to going out for dinner or other invitations when I know I'm not up to it is tough.  I get these looks.  Sometimes I feel like they actually don't believe me & what I'm going through. I'm from a huge family so it's tough.  But I do feel that my oldest sister believes me with all of this Fibro & its symptoms.  I had been fighting some rib pain on & off for 1.5 years. In June /15 it became debilitating.  I'd already gave up my job some years ago because I was sick all the time.  Pain everywhere but not like the rib pain.  Anyway my sister thought it might be bone cancer & I thought so too.  One dr at a walkin clinic sent me to emerge thinking it my be an embolism in my long.  Anyway my reg dr finally after looking through my chart from years & years ago & doing the pain pressure point test diagnosed me with this awful Fibro.  All the comments I get like eat 6 small meals, exercise, get out in the sun, see a therapist, etc etc.   Anyway I'm living my life the way I see fit.   I've been so sick for so long & now that I've finally been diagnosed I think I owe it to myself to live my life the way I want to.  I make sure I pace myself big time, with regards to apps, housework, family visits or dinners.  I have to.  My husband seems to understand this.   I'm fortunate that he seems to have a it of patience with me.   Hey does anyone have these horrible waves of pain like excruciating pain?   I get it a lot.  It seems to be mostly my arms & my legs bit tonight it's in my left foot.  So painful.  My Amitriptyline helps with my terrible rib pain & insomnia but that's about it.  I may have to increase Meds to 20 mg.  did that once but I've gained 30 lbs so my dr said to try goi g back to 10 mg.   So I'm sure many of us are faced with the decision between med for pain or living with the weight gain.  Unfortunately the pain for me has to be the priority.  Will work on the weight tho as well.  Be happy & pain free everyone.   Jen 

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  • Hi Jenpadden

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to posting on the forum, and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site FMA UK which hosts lots of useful Fibro information:

    fmauk.org/

    I get excruciating waves of pain in my elbows and it is awful. I discussed it with my GP but she seemed convinced it was more to do with my arthritis than my Fibro as I have arthritis in most of my joints. I think it helps a great deal with coping if family and friends have a good understanding of how Fibro works and that they show some semblance of understanding and empathy.  

    I genuinely admire your outlook on life and Fibro, and I want to sincerely wish you all the best of luck. Please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Thank you Ken & Happy Easter!

  • Thank you, and a happy Easter to you also :)

  • Being diagnosed makes all the difference especially in how you think about yourself, it was a big turning point for me. I think your doing great xxx

  • Thanks so much Cindy!  It sure does make a huge difference.  Happy Easter!

  • Has anyone considered the possibility of Polymyalgia rheumatica ? I assume your docs have taken blood tests for inflammation ? Have you been referred to a Rheumatologist yet ?  It's a pity you can't enjoy reunions with your family, if you really would like to go, of course. Be careful that you don't become isolated. I do hope you feel better soon.

  • I have just found out about this Polymyalgia, recently, my Husbands Aunts has it. Do you know the difference between Fibro and poly?

  • I'm not sure that there ARE any tests for fibromyalgia, as far as I know. it's a title given to a set of symptoms which are undiagnosed as anything else. Whereas Polymyalgia Rheumatica IS usually diagnosed from very high ESR & CRP, history, symptoms & signs, responds remarkably to steroids & is an autoimmune disorder probably of virus origin.

  • Thank you

  • Do many of you have autoimmune disorders?   Also my dr said when he diagnosed me with Fibro that it could be caused from a bad virus.   I have hashimoto's which is an autoimmune disease. They say that when you have one you can develop more autoimmune diseases more easily.  

  • If you have Hashimoto's, Jen, then your GP MUST be taking blood to test your thyroxine leveis at regular intervals. If you or your husband notice that you are slowing down & becoming even more sluggish then your GP may find you need to increase your thyroxine dose after he's checked your blood levels. Hypothyroidism alone gives one aches & pains, particularly if not stabilised, without looking anywhere else ! The associated weight gain doesn't help joints & muscles either, does it ? !

    Unless you have an inflammatory condition then gentle exercise is very important to keep joints & muscles active & moving. As yet, doctors do not know what causes (or, sadly, even if it exists at all !)  fibromyalgia, so consequently they don't know how to cure/control it, it's trial & error, I'm afraid, till technology improves. Most important is to EXCLUDE all the other conditions like polymyalgia rheumatica, rheumatoid arthritis. lupus etc.etc, by blood tests, investigations & history taking, which CAN be treated & controlled if not cured. Surely you've been to a Specialist of some sort by now to confirm your GPs diagnoses ? They aren't called General Practitioners for nothing !!

  • Junechopin I do get fairly regular blood work but I often feel it should be done more often because for at the the last couple Yeats I've been sees sawing between hyper & hypo.  My dr doesn't really speak much about the Hashimotos except to tell that I have it which he told me about 8 yrs ago. At times he'll have me on alternating dosages of the Levothyroxine.   I feel like the weight gain is due to the Amitriptyline that I started in July but sure an extra 25 lbs won't help my joints.  Also, does anyone here know about what type of blood work I should have?   IE. I've read that for blood work for the thyroid, they should be testing T3, T4 & Reverse T3 & TSH.   But my dr only checks my TSH.  He's never mentioned that he's checking me for any other conditions such as the polymyalgia, RA, Lupus or anything else.  I have told my dr that RA is on both my mother & father's side of the family.  I've been to an ENT dr as I have cold nodules on my thyroid that they check by US to make sure there's no cancer.  The ENT dr did a biopsy 8 yrs ago.   I have not been to any specialist to confirm the Fibro.  Would a specialist  do other tests to confirm the Fibro?   If so, what would the other tests be?   So much to learn.  Thank you June.   Hope your Easter has gone well.  

  • Sorry to hear 😯but I think u are on to something bcos I've had rheumatoid arthritis for just over 20 yrs and that is an auto immune disease soft hugs x

  • I'd be interested to know the difference as well. 

  • My husband was diagnosed with Polymyalgia Rheumatica. His was diagnosed from blood tests. I believe the difference between the two, is that Polymyalgia affects the joints & causes inflammation, whereas Fibro affects the muscles & soft tissue & there is no blood test for Fibro. 

  • Thank you for that explanation FibroAnnie57!

  • My sister and mother have polymyalgia.  Blood tests show raised inflammatory markers (ESR) and symptoms are eased by steroids.  

  • Yes my Mum had PM and was put on a short dose of steroids to clear it up, after the blood tests showed inflammation, she then developed fybro. 

  • Wow I'd like to know more about this polymyalgia.  

  • Hi June. I'm not sure what the polymyalgia rheumatic is?  My dr hasn't taken blood for inflammation.  I haven't been referred to a rheumatologist either.  I do see family but am able to say no if I'm having a bad day. I think isolation could become a problem if you have no family or friends.  That must be very difficult.  Thanks June.   Happy Easter!

  • Has your GP really not taken any blood for tests in the last 12 months ??

    It's not appropriate for me to say what your GP should be doing, I don't know you & don't know anything about your medical history or how you deal with life BUT if, as you say, you have been in pain for a considerable time &, from your post, seem to me to be very debilitated & low spirited, then at the least I feel you should have blood tests to monitor your blood picture generally, ESR & CRP. IF your blood shows that the ESR or CRP levels are very high then it would be reasonable to refer you to a Consultant Rheumatologist. Amytryptiline is NOT an analgesic, it is primarily an antidepressant & SOME people feel ill taking it rather than better !! Your rib pain could be that, because you are less active, your muscles are weaker & subject to damage if suddenly used briskly like coughing or sneezing or even laughing ! If so, it will heal with time, a week or two, but a 'hot sock' & paracetamol tablets will be a comfort too ! What signs & symptoms have you been having over the past years that you describe as 'crazy' & what tests or investigations have you had with your GP or hospital ?What does your husband think ?

    Keep your chin up &, above all, take control, it's YOUR life !!

  • June the only blood work I get is for my thyroid & its done every 9-12 months.  I'll be going for blood work in the next week or so. The worst of the debilitating pain has been the rib pain.  It had started with twinges of pain around 2-3 yrs ago.  Then in July 2015, the rib pain beca,e debilitating.  I couldn't lie down, sit or breathe without this excruciating pain.  As I said my dr look back in my med charts & saw many things that led to the diagnosis of Fibro but it was the pain point pressure test that confirmed his diagnosis.  He told me that the Amitriptyline is indeed an antidepressant but that it is also used to manage pain.   So in the 9 mos I've been on this med I've had to increase the dosage but with the weight gain, decreased the dosage but it appears it may have to be increased again with this worsening back, neck & shoulder pain.  

    The signs, symptoms etc that I've had over many years are:

    Chronic bronchitis, swollen eyes, swollen & painful cheeks, jaw pain, cracking teeth, dentist says I've got unusual amt of plaque that firms on my teeth, GERD/acid Reflux, vitamin D def, scoliosis, two 5 cm haemangiomas on my liver & they found another one smaller one during an MRI, pre-cancer (atypical Ductal hyperplasia in two spots on right breast - had 12 biopsies & an lumpectomy all in 2013.  I'm high risk for breast cancer due to family risk & the adh. I have to have yearly MRIs & 3D Mammograms every year. (The MRI caught the 3rd haemangiomas on my liver.  I also have excessive vaginal scarring, Hashimotos, weak ankles that have made me go down a few times, I'm normally hypothyroidism but the dr keeps telling  me he has to fine tune my thyroid, trouble swallowing although that seems better lately, a cough that comes & goes ( last chest X-ray should some pleural thickening which ,y dr said not to worry about, I had a pulmonary function test that ruled out asthma.   I take tectra for the Acid reflex. My dr wants me to have a Gastroscopy done to make sure I don't have Barret's esophagus since I can't seem to go off the tectra.  I also have osteopenia. So I take Vit D3 & calcium.   The last few months my eyes are giving me problems in that I'm missing things that I'm looking for that often are right in front of me.  It's funny sometimes but also worriesome.  I can't handle bright lights, loud sounds, crowded places.  As a passenger in a car I actually see cars or trucks almost hitting us.  That's driving my husband & my older daughter crazy. They think it's my eyes so this next dr appt will probably also include seeing an eye dr.   I feel this last part about my eyes is awfully strange but you asked for all my signs & symptoms June so there you go.  Oh I forgot, mitral like valve prolapse, heart murmur.   That's about it I guess.   Boy that was long. Sorry everyone.  Hope you've all enjoyed your Easter weekend.   Jen

  • You certainly do have a lot to contend with, Jen. I must say that it does make it much more difficult for your GP as well, which is why I hope he is seeking advice from Specialists even if he's not referring you to their clinics. Many of the conditions will probably never cause you any problems but need occasional check ups, like the DCIS in your breast, haemangiomas in liver, mitral valve murmur, tooth plaque (have six monthly dental hygiene), pleural thickening.

    However, I do think I would like further investigation & advice about if I were you. 1) You may not have asthma BUT you may well have COPD (Chronic Obstructive Pulmonary Disease) & a specialist COPD GP or consultant might suggest an inhaler to help your breathing, cough & prevent complications like chest infections.2) I definitely think you & your family are right to worry about your vision changes. It would be important to me to exclude the eye complication associated with untreated Polymyalgia Rheumatica called

    Giant Cell Arteritis. Which would, of course include investigations to definitively exclude polymyalgis all ! 3) There are NO tests for fibromyalgia, & some medics even question that it exists at all & that it is a desperate response of doctors who don't know what else to say to a patient because they no longer have the answer to their symptoms !! 4) I would also take your GP's advice & have a gastroscopy. It's not a pleasant investigation BUT if you insist on having sedation, usually Valium or a light anaesthetic, you won't remember much about it, & they usually are able to put your mind at rest immediately afterwards. They are MUCH gentler & kind these days ! 5) I know that sometimes thyroxine levels are difficult to stabalise, but you shouldn't really be seesawing up & down like that, it does sound a bit hit & miss ! I think I would like a second opinion if you haven't seen a specialist recently ! 6) As for the Amitryptiline, well ! I am one of the people who thinks it was a BIG mistake to take away the license of Coproxamol tablets in 2007 because it has left thousands of chronic pain sufferers without adquate pain relief & dependent on alternatives like Amitryptiline which have very unpleasant side effects & DO NOT relieve the pain but simply dulls one's percepteions in life generally. On top of the effects of the hypothyroidism, Jen, that must make you feel pretty rotten ! 7) A Consultant endocrinologist may be able to stabilise your blood thyroxine levels better.

    Basically Jen, I think I would be looking for a second opinion who would look at me AS A WHOLE, which won't be easy, they are rare medics, so I would concentrate on getting specialist advice for the following. FIRST, your eyesight problems, + exclude polymyalgia rheumatica (Consultant Rheumatologist), then ask for a referral re. your unstable thyroxine levels, then exclude COPD ( ? your local COPD clinic or a Consultant Chest Physician ), then have a gastroscopy.

    What other analgesics has your GP suggested other than Amitryptiline & Gapabentin, have you tried Cocodamol (paracetamol + codeine so take with lots of prunes, they DO work !!! ) Also, what is Tectra, if it is an antacid, it MAY contain aluminium hydoroxide which interacts with Amitryptiline, so avoid taking them at the same time !

    Briefly, take control of YOUR life, Jen.Have confidence in your feeling that life COULD & SHOULD be better for you. DO NOT be a victim !  If you do not have confidence in how your GP is handling your medical problems, then seek a second opinion. If your GP won't refer you on the NHS then EVEN go for one private consultation to a rheumatologist. It will be worth the money tho' I am a passionate socialist !! You give a very good history & he/she would take the necessary blood tests too & may continue to see you in an NHS clinic, i.e. choose someone who is also working in the NHS if possible.

    I really am reluctant to destroy your confidence in your GP but I do think you deserve better !!!  Good luck !  June

  • Your attitude is inspirational, thanks for sharing Jen ...x

  • Aw thank you Sab123blossom.  You have a Happy Easter.  

  • Hi Jen, I get what you say about the look. I also get pain in arms and hands and legs ,feet, so I get how you feel. I use a little movealate doesn't take pain away, but does ease joints a bit. Hope you feel relief soon. X

  • Hi Blue52. Yes I sure get the looks but they don't bother me so much now.  It is awful pain isn't it?  I haven't heard of movealate.  Can I get it in Canada?  I'd really like to try something.  Pain is still so bad but I'm doubling up on my Amitriptyline so hopefully it'll do its thing soon.  Ty for the suggestion & Happy Easter.  

  • Hi I am not sure if you can get it in Canada, maybe google it, and see, it helps a little with Meds . 

  • I think Movealate is an anti-inflammatory cream, Jen ! Just realised that you are in Canada ! Sorry ! So all my talk about the NHS doesn't apply !!

    I hope my comments are still helpful & that you can apply some of them ! I'm a retired midwife !

  • Welcome to the forum.  It is Easter so many are involved with their families but just to say you will probably get more replies to your posts if you lock them, the instructions should be on the right of your screen.  If you don't your picture and the whole of your post and any of our replies will be available on places like Facebook.  Understandably alot of forum users are wary of sharing personal experiences if they think they can be identified.

    It sounds as though you have been on quite a journey.  Yes it seems very difficult for many close  family members and friends to understand an illness that looks invisible, if we had a broken arm we would have all the sympathy in the world.

    Your rib pain sounds like costo-chondritis which is inflammation of the rib cage.  It can either be for a short period of time or like me can be long lasting, anti inflammatory meds like Ibuprophen seem the best for it so investigating that can be worth it.  I am nit medicalky trained but I suffer from the same problem.  Many of us lije Ken and mysekf akso suffer with osteo and thatcan cause reaaly bad flaring pain in joints.

    Yes it is a balancing act between putting on weight on certain meds and getting reasonable pain relief I am on your side on that bring on the pain relief I say.  Also sometimes I think we blame the meds when in fact the pain and fatigue has curbed our lifestyle so much that we have become very inactive.  I used to swim 75 lengths a week, work, walk the dog do all the big garden etc and bow it is light everything and slow,walking so even with eating less I have gained a bit of weight and certainly lost condition.

    I think you are wise to go with the flow a I call it as we know our own bodies best and if we try and force ourselves during our flare periods it just leads to days of misery   I look forward to  reading your posts x

  • Thank you Rosewine.  I'm looking to the right of the screen & I don't see the lock. I'd def like my posts to be locked.  About my ribs, my dr this its def the costochondritis & the Fibro.   The pain is much better but it's still there for sure.  Yes I can see that with the Fibro it could very well turn someone into an inactive person altogether.  I find when the pain is worse & im just feeling really bad that I will nap if I need to but I try to get out walking my dog & purposely taking stairs as often as I can wherever I go.  

    Wow 75 lengths that's amazing!  I had to give up gardening which I loved although I still plant some baskets to go with my beautiful shrubs.  I miss that I can keep up the the more physical demands of gardening from before but then finding my passion through my oil painting has been a godsend.  It really has. Happy Easter!

  • Hi again.  If you want your future posts to be locked you can easily do it.  When you do a post and you scroll down to the bottom of the page your will see something like "who is this message for" and it will say Everyone or Community.  If you tick Community only members of this forum can see your post if you tick Everyone that literally means Everyone so say people on Facebook can see it.  Be aware that even though a post is locked about the first 180 characters and the title still van appear on different sites.  This is to encourage people with Fibro who know nothing about the forum to come and investigate.  That is why some of the first paragraphs in posts might something ime appear a little bland.

    I am so glad you have your oil painting to take your mind off things.  I to was and extremely keen gardener but have just moved to a bungalow with a pocket hankerchiefs garden as I could no longer manage my pride and joy.  Like you I think alot of easily managed containers are on the agenda.

    I too used to enjoy walking our dog who was a rescue collie but she needed far more exercise than either my OH or I could now give.  We are thinking perhaps of having an older rescue dog.  At the moment I have to be content with munching other people's dogs and occasionally looking after friends.

    I wish I was a napper can't sleep at night let alone in the day.  Lovely to meet you.x

  • Yes ok I did find that. Thank you again Rosewine. Yes I miss the gardening but I just love the painting.   My husband wants to move to a bungalow as we don't really need a 3 br 2 storey with a finished basement.   But I say well maybe but it has to have the  nice bright room for my painting. Lol.  He's totally supportive of me & is very happy that I've found something that gives me such joy.  He does all my framing & im so grateful for him & his support.  I actually got my name & picture in 3 newspapers in a small town where the gallery has 18 of my paintings as I'm their guest artist for 3 mos until the end of April.   I had to be interviewed by all 3 & worried so much that this Fibro fog would ruin the interview but it was great.  I'm looking for the next gallery once I start feeling a little better.   Thank you so much for your support & feel well vibes to you from  me. Jen

  • How wonderful to see your work up on a wall in a gallery.  I was mortified when my friend who has always done wonderful drawings,and paintings had some of hers exhibited locally and I was too ill to go and look.  It would have been lovely as there was a children's section and two of her grandchildren had pictures accepted.

    So glad your husband is so supportive.  Yes you need a lovely light filled room in your next place.

    I was also asked to appear in the Daily Mail about something financial with my husband and from that to do an article and have a picture taken for our local Zoo magazine.  Like you I was wondering whether the brain would spout gobble gook on this day but if I did they managed to make it sound as though I knew what I was on about!!x

  • We are only here for a fleeting moment. Do no harm and do no ironing.

    So do it your way I say.

    Wishing you well.

  • I'm with you there,  do it your way and definitely NO ironing

    Live the day it's the only way 😃

  • Thank you nedd & Happy Easter!

  • Don't know if it will help but I use some of the breathing exercises used in childbirth to deal with waves of pain.

  • Oh yes Molly I do those as well.  It helps to relax me & breath through the waves of pain.  Happy Easter!

  • Hi Jen. I am with you on the weight V pain thing. I take 100mg of amitriptylene prescribed by my rheumy. I have gained 8lbs since starting it last year, but I also have a chocolate craving that I've never had in my life before! Must be something in it that my body craves. I've always been a savoury kind of girl. 

    Pacing is a must! Only way to keep us having some form of life. You will know that well. I hope you find a way too keep yourself as painless as possible 🐸

  • Oh sorebones 100mg of the Amitriptyline!  My dr said I could increase a lot on the dosage but I think I've been afraid that if I do that & everything just becomes too much with the pain etc then what will I do then?   My dr knows how terrified I am of taking any kind of pills.  When he prescribed the Amitriptyline, I agreed to it but said I'll make sure I'm off these in no time at all.  That was almost 9 mos ago.  My pain everywhere seems bad enough especial today that I'm tempted to increase the dosage of the Amitriptyline to maybe 30 or 40 mg.   I'm loving chocolate too!   Hmmm....   Thank you for the chat & I hope you have a happy Easter.  

  • It really can't be easy being wary of tablets and in so much pain. My mum is like you. She used to refuse to take any, but has had to give in to a couple now. It is such a matter of personal choice. I'm of the opinion that if it helps me let me have it. You must stick to your beliefs.

    I hope you have a lovely Easter too. Despite the weather lol 🐸

  • It isn't easy & I know my oldest sister worries that I'm in too much pain when maybe I don't need to be.  What I tell her is this.  All the aches & pains were manageable until lately that is.  I only feel that I should up my dosages when the pain becomes unbearable.  Not sure if that's a good way to think or not.  Once I see my dr I'll see what he says about increasing.  I know he'll say I should as he mentioned in the beginning that it can be increased by quite a lot.   Thank you sorebones.   

  • ☺️😊☺️🐸

  • I have excruciating pain ever day ti wear me down am on morphine some time it works and sometime not I hate taking it and leave till am desperate 

  • Im sorry to hear that your pain is excruciating Brora56.  Wow morphine.  If I up my dosage of Amitriptyline, I'm hoping it'll help.   I could barely get out of bed this morning.  Was awake a lot last night because every time I moved it hurt my back.  Woke up early with a headache & pain still in my back but also in my neck & shoulder & shoulderblade.  Crazy pain. My husband gave me a massage but it didn't work.  I took another Amitriptyline & went back to bed til 1:30 pm.  Something I've never done.  Typing these messages & still a lot of pain.  Thanks for your reply & happy Easter.  

  • Hi Brora56, I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck. Please take care of yourself.

  • I have been diagnosed for 15 years now and can confirm that you are on the right track. You need to pace yourself or you will not survive this illness. Those who truly love you will understand but those who don't aren't your real friends and you will have to let  them go. Keep your chin up as I sense that you instinctively know the right thing to do you just need a little reassurance. Good luck

  • 15 years Alexandria!  I can't imagine going through this for 1 yr let alone 15 years!  Omg!   Is it not possible that this disease will just go away?  But when I think back over the last probably 30 years, I've had so many problems with my health that I probably had the Fibro way back then.  But everything got so much worse this past couple of years & the rib pain so debilitating.  Thank you Alexandria for the reassurance.  It's much appreciated.  This is truly a great website! Happy Easter.  

  • Sorry it has taken me so long to reply but I must admit I don't come onto the site very often. Fibromyalgia has its peaks and troughs the same as the other auto immune conditions  so it is vital that you establish a good pacing routine. I also have Lupus(SLE), Sarcoidosis , Kidney Disease and IBS but I think what keeps me going is a positive mental attitude. Try to get out into the world as often as you can even if it is going for a short walk to get some fresh air. It all helps in small ways. Take care and best of luck

  • Hi, still only on Zappain. I have friends  with Fibromyalgia,  they are taking  everything,  and still in the same amount  of distress as me , so i have decided  to push through  it until  i drop! Lol. .. it is not easy, i am sick  to death  with the pain!  But need a life! Off to bed now with my lovely  hot beanie..xxx

  • Hi Malsy.   How long have you been on the med?  It certainly isn't easy. Hope you have a great sleep! Happy Easter. 

  • Sorry,  forgot to say, no, don't  go if you don't  feel up to it! I very rarely  go to anything  now, unless it's  on my terms, and my times. Stuff them, we have an illness, even though  we look ok!! 😊😊

  • Oh I sure don't go unless I'm ok to do it.  For sure!

  • Hi Jen. I've  taken  Codeine for 4 years  now. Originally for Arthritis of neck, spine. Then gradually this widespread  pain  crept in, leading to a fibro diagnosis.  I have also  taken Gabapentin  for a few months,  which was for Sciatica. When the Sciatica was gone, i thought  I'd  carry  on to see if it helped with the fibro . But back came  all the same pains. I only  had one pain when i had Sciatica,  and that was down my leg. It was so bad, that was all i could  feel. So had a break  from the other pains...lol. it was a high dose too, but didn't  work on those  pains. So for now i keep to 30/500 codeine, so at least  i have some sort of life!  Hope you well today?  X

  • Hi Malsy, maybe I should try the codeine but I do worry about my liver &'the large hemangiomas so not sure if it's the way to go.   I'm glad it's working for you.  We all deserve to have pain free lives.   Thanks Malsy.  

  • yes most of us get various different kinds of muscle and bone pain BUT you must never assume its all fibro linked! I tool finished work early and yes I do often get doubtful looks from family and work colleagues about my mobility and pain they cannot see. You should take your family for a chat with your g.p. so that he/she can explain fibro to them, your next hospital apt take your partner or parent its the only way many actually appreciate how you cope.  good luck

  • That's a great idea  caz54.  My husband understands because he took  me when the rib pain became unbearable.  My dr said that the pain tends to worsen over time. He thought I should go to a pain clinic which I will do if the pain becomes unmanageable with the Meds.  Thanks for your support & advice.  

  • Hi Jenpadden sorry your in so much pain & hope you can eventually control it better. It's hard work & a full time job in itself. I have Fibro and arthritis & always in Pain, just some days are better than others. 

    I take 100mg of Amitriptyline and sometimes 10 or 20mg in morn.depending on how I feel. It is a drug that you get used to very quickly and the dose is normally upped within a few weeks so personally I would look at getting a higher dose. They do help, I used to be like you and just hated taking any kind of prescription drugs. Then i just got to a point where i would eat plastic bags if it stopped the pain lol.

    also like you, my weight is a problem, I'm always on a diet of some description but it's so hard when you are taking meds that make you feel hungry all the time. 

    Your rib pain sounds very much like Costo chondritis, its hideously painful and i was convinced i had something awful wrong with me. I get pains in arms, hands, legs, feet and my back ache is so bad some days it makes me cry. So I know exactly how you feel and I love your attitude and you are so positive and this will help you in so many wAys.

    I had Fibro for many yrs & was told I had all sorts, or a couple of times, apparently I had nothing wrong with me so when a specialist finally diagnosed Fibro it was a relief that I wasn't going to die from a serious life threatening desease and made me more equipped to deal with it.

    It's the Fibro fog that makes it fun, I was convinced it was my birthday today  I've had flowers, opened cards & presents and just found out its not today at all, it's tomorrow hahaha only I could do that. I'm gona be chuckling all day.

    Peace, Luv n light

    Jan xx

  • Hello Jen. Yes I totally understand all you are going through! I too am in such pain with this terrible Fibro. My  40 year old Son has also been diagnosed with it. I am also taking Amitriptyline. Was told by GP to go up to 50mg, but got up to 30mg & felt like a Zombie! I tried to come off them altogether, but needed something to ease the pain! So started again from scratch. Am taking 20 mg at the moment. Which isn't helping much really. I have also tried gabapentin. Pregabalin & Duloxetine, but side effects bothered me , so stopped those. The weight gain you mention bothers me also! I need to lose weight, not gain it! 10mg doesn't do anything for my pain. Do you suffer from lower back pain?  

    I wish you all the best, 

    Pat 

  • Hi everyone, I've been off of here a few days due to my fatigue and trying to do some painting.  But I I have tried to read each & every one of your posts & reply to them.  I have a few more to do so bear with me.  I will tell you that for a couple days now the pain started to subside for the most part.  It's my neck & eyes that are bothering the most.  I'm taking Tylenol.  It's helping a bit. This may sound strange but yesterday I decided to stop the pain Meds altogether...for now anyway.   I think I need to do as June suggested & go back to my dr & start getting apps with specialists to see what's really going on with me.   I hate the idea of Meds & taking them as a bandaid for what may really be going on is just silly to me & especially as they may be causing my weight gain.  I'm trying to do a bit more walking & stretching each day.  The other night I was on another community on here.  They were talking about cortisol, etc.   One lady thought some of my symptoms could be polymyalgia rheumatic.  Anyway, I need to get these apps to find out for sure.   Thanks you so much everyone.  I truly appreciate your opinions & advice & most of all your support.   Have a great day.  Jen xo

  • Yes the pain really tires me out and I have days of not sleeping also! I too was diagnosed a few months ago when I went to the specialist for the other chronic auto immune disease (rheumatoid arthritis ) I was so relieved to be diagnosed don't get me wrong I'd rather not have fibromyalgia. ..but I wasn't going mad as a hatter lol I was glad that now they know that I'm not being a big baby with the rheumatoid ! At last I can see what options there are and hopefully get control of thefibromyalgia! Wishing u best wishes and less pain and a soft hug to you :) x

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