I have Fibromyalgia My chest & ribs feel crushed & bruised What can I do?

Hello Victoria. I have a tens machine and it helps if I have back pain, but the problem with Fibro is that the pain is everywhere and it doesn't work for that. I was diagnosed at a pain clinic and prescribed oxycontin, which the doctor said is the only effective pain relief for fibromyalgia. I take 30 mg twice a day, and 10 mg of oxynorm when the pain is bad (usually in the night after I have been lying in the same position for more than 2 hours) A few months ago the doctors added ketamine intravenously for 3 days each month. The pain is much more bearable now, and I don't have any side effects from these treatments. I had read quite a lot about these drugs on the internet, and was very nervous about the possible bad side effects mentioned, but I can honestly say that I have had no problems so far. I never drink alcohol, or take more than the prescribed dose, but I am still afraid of becoming addicted. I never get a feeling of being high, my thought processes don't seem altered. I absolutely could not live with a drug that made me feel disconnected, or confused. The ketamine makes me sleepy while it's being administered, but an hour after the perfusion is finished I feel completely clear-headed. That is so important for me. I have read about flare-ups, but I don't really know if I have them. It's all pretty constant. Before I started the oxycontin, nine months ago it was really unbearable. I could be walking in the street and suddenly be completely unable to move, the pain was so intense I could not put one foot in front of the other. This could last for several minutes before my back unlocked enough to allow me to go home. The pain seemed to move around in my body, which was completely incomprehensible for me; I had never heard of a pain that could MOVE. But now I know it is a frequent symptom of this disease. The variety of pain sensations is also hard to cope with. My first symptoms were severe burning pains, like cigarette burns, but sometimes it was like being stabbed with a screwdriver in my joints. I also had a few attacks of chest pain that were so bad my partner called an ambulance and I was hospitalised 3 times. I had suffered from pulmonary embolism three times in my life and the pain was very similar, so it was very frightening. The chest pain I get now is not the same, it's more of a severe tenderness, as though I have been badly beaten and bruised.  I had many years of trying to understand what was happening to me before I was finally diagnosed. I have since bought several books on fibromyalgia and I find it is really helpful to learn about the illness, it helps me to cope better with the way it has changed my life. Before, I felt as though I was the only one with so many health problems, and no-one seemed to understand. I wondered if it was psychosomatic, but I knew that the pain was all too real. I find it hard to accept that there is no cure and that I will have this illness for the rest of my life. So when I finally found a treatment that really reduces the pain and enables me to walk a little,  do my housework and a bit of do it yourself (my passion) I feel really grateful, and want other sufferers to know that there are treatments that work. Perhaps your doctor will prescribe a different combination of drugs for you, and perhaps it will work as well for you as my treatment does for me. At least you have the hope that there will be a solution. I do hope you get relief soon, you are much younger than me and have your whole life before you, you can't let severe pain stop you from enjoying it. It took nearly 30 years of suffering  from when the first bizarre symptoms started until I was diagnosed last December. I took care of 5 children and ran my own business, but it was very hard with no effective pain relief, and no understanding of what was happening to me. At that time there were no internet forums and no way of knowing that others were having the same problems. It really helps to be able to share experiences with fellow sufferers who really understand. I was often almost embarrassed to have so many health issues, and hesitated to mention yet another pain to my doctor in case he thought I was a hypochondriac, and hated to have to try to answer simply and honestly when my children and friends asked how I was feeling, because I have always tried to be positive. But it is hard to find anything positive about fibromyalgia!! Take care, I hope you are feeling better today

Thanks Julia that really helped me to think positive because I'm almost always a positive person. It's just so hard when I'm so young and my desires are not been met because of this stupid crippling illness. I am emotionally detached because the guilt is terrible because I can't give my family 100% of me because I'm either in bed or working. 

I am getting worse. When I first got it I was in pain all over but not as intense and I was extremely tired. Now I have intense pain everywhere but I get extremely worse (if that's possible) when I flare up (like I have the flu 24/7) and I'm always tired. I get good and think, wow maybe I'm getting better and then SLAP I get hit hard. 

So hard to keep going known I'm going to have this for the rest of my life. I also get stiff and really painful that I can't move it's horrible. I feel like a 90 year old women sometimes. 

Do you suffer with hot and cold? I get extremely hot where I would nearly pass out if I don't cool down and I get cold almost as if I was in a freezer. 

I will talk to my doctor about changing my meds I'm back on the 2nd of October. I am always so afraid to change meds because I get very bad withdrawals. The last time I went off meds I was only on for 3 months at a 25mg dose. I got so sick and I had these electric shocks sensations when I moved or a sound. Oh my gosh it was extremely horrible experience  so now I usually get the doctor to leave me on the meds and just add to it. But I will get something else. 

We will beat this illness and find our own cure xx 

Hello. I hope you are having a reasonably good day today. I don't suffer from feeling hot and cold without reason, but I have a lot more pain when I am cold or the weather is damp. I understand completely your fears about changing your medication. Before I could start taking Oxycontin I had to stop taking Skenan (also morphine but a different molecule) and the withdrawal symptoms were terrible.  But they dont last more than a few weeks, 3 or 4 in my case. And as I was suffering so much pain I didn't really have much choice if I wanted to try to find a better method to control the pain. I had been taking Skenan for 4 years, and although it worked better than all of the other drugs I had been prescribed I still had too much pain to be able to live normally. Pain in all of my muscles joints and nerve-endings. The weather is damp at the moment, so I have quite a few problems, but it's much better than a year ago. The extreme tiredness is very hard to cope with. You work so I really don't know how you cope. If I don't lie down and sleep for even just a few minutes when it hits me I feel really very ill. I don't even try to keep going now when it happens, I lie down straight away. If anyone has a good tip for coping with this tiredness please give us a clue!! The worst episode I had was when I was very tired but kept on working for several hours. When I finally decided that I had to get to bed it was 7.45 pm. My bedroom is up one flight of stairs. I arrived in my room at 3.15 am. I had slept on each stair before I had the force to climb another one. Since then I don't hesitate to lie down when I feel I have to. With this illness I have learnt that I must listen to my body and not try to do too much. I have been a workaholic all my life and found it very hard to slow down. But if I do too much now I spend three or four days paying for it, so finally I am trying to adapt and trying not to feel too guilty when I lie down with a book instead of continuing to work when I feel worn out. With fibromyalgia I can feel exhausted after I have been out of bed for half an hour some days, so on those occasions now I rest a bit longer before I start my day. I really feel for people like you who must continue to go to work and try to live a normal life. I had this illness for many years before it was diagnosed, and continued working with the pain, but I was lucky that I have only suffered with the extreme tiredness for the last three years. Did your doctor change your treatment or have any tips to help you? I hope so. Take care. XX

Hi Julia, 

Thanks for your reply. I went to the doctor on Tuesday and he basically told me there is no more treatment for me. I have to come off the lxiprim slowly but I'm already struggling cause if I miss even one dose by an hour I have feelings of electric shocks threw my body. It's terrible. I get this went I come off any meds that's why I have to be careful. He "unofficially" told me to try cannabis. And Iv tried it an it helps with sleep and helps me relax but for obvious reasons I can't do it during the day so I'm left with nothing to help during the day. I am struggling with work I do take a service user to do meditation just for an excuse to lie down for a few mins. I don't know how long I can go on like this. What other meds have you tried? He said OxyContin makes people feel like they are hung over??? Did you have this experience? He told me that I could do research and come back to him to discuss medication with him. I'm really low and feel like I just want to give up. My positive attitude is slowing decreasing. Any help would be much appreciated xxx

Hi. You need to see a specialist. Your doctor cannot prescribe oxycontin, it must be prescribed by a specialist, not a generalist. I do not feel the slightest bit hung over, my thought processes are perfectly clear, and I am lucky in that if I forget to take a dose even two hours later I do not have any unpleasant side effects. The treatment you are on seems to have more of a down-side, and it doesn't even help your pain. I get quite angry with people in the medical profession who make statements that are not verifiable. My own doctor told me categorically that Fibromyalgia did not exist. He said it was an illness imaginary that people said they had so that they did not have to work!! When the specialist I saw at the pain clinic tested me for fibromyalgia, she told me I suffered from this disease within 5 minutes of commencing her examination (the pressure point tests). When I saw my GP the following week and told him her findings he said "Oh yes I know it exists but so many people pretend to have it" I have never asked for certificates to exempt me from working; in any case as I had my own business it was hardly necessary! His refusal to refer me to a pain clinic for more than a year after I asked to be tested for fibromyalgia meant that I suffered terribly for nothing; but worse than that the specialist told me that the longer one waits to get proper treatment the more deeply entrenched the disease becomes, and more difficult to ease the symptoms. The way she described it was as if the body becomes addicted to the pain and tries to hang on to it. She said that in patients who get effective treatment early on the illness rarely degenerates to the point that it has in my case. SO KEEP TRYING to find a doctor who will be able to help you. I have tried about 15 different analgesics but nothing worked, not even high doses of morphine. Some of the treatments made me feel nauseous, or gave me vertige, but I can honestly say that is not the case with my present treatment. Strong drugs affect different people in different ways. I have read that cannabis helps people with severe pain, but I do not smoke cigarettes and so I am not at all tempted to try that. I think it is a bad idea, and would almost certainly cloud one's judgement. You say that your positive attitude is slowly decreasing! it is the constant pain that is causing that. Before I was diagnosed I suffered terribly, but always hung on to my belief that once I was diagnosed I would get the proper treatment and be cured. It was such a blow to learn that there was no cure; I had never even considered that possibility. I was very depressed and frightened of what the future held. Almost every week there was a new symptom. Of course I was more aware than before and noticed each change more quickly. The depression has gone now, and I am less afraid than before because now I know there are treatments that can help me if not cure me. You can do research on the internet to find out which drugs work best, but there are some real horror stories too, that really scared me. I am glad that I took the advice of the specialist and tried Oxycontin. In USA it seems to me that people think of it as a drug taken by addicts. I watched a TV series recently (The Walking Dead) I adored it, but in several episodes it seemed to me that people were referring to Oxycontin and saying that it was THE drug to take if you wanted to get high!! What a laugh. I take it because I am in pain, and I NEVER get the slightest sensation of well-being. It never dims my perception, nor clouds my thought processes, and I certainly never get a stupid smile on my face ten seconds after I have swallowed it like the people in the film! It makes it hard to tell people I know that I take Oxycontin, because the only knowledge that my family has they have gleaned from television. I have just re-read your letter. Your doctor is WRONG. There are other treatments available, but it is going to be up to you to find them, he is obviously going to be no help at all. Do you have a pain clinic near you? Insist on a referral, or change your doctor. You cannot spend the rest of your life suffering because your doctor is useless. It seems like a harsh thing to say, but if he tells you there is no treatment, when that is obviously not the case then you owe it to yourself and your family to find another doctor. Take care, and don't give up just yet!! XXX

Hi Julia, 

Thank you so so much for that comment. I have seen a specialist in June of this year and he put me on Lixprim. I'm down to 6 a day instead of 8 with a few side affects that are not externally bad. I do get the electric shocks if I try to lower it less than the 6. 

I don't know why your doctor would say it's not a real illness there are many people unable to work due to the illness and I do understand that some people use illnesses for the excuse not to work. Depression is a big one that people claim benefits, does that mean that doesn't exist too?? But if he looked at the bigger picture and look at people that do work and want to work (e.g. Me and you) why would we want to pretend we have this horrible illness?? P****s me off when people says that. 

I told a friend recently that I had fibro (I don't like to tell many) and she told me her sister has it but in her case "it's from sitting on her bum everyday". Couldn't believe what I was hearing. 

Don't blame her I blame the lack of education around fibro!! Katy Perry came out and did a documentary about her fibro which was brilliant cause now people have a better understanding that it's not just to claim benefits its an illness that people struggle every day and work. 

I find it hard to understand the illness so I don't blame non suffers for not understanding it! 

I am a recovering addict (gambling and alcohol) i have been recovering for nearly 3 years and doing well. The doctor is aware of this and said he has to be careful what meds he tries with me cause I am high risk of becoming addicted. So it's a hard one. 

I'm going to get him to refer me to a pain management. What do they do for you? 

My positively is decreasing cause my body won't keep up with my mind. I suffer from bad anxiety so I have to be busy all of the time. I find it difficult to sit still and relax for awhile therefore my pain is worse cause I don't take that 5 minute break. The mornings are becoming a nightmare. I'm stiff as a board and very sore. 

When I sit down on the floor to play with the dogs I physically can't get up it's like my body is "set" to the sitting position and I can't return to the standing position. 

I'm only 33 and I feel like my body is 93. What am I going to be like in 10 years time? Not been able to work? Walk? Talk? I'm always thinking of my further and it gets me down. 

Going down to part time isn't an option right now my mental health wouldn't be able for it. 

What non-medicated options work for you? Massages? Meditation? Or what? 

I don't want to be rude but even sex and foreplay is sore which makes it difficult for my husband and I don't blame him. 

He is starting to be more understanding but in the bedroom department he is not and Iv never told him it's very sore for me cause I don't want him feeling guilty. If I give him oral i am very very sore, I don't want to say it to him cause most of the time that's all he gets. 

I love him so much and I don't want our relationship to fail because of this illness and I'm determined to fight this but "how" is my question that can't be answered. 

I will have to put a lot of thought in OxyContin if people use it for recreational use, I am an addict and if I get a slight buzz I'll stay on it just to make me "feel good" even if It doesn't take away the pain,  if that makes sense. Specially because my mood is low I'd do anything to give me a lift . 

then on the other hand what case it does work for me? This is where I am at I'm so confused don't know what's best, what to do, and how to do it. Iv lost all confidence in myself. 

You sound so positive and make me feel like I'm not crazy and this does exist cause I have always questioned myself "am I really this Ill, do I really feel pain, this has to be all in my head, your a hypochondriac, are you using this as an excuse to get medication". 

They are all questions I have asked my self several time. I give myself such a hard time. Think by me working so hard and such a stressful job is like trying to prove to myself that I haven't got this illness and it's all in my head. 

It's when I have people like you that it reminds me, I'm not fricken mad, this does exist, I am feeling the pain, etc. 

Have you got a fibro support group near you? I know there is one in Dublin but that's miles from me. 

Hi. It is much more difficult for you because you have had problems of addiction. I get NO BUZZ at all from my treatment. Nothing has ever done that for me, and I am very grateful. It must be horrible to be addicted to something. My partner is alcoholic (he doesn't drink now, but the temptation will always be there) and he can't go ten minutes without a cigarette, so I know how difficult it can be to live with the absolute NEED to have something. The pain clinic has suggested kine, but I am so stiff and everything hurts so I don't want to be pulled in all directions!! I don't like massage; in fact I can't bear it sometimes when my partner strokes my hand. I love him very much and I love to stroke HIS hand, but I just can't stand it. My skin is so sensitive now. Your friend who thinks that fibromyalgia is caused by sitting down all day takes my breath away. I have always been a workaholic so it's certainly not the cause of my illness. I will be seeing the specialist at the pain clinic on Friday. I don't know what she will suggest next. I have just finished a 6 month cure of Ketamine intravenously for 3 days each month and I could take it in tablet form now but I don't know if I want to take the risk. During the treatments my head spun and it was most disagreable although that sensation passed as soon as the drip finished. I don't want to have that problem if I take tablets each day. There isn't a support group near me, but lots of people say they also have fibromyalgia as soon as I say I have it. When I question them, they haven't actually been diagnosed by a specialist, and they think that taking baths with essential oils or special salts helps them. They don't seem to have any trouble walking, bending, getting up from the floor or out of a chair, so I personally can't see how they can possibly have the same illness as me (or you) My illness started when I was about your age, and I have had a lot of pain but I was not as handicapped as I feared I would be at my age until about 18 months ago, when it suddenly got a lot worse. I hope your husband is understanding because if not it will be difficult to see a positive side (well to be honest, there isn't one! but we have to try!) It's true that love-making is a lot more complicated and less spontanious than before but it's worth the effort to try even if marathons are no longer practical or possible. I can't sit or stand in the same position for more than a few minutes otherwise like you my body locks in position, and I feel like a robot when I start to move again. Standing in a queue in a supermarket is SO painful. We have tills especially for handicapped people, but able bodied people always use them too. A few days ago I asked to go ahead of the queue (I have the right with a priority card because of the illness) Normally there is no problem but a woman of about 40 started making such a scene. She said "Oh its TOO easy to just go ahead of the queue because you are handicapped. I've got to buy my groceries before I go to work and thats more important . I WORK!!!" I really gave her a piece of my mind, and everyone else in the queue thought she was disgraceful and said so. Some people are so unkind, even vicious like her, but the majority are understanding thank goodness. I don't let that get me down because I know I have done my share of working, and am not a bit lazy, but physically now I have limitations. I don't know what to suggest to help you to have a more positive outlook, because I know that this illness can cause depression. But I do feel most strongly that the answer is not with mood altering drugs. If you find something to ease the pain you will feel better, but  opiates and morphine would be very bad for you with your past history of addictions. You have enough problems now without the added stress of being addicted to strong drugs. I like reading and painting furniture so I always have something to interest me. On bad days I do almost nothing, but I don't feel guilty any more. I continue to make plans for the good days. I am an avid collecter so I also enjoy cataloguing my collections. I collect perfume bottles, minerals exotic sea-shells, antique dolls, porcelain figurines. I spend time re-arranging my collections, doing research etc. For me that is very important, it stops me from spending too much time worrying about the future. If I think too much about how it could all end I panic and that serves no useful purpose. I wish I had something useful to tell you that would help you. I think that stress makes the pain worse, so perhaps a very stressful job is not ideal, but I realise that you can't just change your occupation. What is your profession? Do you still enjoy your work? Try to sort out your priorities. Make a list of all that is good in your life, and another of all the bad things . Seeing everything in black and white can help us to get our thoughts straight. One thing you can be sure of, the pain is not in your head!! Take care. XXXX

Hello. I am sorry the oxycodone doesn't help you because my specialist insists it's the only effective treatment. What dose are you on? Perhaps it is not high enough. Try taking 1000 mg of paracetemol at the same time. I was hospitalised for 5 days to try to sort out my pain management and the doctor there told me that taking the paracetemol would increase the efficacity of the Oxycontin, and it certainly seems to help. I have been having Ketamine intravenously for several days each month also. I hate needles, it's almost a phobia, and I have to have local anaesthetic before I can support the injection but that can help too. Like you I don't work anymore, it became impossible to continue working with the extreme tiredness. I also lie down several times a day, whenever it gets too much. Yesterday I had a lot of appointments and could not immediately lie down to sleep when I felt the need. I felt really ill when I finally lay down, and slept immediately. I need to actually sleep, not just lie down, but even 15 minutes later I can feel much better. I love reading, so inactivity doesn't bore me. I also enjoy repainting small pieces of furniture. I do it for pleasure now, but before the pain became too bad I painted huge armoires for sale. Now I can't stretch and bend like before so I am limited to small items that I can place on a table to work on them. It's important to have an interest that you really enjoy, and that you are still capable of doing. It helps me to feel less useless! I have also rediscovered the joy of cooking, when I was working I didn't have much time to try out new and adventurous dishes; now I love trying complicated recipes. Often I have to prepare the ingredients then sleep before I can cook them, but I accept than now as my normal mode of life, without feeling guilty. YOU KNOW that you lie down several times a day because you don't have a choice. I felt almost ashamed when I had to do so, but I soon realised that worrying what other people think would get me nowhere. I am learning to accept my limitations, and to try to enjoy things that aren't too taxing. I also think it's important to have a few things to look forward to. I am planning on a few days holiday. I know that it will be exhausting, but a change of scenery will surely be beneficial. I will be staying in a hotel, so I will be able to continue with my "naps" without deranging anyone. The last time I visited Paris I was in too much pain to get about, couldn't climb the stairs for the metro, or get in a bus. Now with the Oxycontin I think I will be able to enjoy my next visit. I adore browsing in the huge second-hand book stores, and the antique markets, and finding cosy little family restaurants. Visit a couple of museums, nothing too strenuous. I have to believe that I can still enjoy these things, if not life will not seem worth living. Constant pain and stiffness takes all the fun out of it. Even everyday shopping can be a major problem some days. Standing in line can be excruciating, and although I use a caddy provisions seem a lot heavier than they did before! I find it hard to live one day at a time; I have always had projects in view, and still feel the need to plan ahead, even if, as so often happens, when the great day arrives I am too tired to get out of bed. I hope you find something to ease your pain, it is so hard to bear. I have just spent a very restless night with too much pain in my hips to enable me to sleep, so I will feel like a wet rag today!! Take care. XXX

hi just a thought

I was diagnosed with Fibromyalgia and CF. I had 7 years of severe pain to shoulder joints, painful underarms and arm muscles, cramping hand and rib pain. I do not know where you live. I no longer have these infections but it took a lot of doing as well as antibiotic. . I did some tests privately and found Rickettsia bacteria at low level including typhus, and anaplasma phag. Lyme disease is also likely. I am in the UK. Anyone that needs a test ask for a rickettsia screen and Ehrlichia. The Lyme test is not that accurate so not great for reliability.

another thought

check ACE levels.